Hypospadias - American Academy of Clinical Sexologists

Hypospadias
S.K. May
DISSERTATION APPROVAL
This dissertation submitted by Sharon Kay May has been read and approved by
three faculty members of the American Academy of Clinical Sexologists at Maimonides
University.
The final copies have been examined by the Dissertation Committee and the
signatures which appear here verify the fact that any necessary changes have been
incorporated and that the dissertation is now given the final approval with reference to
content, form and mechanical accuracy.
The dissertation is therefore accepted in partial fulfillment of the requirements for
the degree of Doctor of Philosophy.
Signature
Date
__________________________________
William Granzig, Ph.D.
Advisor and Committee Chair
______________________________
__________________________________
John H. Arnold, Jr., Ph.D.
Committee Member
______________________________
__________________________________
Stephen L. Sloan, Ph.D.
Committee Member
______________________________
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S.K. May
ACKNOWLEDGEMENTS
First and foremost, I must express gratitude for my faithful companion of twenty-eight
years. My husband and lover has been my own personal computer-help desk, but
because of this project, Ron has developed many other useful skills, such as shopping and
cooking.
My mother and my children - Danny, Shannon, Craig, Chad and April, all have offered
frequent support and encouragement. Thanks!
Appreciation also goes to Gretta, a colleague from sexology classes, to my dear friends:
Nancy and Elizabeth, and to my boss, Dr. Lee Arnold, and his office manager, Brenda.
You have all helped me to stay focused and accepted the limitations I had to measure out.
"Thank you" as well, Dr. John Arnold and Dr. Stephen Sloan for serving on my
dissertation committee. Of course, I owe a great deal to my "tutelary saint," Dr. William
Granzig. As soon as I came to you with my plan to back up a research topic with my
nursing experience, you immediately directed me to a topic that I discovered to be "virgin
ground," and where Sex Therapists are greatly needed and welcomed. Moreover, in
order to serve those special needs, knowledge and understanding are essential.
Because I did wisely choose to pursue the topic of "hypospadias," I have become
acquainted with some very incredible people. The individuals that granted interviews
opened their hearts to me. They unselfishly shared their personal struggles, pain and
hopes. Because of them, I have been inspired. My understanding of what it is like to
face the challenges of hypospadias was enhanced far beyond what I could ever glean
from reviewing other studies. To the men and their loved ones who have been affected
by this "anatomical variation," I dedicate this paper.
Sharon Kay May
iii
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Title Page…………………………………………………………………………
Dissertation Approval……………………………………………………….…… ii
Acknowledgments………………………………………………………………..
iii
Vita………………………………………………………………………….……
iv
Table of Contents………………………………………………………………...
1
Abstract…………………………………………………………………………..
3
Chapter 1: Introduction to Hypospadias…………………………………………. 5
Chapter 2: Methodology…………………………………………………………. 10
Chapter 3: The All Male Review: the developing male anatomy and physiology
18
Chapter 4: Review of the Literature on Hypospadias…………………………….
The Physical Challenges…………………………………………………… 30
Chapter 5: Continue Review of the Literature on Hypospadias………………….
Psychological Challenges:…………………………………………………. 57
Chapter 6: The Good, the bad, and the ugly: Experiences of Living with ………
Hypospadias: Thirteen Personal Stories…………………………………….
74
A: Urinalphobia…………………………………………………………
74
B: "He's having surgery on his arm!"…………………………………
79
C: "How I became a motorhead."……………………………………..
83
D: Hypospadias Fashion Show: catheter and leg-bag……………… 89
E: "What hypospadias?"………………………………………………
92
F&I: Honeymooning with Hypo………………………………………
94
G: Post Traumatic Locker-Room Syndrome…………………………
99
H: A Legal Sex-Change Story..…………………………………………
105
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K: "Maybe he should be a Priest?"……………………………………
107
N: My Life With Hypospadias………………………………………….
114
L: Four adults Vs one toddler for a bandage change………………
117
O: "I can't tell where he's peeing from!"……………………………
124
R: "More surgery? What's the point?"………………………………
127
Conclusion……………………………………………………………
130
References………………………………………………………………………..
134
Appendix…………………………………………………………………………
Appendix 1: Glossary of terms…………………………………………………... 141
Appendix 2: Questionaire …………………………………………………….…
ABSTRACT
146
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S.K. May
It is well understood that an individual's ability to form intimate relationships
depends in part, on having a solid, foundational sense of self, based on realistic selfknowledge and a reasonable degree of self-acceptance. It is indeed essential that
therapists working in the field of Sexology understand the contributing factors that may
challenge such a development of self-acceptance. No where is this more evident, than
when an individual starts life with a physical challenge.
Hypospadias is the medical term for a male birth defect that affects the body-self
image concept in a major way, determined by the very "part" that affects a male's selfconcept- "his penis." It is a condition in which the urethral tube, a passageway for both
urine and semen to exit the body, does not form as usual. While the baby was still
growing before birth, the urethral opening prematurely terminated on the underside of the
penis, rather than ending at the tip. This malplacement of the urethral opening, before it
reaches the glans, on the shaft, or even as far back as the scrotum, usually affects the
boy's ability to stand and urinate like other boys and men. For him, having to sit and
urinate like a female, places him at a painful social disadvantage. And too, associated
conditions may prevent him from having a straight penis, necessary for satisfactory
sexual function. Corrective surgery often brings additional challenges- complications and
more surgery.
It is one of the most common birth defects in boys, with approximately 8 out of
1,000 male newborns being born with hypospadias. Furthermore, reports abound that
indicate an increase in Hypospadias in the U.S. and in other countries around the world.
The Internet has provided an expedient vehicle enabling Hypospadiacs to come out of
"hiding the secret in their pants" to form an international fellowship with local support
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groups. Parents of children with hypospadias are eager to learn from and share with these
groups. No longer to parents resort to following the limited advise of a single doctor, but
equipped with medical information, they "shop" for surgeons and may travel a
considerable distance to obtain the most favorable surgical results. And what is more, the
corrective surgery and care of those with hypospadias has evolved into a true
subspecialty- hypospadiology.
Hypospadias is a fairly common phenomenon. A great deal of research already
exists in the medical community. Time after time, these researchers suggested
psychosexual counseling to assist hypospadiacs through their many challenges to selfacceptance. This in itself, is a call for Sex Therapists to become acquainted with this
condition and become prepared to meet the specific needs of a group that is growing less
shy and less hesitant to ask for help.
Therefore, the purpose of this study is to examine the physiological and
psychosexual challenges of males born with hypospadias, as well as their loved ones. To
accomplish this, a review of the literature is done in order to gather a base of knowledge,
including vocabulary, etiology, and appreciation of surgical procedures and possible
complications. A review of normal male physical development is presented in order to
draw a parallel of comparison.
Moreover, facts alone would not be sufficient for a realistic understanding of the
challenges of hypospadias. In order to augment the literature and reinforce empathic
enlightenment, individuals who have been affected by this anatomical variation, have
contributed their personal accounts, guided by a semi-structured questionnaire.
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CHAPTER 1:
INTRODUCTORY OVERVIEW OF HYPOSPADIAS
The penis is mightier than the sword.
Mark Twain
INTRODUCTORY OVERVIEW TO HYPOSPADIAS
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Hypospadias, a developmental anomaly, presents with a urethra that does not
open in a regular position on the genitals. Rarely does this condition occur in females,
with the urethra opening into the vagina, but the urethral malposition on the underside of
the penis or on the perineum, is one of the most common birth defects in baby boys
(Novak, 1995, p.356.)
Hypospadias is usually diagnosed in the newborn nursery. Any natural
passageway from the body is called a meatus. In a newborn, those natural passageways
are evaluated for patency (openness) and function. Thus, the use of a rectal thermometer
would serve a double purpose and the witnessing of the baby boy urinating is recorded
(but from the exact "hole" is sometimes not observed). A newborn assessment form
should include indications for meatal location on a diagram. This monograph on
hypospadias is specifically concerned with the external outlet of the urinary meatus, but
to simplify, the terms of urethra and meatus are used interchangeably.
In cases of hypospadias, rather than the normal position on the tip and in the very
center of the glans penis, the meatus is positioned elsewhere on the ventral aspect of the
penis, including the glans or corona, penile shaft, penoscrotal junction or perineum.
Experts say that hypospadic variations occur in one out of every 150 to 250 live births or
8 in 1,000 (Paulozzi, et al. 1997). A full discussion of the Epidemiology of hypospadias
is listed in chapter 4.
In this study of penile anomalies, it is important at this time to mention a similar
congential condition- epispadias. Unlike hypospadias, the epispadic urethra is
malpositioned on the dorsal, or top of the penis. This condition usually requires many
complicated surgeries. The child usually remains incontinent of urine until around age 5
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and before final urinary reconstruction is performed. Frequently, epispadias is associated
with additional severe anomalies, such as "exstrophy of the bladder," in which the
bladder lies outside the abdominal wall at birth (Novak. 1995). This condition, that
appears about 50 times less common than hypospadias (Paulozzi, et al. 1997), also tends
to occur more frequently in children conceived by in vitro fertilization (Wood, et al.
2003). See figure 1. for a comparison of hypospadias and epispadias.
Based on the irregular location of the meatus, a diagnosis is classified as mild,
moderate or severe. While a short urethra is inferred by the medical term of
hypospadias, the prefix of hypo refers to low or below normal, and the root word span, or
to draw, indicates the purpose of the tube "spanning to and drawing from" the bladder
(Taber's Cyclopedia Medical Dictionary. 1997 sub verbo).
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Babies born with hypospadias are routinely not circumcised at birth. The extra
foreskin is usually needed for surgical reconstruction of a new urethra, or neourethra.
Avoiding social implications and school interference, surgical repair is usually scheduled
before the boy reaches school age, preferably by the child's first birthday.
Not only is there a malformation of the urethral tube, but hypospadias is
commonly associated with various other penile alterations. One such alteration will be
described at this point in order to explain how hypospadias would be further classified. A
downward bend or ventral curvature of the penis, especially when erect, is referred to as
chordee (Taber's. 1997. Sub verbo). This unusual shape is caused by a tightening of
fibrous tissue in only one of the two corporal bodies that are around and at the base of the
penis near the scrotum. This structural defect, which is either noticed at birth or later
acquired, results in the penis bending downwards and appearing curved and shorter than
it actually is.
Many men have a slight bend or tilt to the penis but chordee is a bend so
substantial that penetration may be very difficult for the man and/or for his sexual
partner. Erections are often associated with pain, which becomes more problematic
during the accelerated growth of puberty. Therefore, surgery to release the tight, pulling
corporal body of the penis is usually not postponed. In fact, the presence or absence of
chordee is often a deciding factor for surgery regardless of the position of the meatus
(Gearhart. 2003).
If chordee is present, pediatricians generally classify hypospadias by the location
of the meatus, either before or after the chordee is surgically released. Named after the
surgeons, who developed these classification methods, pediatric urologists tend to prefer
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one method to the other. Smith's classification is used to describe the metal position
before a chordee is corrected while Schaeffer & Erbes method is to wait on labeling until
after the chordee is corrected (Kolodny, et al. 1979.) This method accounts for the
possibility that the meatus would appear even lower on the genitals after the tight chordee
is released and therefore, a more accurate classification can be given.
Please refer to Figure 6. in chapter 4 for classifications of mild, moderate and
severe correspond to first, second and third degree hypospadias. The majority of cases
are first degree with the meatus off-position on the glans penis. Second degree, or middle
types, is where the meatus is at the base of the glans (coronal), just below the base of the
glans (subcoronal), or midpenile (in the middle of the shaft). When the meatus opens on
the scrotum or below (penoscrotal, scrotal or perineal) it is considered third degree or
severe hypospadias (Kolodny, et al. 1979).
Glanular meatal position, as previously mentioned, accounts for 50-60%
of hypospadias cases. Second degree appears in 25%, and only 15% of the cases are third
degree (1997). The particular position of the urethra on the penis or perineum also
determines the degree of handicap, treatment and complications. After a review of
normal male development, a discussion of each type or degree of hypospadias will follow
with issues pertinent to that particular classification.
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CHAPTER 2:
METHODOLOGY
The social sciences cover a spectrum of exactness,
from quantitative rigor to qualitative imprecision,
. . . a certain tolerance for ambiguity.
Gregory A. Kimble, Foreword,
Dissertations and theses from start to finish.
(Cone & Foster. 1993)
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METHODOLOGY
Preliminary research began with a systematic trawl conducted for general
material regarding hypospadias, first for formal research literature and medical textbooks.
Secondly, for very enlightening but informal material found on the Internet in support
groups, chat rooms and physician Q&A pages.
A process that turned out to be beneficial in the trawling phase was exploring the
Internet for regional children's hospitals in which hypospadias surgeries were performed.
The Children's Hospital of Philadelphia (CHOP) is known as a pioneer in
hypospadiology. Also helpful in a major way, was the HEA that I had found with word
searches.
The Hypospadias and Epispadias Association (HEA), based in the U.S. in
Colorado, is an international, tax-exempt, organization that is only four years old but has
over 600 paid members. Founded by 2 doctors, the association provides education and
support for males with hypospadias and epispadias. Their very active forums (MSN and
Yahoo) are also open to parents, partners, family members, and health professionals and
links to groups in other countries, to the Intersex Society, a special site for parents, and to
a group for teenagers with hypospadias. The HEA has a newsletter and well-attended
annual conferences. In addition, the HEA conducts on-line surveys, comparing their
special issues to other control groups. The HEA 2003 Survey (Harrison) will be
discussed in chapter 5.
Finally, I placed general invitations on the message boards for the HEA and on
the Australian-based parent's forum (mums with hypospadias kids) for participation in
my intended research project. I began to correspond with twenty-two individuals who
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initially volunteered via email. By the time I had formulated my research direction, with
few exceptions, I had corresponded with the same individuals for over 6 months.
The incidence for hypospadias in the U.S., as stated in the 2003 textbook,
Pediatric urology (Gearhart, et al. 106), is "1 in every 250 live male births." The
condition is also increasing in occurrence and severity around the world (Paulozzi, et al.
1997).
Moreover, throughout the literature review, many studies concluded with a
referral to the benefits of counseling for this population.
Thus, the mission was purposed for providing a knowledge base, gleaned from
volumes of medical research, and complied for Sexology practice, that would provide the
understanding of hypospadias and then add the enlightenment from real people with real
experiences. Including these two components in social research is what Strauss (1987)
referred to as the "humanistic version."
Compiling a study of this nature, which involves the examination, sifting, and
matching of literature to diverse, personal accounts would meet the design of qualitative
analysis (Strauss. 1987). This nonmathmatical approach to complex data, applied to
"pragmatic, natural analysis, is grounded theory." Presentation of facts, figures,
drawings, and general information would be built upon, and compared to, a foundational
review of normal male anatomy and physiology. This in turn, would be the background
on which to place the social phenomenon of living with the challenges of hypospadias.
In addition to verifying the personal with the medical, or vise versa, each account
adds to the conclusion of the whole. The conclusion, in turn, is followed with an
interpretive discussion, using deductive and inductive reasoning. "A hypothesis,"
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according the Strauss research process, "is a provisional answer to a question about
conceptual relationships: "similarities and differences (p.45), and major situational
issues. In other words "What do people argue about?"
The Strauss (1987) project on biographical body conception (BBC), which put
content analysis in a conversational style, serves as a model for this study on
hypospadias. By having a "theme-oriented eye," recurrent themes became apparent while
interpreting the personal data submitted by the participants. Here the themes that Strauss
called "consistent threads" belonged in one of two dimensions: physical or emotional
challenges.
Besides Aesthetics, physical challenges were seen in surgeries: those facing them,
or in recovering, and the successes or failures. Chronic complications, such as infections,
maintaining or regaining function were other physical challenges.
Likewise, challenges of the emotional dimension were as difficult to transcend as
traumatic memories, adjustment and self-acceptance to name a few.
Although birth defects of the urogenital tract are not listed in the category of
medical conditions that affect the mental/emotional state, the Diagnostic and Statistical
Manual of Mental Disorders, fourth edition (DSM-IV. 1994) does list pyronies disease
and urinary tract infections (UTIs) as affecting the mental/ emotional state. Pyronies, a
disease in which there is a painful bending and hardening of the corpora of the penis, is
very similar to the chordee often associated with hypospadias (Taber's. 1997).
Adjustment disorders, another category in the DSM-IV (1994), identifies chronic and
continuous stressors of a disabling general medical condition, affecting the family as well
as the individual.
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In addition to adjustment, two additional themes relate back to the question posed
by Strauss of "What do people argue about?" There is a constant debate among those
affected by hypospadias whether or not to have surgery, especially if it is only cosmetic.
A second theme, and one that seems contrary to the information revolution
attributed to the Internet, is the matter of information control. Questions of "What caused
my son's hypospadias?" are posted constantly. What are parents told by doctors and in
turn, what and how do they pass on that information to their sons? This is still a big issue
historically for many adult males who struggle with ongoing resentment regarding
parental management of their condition in childhood. Included in these wounds too, are
peer rejection, bullying, and teasing.
A medical background was another advantage in acclimating to the hyospadias
vocabulary and abbreviations, such as the abbreviations of "hypo or hs" for hypospadias.
For a comprehensive, hypospadic glossary, see appendix 1.
For the development of the questionnaire (appendix 2), Hadley and Mitchell
(1995) in Counseling research and program evaluation, was consulted. A "semistructured guideline" stipulates specific points to be covered as well as open-ended
questions. Given the humanistic, theme-oriented approach of the study, this design was
appropriate. The presentation of the participants follows a mixture of both "within and
between" subjects approach (Cone and Foster. 1993. P.120).
Of the twenty-two initial volunteers from the two Internet groups (HEA and
mums with hypospadias kids), certain ones had indicated a real interest in participating.
Of these, 20 were chosen based on certain criteria. First, there was an attempt to have at
least all 6 of the basic classification types of hypospadias represented in the study.
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Excluded were the rare conditions of epispadias as well as other congenital syndromes (a
group of birth defects that occur together) that included hypospadias as one among other,
unrelated anomalies.
Secondly, the questionnaire was sent to respondents, who were given the
instructions to read before deciding, and to give as much or as little information as they
wished. In this way, the questions could be more projective. Of course, use of the
English language was essential regarding the scope of the World Wide Web.
Fifteen was the end result of respondents returning completed questionnaires,
including participation from two wives and two mothers. The age range of males within
the personal accounts is 2-60 years old. They live in the U.S. and Canada, and three
different European countries.
Ethics that are involved in the study: confidentiality, informed consent, privacy
and debriefing will be discussed in detail.
Respondents consented after detailed explanations via email. No official consent
forms were required since personal data would be confidential. Names were substituted
with letters of the alphabet and their specific locations were not disclosed in the paper.
Files were saved on a disk marked: Confidential research study.
There were no risks, except for a few who opened old wounds. Still, healing is an
ongoing goal of these organizations. I was careful to debrief after the questionnaires
were submitted. Some individuals sent photographs or made them available on the group
site. Some of the photos acquired did not reproduce well; therefore I decided to depend
on my own illustrations and diagrams.
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I was fortunate to have the perfect volunteer for a pilot study of the questionnaire.
Of a husband and wife team, (I and F), who collaborated on their responses, the wife was
very experienced in research design. Their input was so exceptional; I immediately
implemented the questionnaire without revisions. In retrospect, I had failed to account
for the couple being newlyweds, and who were actively "honeymooning." Still, the other
respondents did as well, providing very insightful answers. I have come to believe that
the success of the stories was not in the design of the questionnaire, but in the subjects
who were willing to share.
Privacy is always a consideration in personal disclosure. The Internet could not
have been imagined when the following definition of the right to privacy was written in a
1967 report, Privacy and behavioral research" the "right to decide how much one will
shares…of thoughts, feelings, and facts about ones personal life" (p.2).
Respondents demonstrated this feeling of privacy, yet divulged many of those
significant events in their lives, as stated in emails: "I can tell you these things since I am
not face to face." "Being anonymous affords me to stay private and no effort to worry
about my dignity." "I can be utterly truthful." Therefore, for the purposes of this study,
the Internet was an idea setting.
Herein this discussion of methodology leads to other potential research options
observed in the collected data. One such option that I encountered was interesting to
note from I, the bride of F, who participated in the pilot study. Among other topics, she
suggested a study on the fantasies of males with hypospadias…"and the recent study on
hypospadias showed a much higher incidence of masturbation by men with Hs than the
control group. Add to that an inability (real or imagined) to perform 'normally' and you
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may have an entire group of men with marked deviations from the norm when it comes to
self-pleasuring, exhibitionism, shyness, reclusiveness, and other such actions that may
shed new lights."
A last word by Cone and Foster (1993) regarding the excitement that comes from
a "cognitive match" with the topic of research. If that refers to perceiving themes of
growth, healing and adjusting to challenges, then I agree. After all, a vast number of
boys, adolescents and men have been referred for counseling by the medical profession.
Lastly, I have observed that the men in the HEA prefer not to have hypospadias
labeled as a "defect," but rather referred to as a "condition," or "variation." I have
attempted to respect their feelings as much as possible in my wording.
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CHAPTER 3:
THE ALL-MALE REVIEW: EMBRYO TO ADULT
The brain is viewed as an
appendage of the genital glands.
Carl Jung
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THE ALL-MALE REVIEW: EMBRYO TO ADULT
To better understand male anatomy, and especially hypospadic anatomy
mentioned throughout this study, it will be helpful to review the concepts of body
presentation (Taber's. 1997) listed at the beginning of the glossary as appendix 1.
The Prenatal Male begins at a point which is not at first evident. When the millions
of microscopic "Olympians" are ejaculated into the female ovulation arena, like a true
champion, one tiny gladiator carrying an Y sex chromosome beats even heartier Xbearing opponents and achieves its destiny. Against odds of 300-500 million to one, it
conquers by fertilizing the "golden egg."
Chromosomes, constant for each species, are composed of strands of DNA while
genes are very unique lengths within that DNA strand that carry specific hereditary codes
(Luckmann. 1987). Humans normally carry forty-six chromosomes in each single body
cell, twenty-three contributed by each parent. Looking closer, these forty-six are divided
into twenty-three pairs, with one pair being very different than the other twenty-two
pairs. This special pair are the sex cells, called "gametes" and consists of one X from the
mother and an X or Y from the father. Now we can refer to him, as "Agent 46, XY"
since this is the chromosome pattern of the genetic code for a male.
By its tenth day, it has traveled down the fallopian tube, burrowed into the soft
uterine lining, and developed enough to be called an embryo. The XY combination for a
biologic male will trigger a series of events referred to as "sex differentiation." Prior to
this trigger, the developing embryo contains both male and female potential.
Actually, there are three different anatomic sites in which this differentiation
occurs: the external genitalia, the internal sex structures and the brain (Kolodny, et al.
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1987). Well substantiated by research, complete sex differentiation is critically
determined by the presence or absence of the right amount of testosterone circulating in
the fetal system. Otherwise, according to Kolodny, et al., "a rule of thumb," is that sex
direction tends to always occur in the female direction, regardless of the 46,XY genetic
code. The authors of Textbook of sexual medicine (1979. P.32) also stated that as
opposed to being pregnant with female fetuses, levels of testosterone in the amniotic fluid
of women pregnant with male fetuses, are consistently higher, but much more so during
the first half of pregnancy than in the latter half (1979).
By eight weeks, either potential is evident in two primitive duct systems that have
developed: "Mullerian" to make female genitalia and the male-producing system of the
"Wolffian." (Offering a helpful note from the author of this paper, I used "word
association" to keep this concept ready for recall: switch Mullerian to Molly for female
and Wolffian, to Wolfman for male.)
The following progression of the embryo to fetus, is paraphrased from an
embryology tutorial from Loyola University (Hatch. 1996):
A genital region begins to rise as an "external mound" and an opening
develops between the genital swellings, making 2 distinct sides. These
structures, called labioscrotal folds, form identically in male and female
embryos before 8 weeks gestational age.
[By 8 weeks, male development gets down to business.] In male embryos
with a normal sex-determining region (SRY) on the short arm of the Y, the
germ cells (first rudiment of a developing organ or part. Taber's. 1997. sub
verbo) form the primordial testes and begin to secrete testosterone. In
turn, this circulating testosterone causes development of tissues with and
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bound by testosterone receptors. Then dihydor-testosterone kicks in, a
hormone that is at least 4 times more potent than regular testosterone".
By another week, male hormones have caused the swellings to also
lengthen, enlarge, rotate, and then fuse to be the scrotum. As the genital
tubercle becomes longer, two sets of tissue folds develop on its ventral
surface on either side of a developing trough, known as the urethral
groove. The more inner tissue will fuse to form the male urethra. The
more lateral and outer folds will fuse over the developing urethra to form
the foreskin. As these two layers fuse from posterior to anterior, they
leave behind a skin line - the median raphe.
"The Wolffian duct," according to the tutorial, "is directed by testosterone
to develop into the epididymis, the vas deferens and seminal vesicles. It is
during this stage of development, that the testes move to wait at the
inguinal canal until the pair are ready to descend into the scrotum."
Around 26 weeks, the epididymis precedes the testes into the scrotum (via
the processus vaginalis) and there, they become anchored in the sac. At
37 to 40 weeks (full term) the processus (should) close itself off to any
path between the peritoneum, inguinal canal and scrotum."
Simultaneously, because of the inhibiting influence of the testes, the
Mullerian structures regress. Interestingly, the proximal remnant of this
would-be-female part, "hangs on" between each testis and epididymis as a
little atrophied appendix or 'tag' (Hatch. 1996).
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Fig. 3. Top: Stages of internal fetal development (Kolodny, et al. 1979).
Bottom: Transection of penile development, 9 -12 weeks (Moore. 1977).
Illustration by author, Kay May. 2003.
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To summarize, without the Y sex chromosome trigger, the Mullerian duct would
have developed into a uterus, fallopian tubes and ovaries, thus causing the Wolffian duct
to shrivel up. However, with the Y chromosome present, the Wolffian duct develops
into male genitalia while producing hormones that halt, or "kill off" the development of
the Mullerian system. The sequence of differentiation is completed by matching the male
anatomy with a "male brain" by bathing the brain in male hormones that masculinizes
while defeminizing it (Novak and Broom. 1995). This "testosterone imprinting"
(Kolodny, et al. 1997) is behind the saying "boys will be boys."
At any one of these developmental stages, anomalies can occur due to a myriad of
causes, resulting in problems for the male after birth, and perhaps for his whole life. At
this point, the reader may wish to skip forward to the beginning of chapter 4 and follow
the thread of the embryological origins of hypospadias. Otherwise, we will continue with
the discussion of the normal male anatomy as we fast forward from the embryo to
puberty.
During puberty, testosterone again acts as a trigger. Another flood of this
powerful sex hormone will trigger the process to change this boy to a man. While
females produce small amounts of testosterone, the male at puberty will have levels up to
twenty times higher (Masters, Johnson and Kolodny. 1986.)
Remember the "hormone bath" that the male's brain experienced in utero? The
hypothalamus and pituitary of the fetal brain had been preprogrammed to start puberty at
a certain time, usually lagging behind females by at least 2 years. It is during the
increased sleep time that is well noted in preadolescents, that the hormones again begin to
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trigger great changes. The more they sleep, the better they work (Masters, et al. 1986.
138). See the "Stages of puberty" represented in figure 4, page 27.
Gradually, the gonads enlarge as they respond to triggers of increased
testosterone. The growth spurt that follows takes an interesting course. The feet
typically grow first, rapidly outgrowing several shoe sizes within months. Then about
four months later, there is an accelerated growth of the long bones of the legs. As
testosterone stimulates the larynx, or voice box to enlarge, the voice begins to deepen and
intermittently squeak. Increased musculature coincides with appearance of axillary,
pubic and facial hair. Around 12, nocturnal emissions, or "wet dreams" occur and by age
14, the male genitals have reached full development (Masters, et al. 1986).
The male's urinary system, composed of four organs: kidneys, ureters, bladder
and urethra, are tied together with his reproductive system: 4 ducts, 3 glands, 2 vesicles, 2
cords, 2 testicles in a pouch, and that same urethra descending from the bladder to the
penis tip. Altogether, these two tracts serve as an efficient "delivery system."
The penis and scrotum are external while the other structures are, of course,
internal. The perineum is the area between the scrotum and the anus. The penis is first,
an excretory organ, second though, is its claim to fame as the organ of copulation and
procreation. Prior to differentiation by the Y sex chromosome, its structure was the
female clitoris with the same sensitivity to touch, pressure and temperature.
The urethra is the tube of most concern in this study. Compared to the 4-cm,
female urethra, the male's is approximately 20 cm long. It extends from the base of the
bladder to the surface of the body, normally at the end of the penis. The entire length of
the urethra is lined with epithelial cells. These cells are arranged in sheets and form the
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absorptive covering that lines the body's cavities and tubular structures (Luckmann, et al.
1987). Urination occurs by voluntary contraction of the bulbocavernous muscle at the
base of the penis.
The penis consists of a penile shaft that arises from body-bound muscles to an
enlarged tip known as the glans penis. Numerous nerve endings make the glans
extremely sensitive to touch. The corona encircles the glans as a raised ridge separating
the glans from the shaft, which is also sensitive to stimulation. A thin hairless outer layer
of skin covers the shaft.
Males are usually born with a retractable, layer of skin covering the glans, called a
foreskin or prepuce, of which is often cut away by circumcision. Ventral or underside, a
Frenulum connects the glans to the foreskin.
The shaft or body of the penis contains 3 cylinders of spongy, erectile tissue that
engorges with blood to produce an erection. Two corpora cavernosa lie on each side
while the urethra is contained within the third cylinder, the corpus spongiosum. It is this
spongy envelope of the urethra that lies on the underside of the shaft, where hypospadic
urethras occur. Within these erectile cylinders, there are a lot of spaces called venous
sinuses that are potentially ready spaces for blood to fill and harden the penis for erection.
Hanging from the root of the penis, is a double pouch known as the scrotum.
Unknown by many, the left scrotal side hangs lower than the right side since the left
spermatic cord is longer (Luckmann, et al. 1987). The sides are separated internally by
contractile muscle, while externally, there is a visible line in the middle that extends from
the posterior surface of the penile shaft under the entire scrotum and on to the anus. You
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will recall the tutorial by Dr. Hatch that this raphe or ridgeline is where the two-layered,
labioscrotal halves fused.
Table 1. Typical serum testosterone levels:
Group
Testosterone Concentration
Adult males
385-1,000
Prepubertal children
20-80
Boys in Puberty
120-600
Hypogonadal adult males
100-300
Adult females
20-80
Figure 4. Male puberty. Biological clock alarms. “Jump starts” pituitary gland to secrete
hormones that stimulate manufacture and secretion of sex hormones- affecting many
body tissues and functions.(Vander Zanden. 1997). Illustration by author, Kay May.
2003.
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Very much like little factories, the testes or testicles within the scrotum; produce
testosterone by the Leydig cells, and contain almost a mile of tiny tubes that produce
sperm and seminal fluid. This sperm-carrying fluid leaves the testes, and is stored in the
epididymis until needed. It sits behind the testicle in the scrotum before it continues as
the tube known as the vas deferens (the scrotal tubes that are excised during vasectomy)
then travel up and over the bladder, down to connect to the ejaculatory ducts and through
a donut-like hole in the center of the prostate gland. Here, the prostate gland contributes
the milky component of semen that supplies life-sustaining, emergency food to the
sperm. It is the prostate gland that contracts "during ejaculation, ejecting the ejaculate
through the ejaculatory ducts," (Luckmann, et al. 1987) through the penile urethra and
outside the body.
Incidentally, during puberty, the male starts producing sperm at the count of 20120 million per ml of semen. Sperm resemble little tadpoles that self-propel with a
mobility process called flagella, and happens to be the only flagella produced by humans.
During fertilization, the sperm penetrates the ovum or egg with its head while its tail falls
off. And finally, we have come full circle in the development of "Agent 46,XY."
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Figure 5. Male genital anatomy: Internal and external aspects (Luckmann. 1987).
Illustrated by author, Kay May. 2003
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CHAPTER 4
Beauty - the adjustment of all parts proportionately
so that one cannot add or subtract or change
Without impairing the harmony of the whole.
Leon Battista Alberti
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REVIEW OF THE LITERATURE ON HYPOSPADIAS:
PHYSICAL CHALLENGES
It is interesting that there is such a profusion of literature about a condition that
remains obscure to the general public. Yet, there is a critical need for public awareness
since the research indicated significant increases of hypospadias cases in the U.S. and
around the world. Among other possible causes, the modern environment does not
appear to be friendly to the sexual and reproductive health of men. Even cases of
testicular cancer are up while sperm counts are down.
The physical well being of a male born with hypospadias can become a "relative"
question. He feels physically well based on a variety of variables. First, does the status
of his urinary system threaten to cause even greater problems, if ignored? When does
elective surgery become necessary surgery? Add to those questions the well-documented
male-trait of "ignoring the problem," or being "too embarrassed to tell," all of which too
often advances a male's physical maladies to critical stages. More often with
hypospadias though, it is the parents and the doctor who make the decisions early, before
the male could ever decide for himself. What factors go into making those decisions?
These issues and more will be discussed in this section on the physical challenges
of hypospadias. The various factors that may cause or contribute to its occurrence will be
addressed. Occurrence rates too, and other associated conditions will be listed.
Treatment options, including surgical methods will be explained in near-layman's terms.
Postoperative care and complications will be also be discussed.
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EPIDEMIOLOGY
Prevalence statistics noted in the literature range from 1 in 125 to 250. Since the
latter number is listed in the studies cited in this paper and in the textbook by Dr. John
Gearhart, Pediatric urology (2003), I will cite the more conservative number.
Paulozzi and his research colleagues investigated the findings of two independent
surveillance systems that had reported the first increase in the occurrence rate for
hypospadias in the U.S. That study was published in the Journal of Pediatrics in 1997.
As reported by the two U.S. teams, the increase was compared to reports from 25 other
surveillance systems participating in the International Clearinghouse for Birth Defects
Monitoring Systems. From 1970-1993, the Birth Defects Monitoring Program (BDMP)
looked at hypospadias rates by U.S. regions, as defined by the Census Bureau. The
Metropolitan Atlanta Congenital Defects Program (MACDP) provided prevalence rates
from total births between 1968 to 1993.
The U.S. studies involved more cases, with more recent data and over a longer
period than any of the reports from Europe and was the second longitudinal, domestic
study of its kind on the rates of hypospadias (1st by Mayo Clinic, 1940-70). The BDMP
and MACDP both indicated a near doubling in occurrence, consistent from hospital to
hospital and from region to region. The greatest increase was noted in the Southwest
region and the least in the West. In addition, there was found to be a 2.9 yearly increase
with most cases occurring among white males, intermediate among African-Americans
and lowest among Hispanics. The rate of 3rd degree hypospadias increased 3 to 5-fold
between 1968 and 1993 (Dolk. 1998). During the period from 1985 to 1988, reported
rates by the two systems exceeded those reported by the International Clearinghouse.
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Worldwide, no increases were seen in less affluent nations. The Clearinghouse
reported upward trends in Hypospadias in Denmark and Norway but a previous increase
had leveled off in England, Sweden and Hungary. A 2002 study done in the Netherlands
reported a rate six times higher than previous rates (Pierik. 2002. 1112-1115). Outside
the U.S., the rates were highest among infants of Jewish and Italian descent (Paulozzi, et
al. 1997).
Another 2002 study done in the Republic of China and published in the Journal of
Urology, the rates of hypospadic degrees occur in the opposite manner than of those in
other countries. There, 3rd degree, or posterior hypospadias, was the most common birth
anomaly. Besides other genital variants, i.e., bifid scrotum, undescended testis, and
micropenis, there were unrelated defects outside the urogenital systems.
ETIOLOGY & EMBRYOLOGY
It is regarding the etiology of hypospadias that there is an absolute plethora of
information. Nevertheless, we will return first to the developing embryo and compare
that to the normal progression of development.
When normal embryological patterns of genital development are arrested, altered
or interrupted, there is a complete or partial failure of urethral folds to form, close or fuse.
The extent to which there is forming, closing and fusing determines the position of the
hypospadic urethral meatus. The urethra will be shortened when the fusion fails to
progress distally on the ventral penis. To further emphasize, in a breakdown of the
medical term, hypospadias, hypo refers to "under or low" and spadias from "spadon" not
only referring to "drawing" but to do so in a "rented" fashion. Hypospadias is so named
due to the rented or ripped appearance of the ventral penis (Hatch. 1996). However, it is
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the misplacement of the meatus (opening) along the urethral groove that determines "a
hypospadia, not the appearance."
The surgical team of hypospadiologists, doctors Shukla, Patella, and Canning,
were the contributing authors for the section on hypospadias in the Gearhart text (2003.
Pp. 103-125). These authors stated that the cause for hypospadias is likely
"multifactorial." The opportunity for hypospadic development is explained:
"Hypospadias appears consistent with incomplete embryological
development resulting from: (1) abnormal androgen production by the
fetal testes, (2) limited androgen sensitivity in the target tissues of the
developing genitalia, or (3) premature cessation of androgenic stimulation
caused by early atrophy of the Leydig cells of the testes."
The American Academy of Pediatrics, Committee on Genetics, Endocrinology,
and Urology (2002), strongly advocate against circumcision for the hypospadic males in
order to save the skin of the prepuce for corrective surgery. Furthermore, if the infant
proves to have a severe hypospadias or ambiguous genitalia, it is recommended by the
Committee (2002) to have the child transferred to a center that specializes in genital
malformation syndromes and where a chromosome analysis can be obtained within 72
hours. The Committee outlines the physical examination of the newborn male with
suggestive features of a hypospadias:
First, the pediatrician inspects the external genitalia to determine the
degree of masculinization. The size of the phallus is assessed by rolling
the corporeal bodies between the fingers to appreciate their true length
and girth, as both chordee and abundant prepubic fat often mask the true
size of the penis. In full-term newborns the stretched penile length should
measure at least 2 cm. The extent to which the urogenital sinus has closed
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is then determined by identifying the position of the urethral meatus,
which sometimes requires waiting until the baby voids. The fullness,
symmetry, and rugosity of the labioscrotal folds are then noted. When
these folds are asymmetrical, a gonad is frequently palpable (felt) on the
more virilized side and inguinal hernia is suspected. The pediatrician
should make an attempt to palpate the gonads on each side by sweeping
the examining fingers down along the line of the inguinal canal toward the
scrotum while the other hand grasps any gonad. Resoundingly, in the
case of ambiguous genitalia, there is one deduction that can be confidently
made at that point, that if a gonad is palpable, the infant is definitely male.
In addition, a well-developed phallus indicates that significant levels of
circulating testosterone were present in utero, whereas asymmetry of the
scrotum suggest the secretion of testosterone by the gonad on the better
developed side.
In mild forms called 1st degree, the urethra opens just under the corona glands,
therefore, classified as a coronal hypospadias. When the internal urethral folds fail to
fuse, causing the hypospadic opening, the external urethral folds usually fail to fuse as
well. This causes a dorsal hooded foreskin with the median raphe more at an angle rather
than midline (Hatch. 1996). Shukla, et al. stated, "Usually the urethral orifice will be
stenotic, but rarely obstructive, and in 6 % of all distal hypospadias, an intact prepuce is
present but there will be a mega-meatus variant of hypospadias "(2003). They went on
to say that pinpoint dimples may be present on the surface of the glans, appearing to be
another opening, but the patent (open) meatus is always the most proximal one.
Penoscrotal hypospadias occurs when the urethra develops only to the junction of
the penis and scrotum. The penis may be ventrally webbed to the scrotum or the scrotum
appears as two separate pouches, totally unfused or "bifid." In rare cases, a webbed penis
occurs when the scrotum forms to the ventral side of the penile shaft. In this severe or 3rd
degree condition, an associated shortening of the urethra groove occurs as well, causing a
ventral tethering of the penis called a chordee. A good way to explain this appearance is
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to imagine pulling a thread out of one end of your sock. Where the thread was most
"taut," is the spot where there will be a wrinkling or bending over of your sock.
Providing for the ability of sexual intercourse and fertility is additional goals of surgery.
When Alfred Kinsey, et al. published the hallmark volume I of Sexual behavior in
the human male in 1948, it was noted that:
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"There are a few males in whom the urethra opens on the under surface of
the penis…and the most extreme confusion of biological ideas has come
from the identification of these hypospadic males as Intersexes who are
predisposed to be homosexual in their behavior. However, an
investigation of the embryonic development of the male penis will show
that hypospadias is nothing more than a failure in the closure of the
urethra at the end of normal embryonic development, and no relation
whatsoever to the genetic maleness or femaleness of the individual nor to
the endocrine constitution of the individual (659).
Nearly all of the literature that I have reviewed, since Kinsey gave this oversimplification of links between hypospadias and gender, has clearly demonstration that
chromosomes influenced by the endocrine system determine sex differentiation and
gender. Early treatment of severe hypospadias with gender confusion in the newborn was
to assign a "sex of rearing." But the question remains to be discussed here, can it be
demonstrated, that during the critical period when the male genitals are developing, that a
continuum exists between "a little male, male and very male?"
Dr. Sandberg (and others), who has researched hypospadias extensively,
conducted one study in 1995 on "Gender development in boys born with hypospadias."
He is based at the State University of New York in Buffalo, Department of Psychiatry.
This particular study was published in the Journal Psychneuroendocrinology (1995) and
focused on the gender-role behavior of middle childhood boys (ages 6-10 years; n=175)
born with the androgen-related genital anomaly- hypospadias. These boys did not show
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consistent differences from a control group (n=333) in feminine behavior, but perhaps in
an effort to compensate, there were small though significant, increases in masculine
behavior found. Severity of the hypospadias was unrelated to gender-role behavior. The
number of surgery-related hospitalizations, however, was correlated with increased
gender-atypical behavior.
On the other hand, many experts in the field of hypospadiology take issue with
the Intersex connection. They question how the forerunner of scientific sexual research,
Kinsey, can label hypospadias as "normal embryonic development" (1948) and that there
is no relationship between the malpositioned urethra and the individual's "endocrine
constitution," regardless of the findings of Dr. Sandberg's gender studies. At least,
Kinsey should have pointed to further investigation in that area.
Here, Shukla, et al. discussed the idea that on a spectrum, hypospadias
represented a "mild form of Intersexuality," with a completely feminized male on the
opposite end. They suggested that hypospadic genitals could be viewed as "local
manifestation of systemic endocrinopathy."
Infants born with hypertrophied clitoris and malformed labia or with severe
hypospadias and undescended testicles always challenge identification of a gender.
Occasionally, the cause can be traced to a disorder called "congenital adrenal hyperplasia
(CAH). Such masculinization or lack thereof, results from an overdeveloped adrenal
cortex in which there is subsequent increased production of androgens by the adrenal
glands (Novak. 1995).
The clinical association of hypospadias with Intersex states occurred because of
the increased understanding of the endocrinologic origins of hypospadias (Rajfer, et al.
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1976). There fore, boys with severe proximal hypospadias and those with hypospadias
and cryptorchidism should undergo karyotype analysis and Intersex evaluation as
indicated. The unilaterally or bilaterally state of cryptorchidism with hypospadias does
not predict the diagnosis of an Intersex state.
According to the Pediatrics Committee (2002), a newborn with "ambiguous
genitalia, which as stated, is more often associated with severe hypospadias, has
developed due to the presence or absence of genetic and hormonal influences that are
responsible for the active process of male differentiation. Remember that the fetus tends
to develop as a female in the absence of these male influences. This team stated that:
"Intersex conditions arise because of an abnormality along the
male pathway that interferes with complete masculinization or, in the case
of a genetic female, virilizing influence on the embryo."
Interestingly, the Committee described that the conversion of testosterone to
dihydortestosterone (4 times more potent that testosterone) actually occurs in the "skin of
the external genitalia and masculinizes the external genital structures." Most of this
male differentiation takes place by about 12 weeks, after which the penis grows and the
testes descend into the scrotum. In the absence of the SRY (short arm of the Y
chromosome), female sexual differentiation continues uninterrupted. According to the
Committee, "Even the mildest degree of hypospadias can be regarded as an example of
incomplete masculinization" (2002).
In view of the widespread increase in this male genital condition, it is logical to
question more exogenous factors that act as "endocrine disrupters." In 1999, the
Environmental Protection Agency began testing some 87,000 commonly used,
commercial chemicals for possible affects on reproductive health. The Centers for
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Disease Control in Atlanta and the National Institutes of Health have launched
investigations as well. The CDC, for example, is studying blood and urine samples to
determine to what extent Americans have been exposed to about 50 "environmental
estrogens."
Environmental estrogens are used in the manufacturing of compact discs, baby
bottles, plastic lining in tin cans, and even dental sealants. Shukla, et al stated that these
chemicals are believed to be "bio-accumulated and concentrated in higher organisms of
the food chain, such as large fish, birds, sea mammals and humans (2003).
Many researchers working with wildlife have reported finding more species of
animals in which the gonads no longer appear to be distinctly male or female. In Florida,
feminized alligators and the Sturgeon fish have been found to contain significant amounts
of environmental estrogens (Paulozzi, et al. 1997).
One problem is that damage from these disrupters may not show up for years,
even decades. Such was the case known as the "DES Sons and Daughters." Between
1940 and 1970, pregnant mothers took the drug diethylstilbestrol (DES) an extremely
potent synthetic estrogen, to prevent miscarriage. Besides a high incidence of vaginal
cancer in the daughters, we now know that 30-70% of the sons of these women,
developed genital abnormalities: undescended testes, micropenis, meatal stenosis and
hypospadias (Luckmann. 1995. P 1711). Incidentally, DES studies now extend into the
third generation with continuing evidence of affects.
Without fail, in a daily pattern, on the "mums with hypospadias kids" group site;
there are discussions about one product or another under investigation. Lately, the most
frequent suspected culprits discussed have been: Propecia, Zyrtec, Clarinex and Claritin.
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Environmental contamination may be another possible endocrine disrupter, and
certainly under investigation. One ten-year study was done in Denmark between 19831992, regarding a higher number of hypospadic sons born in two major cities. They
found that, by itself, exposure by either parent to pesticides used in their gardening
professions, was a risk factor for hypospadias (Paulozzi, et al. 1997.)
Exposure to contaminants can result when the mother ingests, inhales or takes in
via the skin, seemingly harmless pesticides on fruits and vegetables or even milk from
pregnant cows. It is interesting to note that a mother's exclusively vegetarian diet
appeared to be a risk factor. It is likely, that when culprits of endocrine disruption are
discovered, they will be linked to practices that have proven to be of great advantages.
For example: under investigation is Lindane; proven to be an effective treatment of
headlice in school-aged children. And isn't this what we have been using in "pet dips" for
parasite control?
Researchers at Mississippi State University calculated that if a child plays with a
dog for five minutes within 24 hours of the dip, petting and rubbing the dog over an 80square-inch area, the child could be exposed to an average of 0.9-1.9 mg/kg of the active
chemicals while the adult reference exposure is 0.003 mg/kg/day. Link this exposure to
the pregnant mother. In addition, one only has to add the search words of dog and cat to
hypospadias on the Internet and be privy to many veterinarian sites discussing an
increase in hypospadias in America's favorite pets.
Other recent studies have noted a rise in males born to mothers over age 35.
Early age at menarche too, appears to be a maternal risk factor. More significantly, the
study by Hussain et al., attributed hypospadias to low birth weight for gestational age
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(2002), usually referring to weight falling below the tenth percentile on the growth curve
(Novak.1995). (In the past, this was referred to as "intrauterine growth retardation.")
This study was done in the U.S. but has been replicated with similar results in other
countries.
There was noted to be an 8.5- fold increases in hypospadias in one of
monozygotic male twins compared with single live male births. Fredell and colleagues
demonstrated that it would be the twin with the lower birth weight that presented with
this genital anomaly. It is suggested that a discrepancy exist in the supply of male
hormones to the fetus where a single placenta is unable to meet the requirements of two
developing male fetuses (1998).
The role of maternal progestin exposure has been repeatedly suggested as
a causative factor in hypospadias. In 1967, Goldman and Bongiovanni produced
hypospadias in male rats by experimentally inducing congenital adrenal hyperplasia
CAH). Likewise, a disturbance in the maternal-fetal milieu regarding hormones was
substantiated by research done by Silver, et al in l999, when "male offspring conceived by
in vitro fertilization requiring progestin therapy, had marked increases of hypospadias.
Shukla, et al point to future areas of research that may include "cellular signals"
other than testosterone and dihydortestosterone, or even endocrine disrupters to find the
key to normal phallic development and hypospadias. Even looking into the "homeobox
gene (Hox) may open new avenues toward increased understanding of the cause of
hypospadias" (2003). To reiterate a statement by our experts earlier in this chapter, the
cause of hypospadias is likely "multifactorial." That formula may very well include
genetics. In most cases, the occurrence reflects nonfamilial and sporadic causes as the
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familial rate of hypospadias is around 7% (Shukla, et al. 2003). The Hypospadias
Information Centre stated it this way: "if you have one son with hypospadias and this
has not happened before, then there is probably a 1 in 10 chance that if you have another
son, he will also be affected. If there is already hypospadias in the family then the
chances will be much higher, maybe as much as in 3 or 4."
ASSOCIATED CONDITIONS
Intersexuality is an associated finding with hypospadias, but because of the
etiological connection, I chose to include it under that discussion. However, I will simply
restate that the more severe the hypospadic status, the more likely an Intersex state exists
(Shukla, et al. 2003).
Chordee accompanies hypospadias in some cases as a ventral penile curvature. It
can occur independent of urethral misplacement, but more commonly, it is seen in the
more severe cases of hypospadias. Chordee can be typed by degrees from most severe in
class I cases (curved more than 60 degrees), to less severe in classes II and III. For
surgery, chordee is evaluated with an artificial erection in which the erectile bodies are
inflated with a saline solution and divided at the most severe point of curvature. (Devine,
et al.1973).
Shukla and colleagues shed an interesting light on the chordee phenomenon.
Through examination of fetal specimens, an understanding has emerged that chordee is a
normal stage in penile development, and the presence of chordee at birth is another
evidence of arrest in development "for a significant variation in the severity of chordee is
noted at all stages of embryogenesis" (2003).
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Undescended testes are the absence of one or both testicles in the scrotum at
birth. Cryptorchidism, a medical word meaning, "hidden testicles," assumes they exist
but are still up inside the abdomen. According to Khuri, et al. between 8 and 10% of
boys with hypospadias has an undescended testicle and 9 to 15% have an inguinal hernia.
However, with more proximal hypospadias, cryptorchidism may be present in as many as
32% and more chromosomal anomalies can be found in this group (1981).
Novak, et al explains that with "testicular maldescent," there is an increased risk
of malignancies, infertility, and testicular injury, such as torsion or twisting (1995).
Surgical removal of a testis would be indicated if it does not move down into the scrotum
either spontaneously or in response to administration of HCG (Human Chorionic
Gonadotropin). However, there are usually no interventions unless the condition is
unchanged after 1 year of age.
Testicular maldescent is rarely associated with any symptoms. However, a testis
may be retractable, moving back up into the abdomen because it failed to permanently
attach in the scrotum. When this occurs, a reflex of the cremaster muscle not only
elevates the testis but rotates the spermatic cord, and severe scrotal pain results as the
blood supply is interrupted. This injury can happen while sleeping, playing sports or
jumping into cold water. It can occur at any age, even in adolescence. Because of
intense pain and the likelihood of necrosis, testicle torsion is an acute emergency
(Novak. 1995. P796).
Inguinal hernias occur in 9 to 15% of boys with hypospadias. An inguinal
hernia is visible as a bulge in the lower abdomen or scrotum and surgery is indicated.
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Urinary tract infections (UTI's) are relatively common in children, and
especially at risk, are males with urogenital anomalies and those who have not been
circumcised (Novak, et al. 1995). Shukla et al stated that boys with external abnormalities
of the urinary tract, should be screened for internal abnormalities with ultrasound or
radiographic procedures. Intravenous pyleogram, renal ultrasound and a voiding
systourethrogram are necessary to assess the anatomy of the urinary tract (2003).
A prostatic utricle is often enlarged in boys with hypospadias. Due to this
enlargement, they are more susceptible to UTI's; formation of stones, trouble with
continence or with being catheterized (Shima, et al. 1992). It was reported by Devine in
1980, that of those with perineal hypospadias, 57% had prostatic utricle enlargement.
A major decision for parents of sons with hypospadias is whether or not to have
the hypospadias surgically corrected. I have observed rather heated debates between the
mothers and the adult men with hypospadias. Unless chordee exists, the consensus from
the men appears to passionately advise against any surgery for merely cosmetic purposes.
They advocate instead, training the child to accept their uniqueness. Nevertheless, it is a
decision that parents face, but in spite of the "horror stories" that they have heard about
surgical complications, I have observed that many parents now go into the surgery
arrangements, very well-equipped with knowledge and information. There is a personal
account by a mother (L) regarding her son's (M) surgery in chapter 5.
SURGICAL CORRECTION
"The goal of hypospadias surgery," stated Shukla et al "is to create
a functional sexual organ that is free of curvature. Equally important is
the formation of a glanular urethral meatus that allows a boy to void with
a laminar flow while standing. A cosmetically sound penis requires a
cone-shaped glans and supple penile shaft skin (2003).
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Again, the amount of literature to sift through describing approaches to the
surgical correction of hypospadias and chordee appeared nearly an impossible task at
first. After some time, patterns and consensus emerged among those who operated and
those who studied their surgical results.
If possible, a one-stage repair is most desirable, eliminating the need for multiple
operations. On the simple side, surgery involves removal of fibrous chordee to correct
the ventral curvature of the penis and reposition the urinary meatus. As previously stated,
newborns with hypospadias should not be circumcised, since the skin of the foreskin is
needed in the reconstruction.
Timing of genital surgery takes into account the adverse psychological effects of
surgery and parental separation. Surgery, as recommended by The American Academy
of Pediatrics, should be between 6 and 12 months of age (1996). Shukla and associates
prefer to operate at the age of 4 months. According to these hypospadiologists, healing
occurs more quickly, with fewer scars and the younger infants overcome the stress of
surgery more easily (2003).
Although no date is provided in the Progress of plastic surgery (1982)
regarding Paul of Aegina, Wallace historically gives credit to this man for the earliest
efforts to treat hypospadias. Paul's idea according to Wallace was to amputate the glans
in order to bring the meatus to the tip of the penis. Still, it is pointed out by Wallace, that
this method "highlights one of the therapeutic challenges of the specialty; achieving a
distal meatus." Modern hypospadias repair can be dated back to 1830. Significant
progress was later obtained in 1874, when Dr. Duplay developed the method of releasing
chordee, and this same technique is still used today (Wallace. 1982). In the beginning,
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the challenge of hypospadias repair was undertaken by plastic surgeons that knew little
about urology. It is an "eye-opener" to read Hypospadias repair in adults: adventures
and misadventures (Hensle, et al. 2001. Surgeons refer to cases that have never had any
prior surgery as "virgin hypospadias" while the term for those who have had many
unsuccessful surgeries are called a "hypospadic cripple."
Nevertheless, as reconstruction surgery became more and more a specialty,
urologists took over. Now it appears that pediatric urologist specializing in hypospadic
surgery, such as Shukla and associates possess intricate plastic skills as they operate on
very tiny genitalia. There are, of course, urologists who exclusively perform surgery on
adult males with hypospadias.
MAGPI (flip-flap), TIP or Snodgrass, Onlay Island Flaps, and Transverse or
Preputial Island Tube Repairs are names for the more commonly used surgeries, being
preferred over the Mathieu, Mustard and over 200 other techniques. I have attempted to
simplify illustrations of these four main techniques in figures 7-10 on the next 4 pages.
As previously stated, the one-stage repair is the ideal with fewer complications and better
cosmetic results, but in severe cases, the surgeon has little choice but to operate in two
different stages, often 6 months apart to facilitate healing. In the first stage, the penis is
Straightened, making the location of the hypospadic urethra worse. Six months to 1 year
later, the neourethra is constructed.
Additional nongenital tissue alternatives, referred to as "free grafts" are often
needed for severe proximal hypospadias repair or other repeated repairs. These free
grafts have one main requirement- epithelia-type tissue. Tissues used routinely in these
grafts are bladder and buccal mucosa. Shukla and associates prefer the buccal mucosa
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because of the strength and thickness of its epithelial cells and being rich in collagen
which favors graft takes. This tissue is cut from the cheek inside of the mouth. A new
section of urethra, called "a flap," is constructed to bring it as distal as possible to the
glans. This new section of urethra is referred to as the "neourethra" (Shukla, et al. 2003).
As you will notice in the surgical drawings in figures 7-10, the penis is
"degloved." This gives a whole new meaning to the concept of "being naked." The skin
of the penis is pealed away much like a banana. In understanding the terms, therefore the
specific surgical techniques, it helped me to communicate more effectively with males
who had had those surgeries. Furthermore, I better understood the complications with
which some still struggled. "Onlay flaps" are sections of neourethra placed at either end
of the construction, distal and/or proximal, "tubularized" because it is rolled into a tube,
and "island" because it is placed in the middle of two other parts.
POSTOPERATIVE COMPLICATIONS
A Fistula is a hole that opens up along the newly created urethra. This "blow
out" (an HEA term for fistula) results in urine leaking out of the neourethra as well as
through the fistula. With the advancements in surgical techniques, especially plastic
surgery, fistulae are occurring less frequently. The hypospadiological team at Children's
Hospital of Philadelphia (CHOP) reported a less than 5% fistula rate for the island onlay
hypospadias repair technique (Shukla, et al. 2003). If the child is being potty trained, he
is instructed to place a finger over the fistula as he voids from the proper meatus.
Usually, a fistula is left alone to heal on its own for at least 6 months.
Inflammation and edema need time to resolve in order to determine the integrity of the
local tissue before surgical interventions are attempted. Proximal fistulae are more likely
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to heal without further interventions; it is the small distal fistulae that are more complex
and problematic to repair (Shukla, et al. 2003). Artificially induced erections during
surgery help assess for presence of fistula or chordee, while post-op, medications may be
given to prevent erections that damage suture lines.
Diverticula, as with fistula, are not matters for immediate reoperation. In fact, a
diverticulum may be left to revasularize for up to one year. If you are familiar with
diverticulitis of the colon, it is a similar "ballooning or pouching" of the constructed
urethra, and is usually caused by the pressured urination, especially if the meatus has
become stenotic or strictured.
Meatal Stenosis, a narrowing of the meatus, occurs if blood supply to the distal
urethra is compromised after hypospadias repair. Inflammation and scarring contribute to
this difficult to treat complication.
Stricture of the urethra occurs when its lumen (open tube) becomes narrowed
from scarring (Luckmann, et al. 1987. 1708). This condition may even be congenital or
caused by untreated or severe UTI's or injury (including urological instrumentation, e.g.,
Cystoscopy.) Symptoms of obstruction include painful urination with a small-caliber
stream, hyperdistended bladder, infection and fever. Urethral strictures are released
surgically (urethrotomy) or with dilation (Taber's. 1997).
Dilatation, or urethral calibration as it is sometimes called, of the neourethra for 3
months post-op, seems to be effective in preventing stenosis. Regular dilatation as well,
is used to treat chronic cases of stenosis or stricture. If you have ever tired to hold a
toddler down to clean his nose, you would appreciate doing daily penile dilatations. The
metal instrument used for dilations looks very much like a curved knitting needle and the
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medical term for them are "sounds" (Luckmann. 1987. 1160). The idea is to use the
smallest size and progress to larger ones as the tissue is stretched.
Hair growth in the neourethra is not only a problem for men and for boys who
approach the testosterone surges during puberty, but even for young boys. Testosterone
may be used prior to surgery to enhance penis size, and cortisone afterward to promote
healing. Either way, Cortisone and testosterone stimulate hair growth that can contribute
to urinary tract infections and cause irritations. Regular epilation of the hair is done by
the urologist whenever the hair growth becomes problematic.
Bleeding is controlled by epinephrine, cauterization and compression dressings.
Often a "stent" or indwelling catheter is left in the urethra. Do you recall ever viewing a
premature infant inside an incubator in a newborn nursery? You probably marveled at
the tiny tubing used for IV's or for feeding tubes. These are the tiny tubes used for stents
in hypospadias surgeries. Medications are given for the painful bladder spasms resulting
from use of any catheters. Obviously, since genital surgery is very painful, the
pharmaceutical management of pain has been studied extensively in children having
surgery for hypospadias repair. Then, constipation is another side effect with which to
contend from analgesics. Because of a higher number of surgeries in hypospadic boys,
there is a higher risk to develop allergies, i.e., latex or antibiotics, in this group.
Sloughing off of the transplanted skin to the penis is the results of an "unsuccessful graft,
and a great disappointment, requiring additional surgeries.
For the sake of being thorough, post-operative care tips for parents will also be
listed. Much of this information was compiled from direct-to-Email correspondence
between the mothers giving each other information on the web site: mumswith-
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hypospadiaskids@yahoogroups.com. Right after surgery, huge foam dressings secure the
operative site and the youngster will be in two diapers with a "drippy stent." This stent or
catheter is often secured in the urethra with at least one stitch. Rather than a drainage bag,
the stent drains into a second and larger diaper over the first that keeps him dry. The stent
is left intact up to 10 days. Sponge baths until the stent is removed, after that sitz baths
were encouraged. After the dressing was removed at 3 days, neosporin was applied
liberally. These mothers were also told that their toddlers should not fall down, or play
with any ride-on toys for two weeks.
THE FUTURE OF HYPOSPADIOLOGY
Following the research reports of the early 90's regarding the increase in cases of
hypospadias, there has been an odious increase in research literature, especially regarding
the efforts to improve treatment methods. Surgeons and surgery centers are actually
competing for consumers who are becoming more discriminating, knowledgeable and
involved in making surgery decisions.
Surgery techniques alone are improving at a rapid rate as attempts are made to
eliminate the notorious complications of hypospadias and its surgical interventions.
Only to name a few of the latest "innovations" in hypospadias surgery, first, there
is the use of "hydorgel injections" (Sava, V., et al. 2003), for enhancement and
sculpturing of small and/or deformed glans. Photography to trace the stages of
improvement and enhanced photography to demonstrate what the surgeon intends to
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accomplish.
Surgeons in Yugoslavia have reported a technique in which they totally
disassemble the penis into its component parts and then reassemble it correctly (Perovic,
et al. 1999).
The advancements since those reports first caught the attention of the medical
field, as well as researchers in various other fields, have revolutionized many traditional
techniques. For example, a technique for straightening chordee, the "Nesbit", had been
used for years. The corpus cavernosum on each side of the penis were incised at the 2o'clock and 10-o'clock positions. However, it was not known until recently that only the
12-o'clock position (Baskin technique) proved to be the nerve-free zone as determined by
histologic research. Now the bothersome loss of sensation can be eliminated on the list
of complications.
In the past, outcome of surgery was considered failed or successful based on the
development of fistulas, diverticulum, stenosis and residual penile curvature. Now the
standards are becoming so modified, that another component for rating success is
cosmetic appearance. This is good news for those who own genitals with hypospadias.
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CHAPTER 5:
REVIEW OF THE LITERATURE ON HYPOSPADIAS:
PSYCHOLOGICAL CHALLENGES
Man should not strive to eliminate his complexes,
but to get in accord with them;
they are legitimately what directs
his contact in the world.
Sigmund Freud
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REVIEW OF THE LITERATURE ON HYPOSPADIAS:
PSYCHOLOGICAL CHALLENGES
Resoundingly true, the literature on the psychological challenges of hypospadias
does not begin to compete with the vast library of material regarding the physical nature
of the condition, including surgical techniques and the consequences thereof. What is
more, to come this far to gain an understanding and insight into the psychosocial and
sexual implications of being born with hypospadias, it was necessary to travel that path
through the physical challenges, even though, we are just "scratching the surface"
regarding both aspects.
It is very common to hear comments of exasperation from those discovering all
the information on hypospadias for the first time, a real "information overload."
However, most of the overload comes from the medical information. In view of that, I
was rather surprised to find only 18 studies on hypospadias concerning the psychological
dimension and of those, only three were major studies. At the time that Dr. David
Sandberg and his research team, authored their study in 2000, Psychosocial adaptation of
middle childhood boys with hypospadias after genital surgery, in 2000, there were only
two previous studies that had included control subjects (Sandberg, et al. 1995, and
Mureau, et al., 1997). I will compare the Sandberg, et al., study with 3 similar studies.
Following, I will briefly outline 8 selected studies that are pertinent. The remaining
literature I will present for review is the 2003 survey by the Hypospadias and Epispadias
Association (Harrison).
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In l981, a study in Sweden (Operated hypospadiacs: late follow-up. Social, sexual and
psychological adaptation. Svensson, et al.) compared a control group of 36 men, aged 21-34
(M=27.2 years), who had been operated on for appendicitis at the same age as had a study group
of 34 men that had repair of hypospadias (Berg, et al.). Depression, anxiety, and poor
childhood social adjustment (shyness) were recalled more frequently among the hypospadiacs.
In addition, enuresis and "being mobbed" were described in this group as well as a later sexual
debut and fewer total partners. As a side note: the fact that a criticism of this study is that it is
dependent upon adult recall of childhood events, is an issue that offended the men of the HEA.
Their rebuttals were "Hey, we know what we know!" and "We tell it like it is." This
immediately caused a passionate debate on this issue. Adult recall appears to be "sharp" among
this group.
In 1985-86, Money and associates published "Micropenis: gender, erotosexual
coping strategy and behavioral health in nine pediatric cases followed to adulthood."
They investigated the development of social competencies among school-aged boys with
abnormal genital development. Peer relationships and participation in sports and other
organizations were studied. The question of the school social environment motivated the
study, being that the boy was at risk for teasing by peers. Included in this study, was
academic achievement. The basis of this study was that that boys with hypospadias were
at risk of developing a distorted image of body and self. Regarding school performance,
they showed that school attendance was reflected as secondary to urology appointments
and scheduled surgeries. These boys did show a greater increase in teasing by peers, thus
developing adaptive skills.
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Mureau, et al., in l997, studied 116 children and adolescents with surgicallycorrected hypospadias, 9-18 years old (M=14.4 years). They were compared with a
similar control group of 88 with inguinal hernia repair. The only difference found,
including "sex problems," was a more negative perception of their genital appearance and
that they exhibited a poorer psychosocial adjustment. In the study, Psychosexual and
psychosocial development of patients with hypospadias, the researchers recommended
that "all hypospadias patients be seen at least once during adolescence as a standard
therapeutic procedure, to give optimal care to the small group of patients with
psychosexual or psychosocial problems."
Before Sandberg, et al., did the 2000 project, they had duplicated the 1997
Mureau, - et al, - study model, but with 69 selected boys, aged 6-10 years (M=7.6 years)
with either mild-moderate and severe, hypoplastic penises (1989). The results of that
study were positive for lower social competency and behavior problems yet differed from
Mureau's, et al., results on day and night-time urinary continence, finding more problems
in the hypospadic group. In addition, Sandberg's, et al. study included a 3rd comparison
group of same-aged, but were psychiatric clinical subjects. In all findings, the hypospadic
group "sandwiched" between the other two groups. The number of surgery-related
hospitalizations correlated with a lower school performance. Significant too, was the
correlation between school problems and degree of negative appraisal by a parent of the
child's genital appearance. They also observed that "behavioral adaptation was poorer in
those very few boys in whom genital function was compromised, as evidenced by the boys
needing to urinate while sitting." The 2000 study, however, assessed the psychosocial
adaptation of a much larger sample, with a locally recruited nonclinical control group that
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allowed for statistical analyses of socioeconomic and demographic differences between
the groups. Likewise, in a 1995 Mureau, et al., study yet to be discussed, positive
parental appraisal of genital appearance also showed as statistically important.
A motivating factor involved in the Sandberg's, et al., 2000 study, was the
ongoing controversy about the psychological risks of genital surgery - a part of that
debate that I have previously described, regarding the "to-correct-or-not-to-correct"
question. Therefore, the Sandberg, et al., study pulled from an existing data bank on the
largest hypospadias sample studied to date with psychological methods. Under scrutiny
were social competencies, academic achievement, and more behavior problems.
Notwithstanding the importance of these foundational studies, the purpose of this
paper deals more with gaining understanding and enlightenment of a psychosexual
nature. Before I turn to the discussion of additional and more specific studies, let me
remind the reader of the inter-relatedness between the three components under
speculation: psycho-social-sexual. We could further discuss how these components all
interact in the overall makeup of an individual's sexuality, but again, that is beyond the
scope of this paper. We are just concerned with providing an introductory enlightenment
of how males living with hypospadias "stack up" with other males in psychological areas
that contribute to his sexuality. Therefore, I will briefly outline and discuss the results of
8 other studies conducted between 2002 and 1981.
1. Published in Cir. Pediatrics, Jan. 2002 in Spain (p. 3-7), Hypospadias: results and
psychological impact, Santamaria, et al., evaluated twenty surgically-corrected
adults for patient's appraisal of their genitals, their sexual activity, exploration of
patient's genitals by the surgeon, and for psychological repercussions. Results
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among the twenty males: 68 operations, including 19 fistula repairs, 2
meatotomies, and 6-foreskin reconstruction. The average age for masturbation
was 13.5 years and 18 years for first sexual intercourse. On 0-10 scale, penis size
satisfaction was 7.1, degree of sexual satisfaction, 8. Fear before operations and
fear and anxiety before sexual relations were also assessed to score 100% as was
withdrawn character, complexes and shyness at 70%. The study suggests
psychological support for the subjects.
2. A study at Tampere University Hospital, Finland, Sexual and social life of men
operated in childhood for hypospadias and phimosis. A comparative study (Aho
Mo, et al. 2000), purposed that hypospadiacs are sexually less active, make their
sexual debut later, have more negative genital appraisal and have less qualified
professions than other men. The results were that men with problematic genitals
still described a satisfactory sexual life although there were minor differences
observed in sexual life between men operated for hypospadias and other men
seemed not to be due to the circumcised appearance of the penis even in cultures
where circumcision is uncommon.
3. The effect of plastic corrective measures in penile hypospadias on sex behavior in
the fertile age (Schubert, et al. 1989), stated that few reports exist on sexual
behavior after hypospadias surgery, especially regarding the "morphological
results." "In our experience every fifth patient (18.5%) had psychogenic
disturbances of sexual life. The marriage rate was 20% lower than in an agerelated group of the normal population and 24% of the patients have not had any
sexual contact as yet." Moreover, "Severe Penile deviations" was how the
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authors described the morphological causes creating disturbances over time.
Severe penile deviations were reported in 3 out of 16 patients; and only slight
deviation was noted in the remaining 13 patients. For the severe penile
deviations, intraoperative artificial erection had been recommended. In two thirds
of the patients with psychogenic inhibitions, a morphological cause could be
verified. In conclusion, patients with hypospadias operations should be controlled
up to the point of becoming sexually active, if necessary, under the care of a
psychologist.
4. In a study in the Netherlands, Mureau, et al. (1997), found in Psychosocial
functioning of children, adolescents, and adults following hypospadias surgery: a
comparative study, that these patients did not exhibit a poorer psychosocial
functioning and no significant relationships of various medical characteristics
with psychosocial functioning could be discerned. Genital/body perception of
patients ages 9-18 years correlated positively with psychosocial functioning,
although with slightly lower scores. These findings they stated, "are important
for psychologists and
Specialists in the counseling process of hypospadias and their parents."
5.
Psychosexual adjustment of children and adolescents after different types of
Hypospadias surgery: a norm-related study (Mureau, et al. 1997): studied
sexual behavior and genital appraisal of 9-18 year-old hypospadias patients.
Semi-structured interviews of 116 patients of a previous study. Results reflected
that they had a more negative genital appraisal and anticipated more ridicule by a
partner than did the 88 comparison subjects. The study found that hypospadias
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patients were reluctant to seek advice for problems and should be followed
through adolescence to prevent sexual problems.
6. Boys with hypospadias: a survey of behavioral difficulties (Sandberg, et al., 1995),
showed that boys with hypospadias had less social competency than nonclinical
subjects, and increased cross-gender behaviors. A history of hypospadias did not
appear to have a lasting negative impact on the family.
7. In an interesting study using the Rorschach, drawing completion tests and the Gough
Femininity Scale, 34 hypospadic men, when compared to 36 control subjects, showed
a tendency to be less secure in their maleness and a tendency to relate more to
feminine sex roles. This detailed study discussed findings from both psycoanalytic
and endocrinological perspectives. Again, the need for early psychological
preventive measures for hypospadias boys and their parents are stressed. Penile
malformation, gender identity and sexual orientation (Berg, et al. 1995).
8. The following study was important because of its strong recommendation for surgery
in all hypospadic cases, Hypospadias: incidence and effects on psychosexual
development as evaluated with the Minnesota Multiphasic Personality Inventory test
in a sample of 11,649 young Italian men (Mondaini, et al., 1981). Forty-two
hypospadic males and a random sample of 500 nonhypospadic males selected from
the large sample of 11,649, 18-year-old males living in Tuscany, Italy, were screened
with the MMPI, plus a psycho-logical interview and clinical evaluation. The findings
were that the incidence of hypospadias in this group of Italian men is 3.6 per 1,000.
There were no differences noted in the MMPI between the control and the
hypospadiacs. Among the group affected by hypospadias, the number of operations
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and corresponding ages showed no relation to any abnormal global psychological
adjustment. Severity of hypospadias was reflected in a more negative genital
appraisal and the number of operations is correlated only with greater difficulty in
initiating contact with the opposite sex. And regardless of the severity of the
hypospadias, the research team also strongly recommended following up all
hypospadiacs, beginning in adolescence through early adulthood, for early detection
of impaired psychosexual profiles.
The 2003 Hypospadias and Epispadias Association Survey
In early 2003, the world wide web and www.surveymonkey.com finished hosting
two separate surveys in order to have a "between-groups" comparison of a similar-aged
control group to the subjects of study: men with either hypospadias or epispadias. The
2003 Survey Copyrights were awarded to The Hypospadias and Epispadias Association
(HEA) by its author, Travis Harrison. The survey results are used in this paper by
permission of the author and the HEA.
A total of 679 total subjects participated, with 394 (58%) subjects identifying with
either having hypospadias or epispadias (hs/es) (Harrison. 2003). The hs/es group was
subdivided for "within-group" comparisons: mild hs/es (n=158) and moderate/severe
(mod/sev) (n=108); likewise, those in both mild and mod/sev were further divided into
those with or without surgical corrections. In some analyses, Harrison divided both the
study group and the control group by sexual orientation: either predominantly
heterosexual or homosexual. A bisexual or "not-sure-yet" orientation was not included in
the final groups.
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Demographics according to Harrison gave a mean age for the hs/es group as 41.6
and mean age of control, 41.0 years. "Except for Antarctica, all continents were
represented, as those in the hs/es group were from 32 different countries. The United
States had 177 subjects responding, the UK, 43. California and New York both had 20,
the greatest numbers for states within the U.S. Nearly 90% of the study group and the
control group were white."
Regarding genetics, most of the hs/es group had never investigated to see if other
relatives had hypospadias or epispadias. However, those in the mod/sev group were
more likely to check and identify other family members with the condition. The total
hs/es group was slightly more likely to have a graduate/professional degree than the
control group. Within the hs/es group, 4-year or graduate/professional degrees were
more prevalent among the mod/sev group. It would have been interesting to see how
many in each group drew disability benefits and the rational. Details regarding
employment history were queried. While interesting, for the purpose of this paper, the
more pertinent physical, social, and sexual content will be followed.
Surgery questions within the hs/es group were highly specific, only 28% of the
mild group underwent surgery, and 72% of the mod/sev group. Motivated by cosmetics,
men in the mod/sev group were more likely to be planning future surgery than men with
mild hs/es.
Penis satisfaction was assessed to be considerably higher than the total hs/es
group, in every aspect except thickness. Likewise, men with mild hs/es rated their
penises more favorably than the mod/sev groups, who more strongly agreed with
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statements of "surgical scars make my penis unattractive, or "My penis is too small for
insertion during vaginal/anal intercourse.
Sexual orientation, among the control group had 75% self-identified as
heterosexual compared to 60% of total hs/es respondents. There were only minor
differences in sexual orientation between mild and mod/sev groups. Among both groups,
men who underwent surgery were more likely to identify as homosexual than those who
did not undergo surgery were. Furthermore, hs/es heterosexual respondents were less
likely than those in the control group to report genital contact or sexual fantasies
regarding members of the same sex were. Respondents, who were exclusively
homosexual in orientation, were less likely than their counterparts in the control group to
have had intercourse or fantasies about members of the opposite sex.
Sex and relationships category showed little difference in duration of longestlasting romantic relationship between men in the hs/es men and the control group. Mild
hs/es men reported longer relationships than the mod/sev group. Interestingly, the no
surgery groups showed more enduring relationships than the surgery groups. "While
these differences," explained Harrison, "might be partly explained by the age differences,
it is interesting to note that more than twice as many men in the mod/sev group report
having never had a romantic relationship. Men in the mod/sev with surgery group were
slightly less likely than those in the mod/sev no surgery group to indicate no previous
romantic relationship"(2003).
Marriage and monogamous relationships were higher in the control group. Same
for the mild group verses the mod/sev group. Across the board, men who did not
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undergo surgery were more likely to be in some sort of monogamous relationship than for
those who underwent surgery.
Numbers of sexual partners however, were similar for both study and control
groups. Sexual orientation rather than genital condition accounted for any differences.
Significantly the hs/es group, but no difference within that group reported less frequent
sexual intercourse. Again though, with or without surgery made a difference- more
sexual activity for the mild with surgery than mild without surgery. The same was
indicated in the mod/sev group. For those men claiming to be virgins, the rates were
higher for the mod/sev group than for the mild, but still higher for the whole than in the
control group.
Rejection by sexual partners was studied between both groups. Most responses
clarified that negative comments from sexual partners were more common than the hs/es
group recalled outright rejection and a higher number of negative comments. Penis
appearance was the primary reason for negativity in the total hs/es group and consistent
in the mild group; size of penis was primary factor with the mod/sev group.
Perception by others, answered by both women and men, though they had no
case of hs/es, but have sex with men who do and were asked to respond about the sexual
partner's penises. The majority of these respondents indicated that they had never
rejected a sexual partner because of their penis, although women were more likely than
men to reject, and particularly for size or hygiene. Both men and women chose the
ability to obtain/maintain erection as the most important single factor. Next was penis
size. Last, was location of urethral opening. Women placed greater emphasis than men
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on every penis attribute, "Perhaps," Harrison stated, "explaining why women were more
likely to reject a sexual partner because of his penis.
Regarding Intersex perceptions, respondents were asked to indicate whether they
believed they had an Intersex condition though this was not defined due to the subjective
quality of this phenomenon. While only a small minority identified with this trait from
each group, more affirmed Intersex feelings in the total hs/es group. More men in the
mod/sev group too, than with the mild hs/es. Breaking this down even farther, mild hs/es
with surgery and heterosexual, rather than homosexual men, identified with
Intersexuality.
Being very thorough regarding areas of intimidation for individuals whose
genitals varied from other men, Harrison included athletic history, particularly lockerroom experiences. About half of the hs/es group reported being careful to conceal their
penis from teammates, compared to only 30% of those in the control group. The hs/es
men recalled that as adolescents, they had quit athletics out of fear that teammates might
see their penis, then endure teasing. The mod/sev group, who were less likely to play
sports than milds, reported these fears more profoundly as they did actual instances in
which comments were made publicly about their being different. Surgery again was a
factor, making them less likely to participate in these activities. More than 90% of the
control group participated in high school athletics, compared to less than 55% in the total
hs/es group.
While members of the total hs/es group appeared to have a higher incidence of
emotional, physical or sexual abuse than the control group, sexual orientation showed to
be a more obvious indicator for abuse than did hypospadias or epispadias.
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Shame and embarrassment, expressed in greater numbers among the hs/es
members, for physicians, opposite or same sex, even sexual partners, to view their penis.
Being pee-shy is one way this embarrassment is manifested. While those in the control
group even indicated arousal if others saw their penis, locker rooms and public restroom
are very much a challenge for those with hypospadias or epispadias. The extent of shame
felt over being different in such a critical organ prompted a greater number of these men,
predominantly mild with surgery and mod/sev, to confide that they had frequent or
occasional depression, contemplated suicide, or attempted suicide because of their penis.
Even depression for non-penis related reasons were slightly more common among the hs
group than the control group.
DISCUSSION OF PSYCHOSEXUAL FACTORS
There is one factor that needs to be discussed in the sexual development from
boys to men, especially when addressing the hypospadias condition; these boys
frequently question their self-image. That is a topic often overlooked- the variable of
early Vs late maturation. In addition, these boys are affected by surgeries, treatments and
complications. In the hallmark study done by J.M. Tanner on sexual maturation, he
found that overwhelming feelings of inadequacy, negative self-concept, and especially,
feelings of rejection were commonly found in boys who were slow to physically and
sexually mature. Even after a follow-up of the boys in the study, "the late maturing
boys still tended to be more eager, talkative, self-assertive, rebellious and touchy"
(Tanner. 1973. 38).
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Males generally have a self-image that makes them particularly vulnerable to peer
influences. Teens especially, see any physical difference from the peer group, including
variations in growth and development as reason to single that individual out for scrutiny.
The difference is especially difficult to handle when it involves the very organ that places
them in the group in the first place. The boy who is at an unfavorable contrast to his
peers is quick to be rejected and ridiculed. This becomes a traumatic experience because
it happens at a time when friendship patterns are also going through developmental
changes. For him, he is focused on discovering his own identity. Gottman and Mettetal
(1987. 328) stated that "Teenage boys tend to worry about the size of their bodies, and in
particular, the relative size of their penises."
The young, story contributor, identified as "N," in chapter 6, had a conversation
with an adult male on the HEA group site, in which N had shared about his penis size and
appearance. The following is the adult's reply:
Welcome to my world. Your situation is almost identical to mine, albeit, my operations
did not stop until I was fourteen. I grew up knowing that I was deformed and different,
and I hated it. I loathed my parents, the doctors and myself. My penis is very ugly and
small by any standard. Overcoming all of that wasn't easy. But you can take control of
it. There are two main issues you need to deal with:
One, your penis is ugly, therefore you feel ugly. Two, you think an ugly
penis will ruin your chances with the ladies. Both couldn't be farther from
the truth. We live in a society where no one sees your penis unless you
choose to show it to him or her.
Are you well groomed? Do you exercise? Do you dress nicely? Your
penis is only one part of your body. You have a lot of control over how
you and others perceive the rest. Knowing you look good goes a long way
towards improving your self-confidence.
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As for the second part, that's the real issue, isn't it? Obviously, you feel so
self-conscious about this, that you think sex will never be an option. My
advice her is a little more frank. Learn to be a good lover. Your penis is
deformed, but what about your hands? Your tongue? Your brain? There
is a lot of information out there that you can use to educate yourself with,
and I'm not referring to all those awful porn-pop-ups on the Internet. You
can do a lot of things to please a sexual partner, and very few of them
involve your penis. A woman who has been charmed, romanced, and
pleasured several times over is not going to care what your penis looks
like, or even if you have one at all.
Another thing to keep in mind is that everyone looks different. When the
time comes, you can let your lover know that you look a little abnormal
before you show them. That's what I used to do, but eventually I discarded
the practice. None of them cared. The ones I didn't tell before hand didn't
even blink, including the woman I married. I know you are thinking about
cosmetic surgery. As labeled, that's all it is, cosmetic. An appeal to
vanity. An unnecessary one at that. Hopes this helps.
The concept of penis size is depicted in primitive cave drawings and in ancient
art. The size of erection and the ability to be a lover have become synonymous. He soon
falls victim to a self-filling prophecy. If he or his sexual partner determine that his
phallus is inadequate, it may as well be true, but not because of any physical facts or
limitations, but because he will act as if this is true.
In the erect penis, there are many variations, but one advantage of the smaller
penis over a larger one is that there is a greater volume increase that typically occurs
during an erection. Besides that, the greatest sensitivity in the vaginal canal is
concentrated in its outer portion (Crooks, and Baur. 129).
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Sensitivity is another issue with hypospadias. Besides hygiene, the benefits of
circumcision continue to be debated, especially regarding erotic or functional advantages.
Masters and Johnson (1966) investigated these questions and found that there were no
differences. The foreskin of an uncircumcised man is retracted during coitus, so the glans
is fully exposed. On the other hand, it might be assumed that the glans of a circumcised
man is less sensitive due to the toughing effect of constant exposure to chaffing surfaces.
Men who have been circumcised when sexually mature, have reported both cases, there
are physiological differences in sexual arousal, such as a decrease in the sensitivity of the
glans following circumcision, or that there was no perceivable differences in sexual
excitability (Crooks and Baur. 1999. 132).
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CHAPTER 6
THE GOOD, THE BAD, AND THE UGLY:
EXPERIENCES WITH HYPOSPADIAS
God will not look you over for medals,
degrees or diplomas,
but for scars!
Elbert Hubbard
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A's STORY: URINALPHOBIA
Friends, cousins, and a brother had looked at A with admiration. The spot on the
concrete where A had urinated was much, much farther than where the streams of the
other boys' reached, quite a feat for a five year old boy.
Today, as 26-year old A recalls that peeing contest, he wonders why one of those
cousins couldn't out-pee him. Especially, since that cousin too, as he later learned,
although milder, had hypospadias as he did. Another realization now, is that the reason
his stream went the farthest was because of a very small urethral opening. In fact, when
he had been very young, A had had such urinary difficulties that his mother had taken
him to an urologist. Just a "little incision to widen the urethral opening" was performed.
Currently, A's meatus is still very narrow, perhaps only a couple of millimeters in
diameter. Plus, he was born with the urethra opening on the underside of the corona and
with mild chordee. No other surgery was obtained, other than that one "tiny incision."
No other physical problems exist except a tighter skin on the underside, which becomes
tender with erections. Of course, patience while emptying the bladder and some spraying
are on going problems.
As a child, A's parents did not really talk about hypospadias since A never asked.
Around the age of 7 or 8, his mother used the term "phimosis " when she explained about
going to the urologist to widen the opening with "a cut" so the urine could flow. She also
explained that there should be no further problems with it, and if there were, to let her
know. The name "hypospadias" was not mentioned.
When A had reached the age that his sexual development was obvious, his mother
had asked his brother with whom he was close, "What's going on with A sexually?" She
was pleased with the report that everything was okay.
But by that time, A had already become withdrawn and alienated from others.
That introversion seemed to start around the period of 7 or 8-years old. Reasons and
circumstances are vague, but A recalled becoming very "centered" on the appearance of
his penis. Yet before that time, there are no recollections about being shy or selfconscious regarding his penis. Sometime, after the age of 8, A started to become
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extremely shy and take extreme caution to prevent others from seeing his penis.
Consequently, he was becoming increasingly "pee-shy."
One event during that period sticks in his mind. There was a prolonged, duration
of 3 months spent in a hospital for a severe sinus infection that eventually required
surgery. After that, A was acutely aware of feeling "weak, different and ugly." He had
even verbalized these feelings in the form of questions. Although there had been no
particular adverse experience, it was there in A's mind, that the concept of things going
wrong in his life, always could be blamed on having the condition of hypospadias. Selfdoubts and depression began to add to his feelings of alienation. The feelings got so bad,
that A doubted that his phallus could rate even being considered as a penis. Whatever it
was, he did not claim it as his own.
In contrast to these thoughts, A began to masturbate rather early, around the ages
of 6 or 7. After that, there was an early onset of sexual maturity; ejaculations occurred by
age 11. Experimentation began with comparing with other guys and early sexual plays
happened then as well. Except for his own initiatives, he describes his early sexual
education as inadequate.
But A's parents did "not have a clue" what their son might have needed, whether
education about sex or the condition that was causing him so much private anguish.
During the 80's, it would have been unlikely that a 40-year-old mom and a 47-year-old
dad, living in Armenia, to have the foresight to perceive A's need for education, or even
for counseling. The "rules of society" had not included the values of sex education, notwithstanding the sensitive needs of a boy with hypospadias.
Around 18 though, A had brazenly initiated a conversation with his mother
regarding his genital anomaly. She had explained again what had happened in the past
with the urologist. That was when she mentioned "hypospadias."
She had informed him that the only expected problems might be with urination.
She appeared to be well informed about the condition and the urologist had advised that
surgery would be totally unnecessary during childhood. Surgery could, however, be
performed later if needed. A informed her that he was feeling "quite uncomfortable with
the appearance and functioning of his penis."
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Mom expressed regrets about not paying enough attention to his problems while
he was growing up, generally blaming herself. Perhaps, she still feels that way, but since
then, she has kept those thoughts to herself.
Unfortunately, after that A had refused to be as open about his problems, other
than indicating that there "were no problems." His dad had had very little participation in
any discussions regardless. But by the time that A had initiated the talk, he was in his
third year of medical school and had already researched the subject of hypospadias. A
had the concept that this discussion had occurred "a little late," but it was the last time
that he would ever openly discuss his condition with his parents.
Closer to his mother than to his father, A still enjoys a rather close relationship
with both of his parents. Hypospadias, he believes, or the psychological state of mind
that he was in, had previously created a distance between he and his parents, especially
with his father. During the past two years though, that relationship has been growing.
Currently, A describes himself as "very well adjusted" with his genital appearance
and does not consider hypospadias any problem. Even though he realizes that, with the
condition, there may be functional problems that advance with age, especially if there is
any increased pressure in the bladder due to the narrow urethral opening.
During his early twenties, awareness came that most of his described problems
were not as serious as he thought. He recalled using them as "just an excuse to hide
bigger emotional problems," and that he had related to the "concept of maladjustment to
social life." A says today, that he does not have problems with hypospadias, but with
"some psychological issues." Whether or not these problems and issues have any direct
link to hypospadias or not, is actually questioned. The biggest, related "inconvenience"
that he deals with right now is being pee-shy. "Getting better though," he reported.
A does believe that hypospadias resulted in a total inability to create and maintain
any type of relationships. However, from his difficult period, he still maintains some
good friends, though he doubts that they had any idea what was going on with him at the
time.
A remains single and considers his sexual orientation to be bisexual. He
stated regarding this issue, "the question of sexuality is still one of the biggest
unresolved questions for me. I have had sexual relationships with women and
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with men. My first adult sexual relationship with a man was at the age of 19 and
with a woman at the age of 21. Hypospadias does not affect my ability to have
sex in any position or in any different types of sex - vaginal, anal, or oral. I have
never had any negative feedback from my partners. However, I still find it
extremely difficult to open up with people and let them in my life. As a result, it is
much easier for me to engage in anonymous sexual relationships."
Overall, A indicated that hypospadias had not allowed him to learn from good
experiences and that he had focused on bad body image. He described it as "tying it in his
mind to all progress as a person, with resolving the issue of hypospadias with corrective
surgery." As a result, one thing he says he regrets the most is "falling back badly in the
areas of education, career and in personal development." Being prepared to address
adult issues are the biggest challenges he faces today: job-related situations, making
purchases, and creating relationships. A was able to enthusiastically state that "I am
happy, since today, I have a chance to learn all that."
A is active in the HEA, attending to the concerns of others who ask for advise and
just need to talk. He firmly believes in the power of support "with other guys with
hypospadias, because we can relate to the emotional struggles."
Finally, A is currently involved in a very fulfilling relationship. This is described
as a situation where they became best friends first; real supportive pals before it ever
became sexual.
"That…is rewarding!"
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B's STORY: "HE'S HAVING SURGERY ON HIS ARM."
I was born with a mild (coronal) case of hypospadias. The urethra opened at the
junction of the shaft and the glans. I went through the first six years of life with my
original, uncorrected penis before having surgery. To the best of my recollection, there
were no major problems before having surgery--no chordee and a fairly complete
foreskin, just a urethral opening lower than it should be. Of course, my penis seemed
completely "normal" to me, since it was all I had ever known.
Surgery at age six was traumatic. Fortunately, much of the detail has faded from
my memory, but I remember extreme embarrassment about the entire ordeal. I am sure
that much of the embarrassment stems from the way in which my parents handled things
(though they meant no harm, they had little information from small-town doctors and
therefore did not make the wisest decisions).
I remember my parents privately telling my teacher about the surgery and
encouraging the teacher to lie to the class and say I was having surgery on my arm. Kids
would ask me what was wrong with my arm, and I couldn’t answer, because I wasn't in
on the lie.
Obviously, the full truth would not have been appropriate, but it sent a signal to
me that it was something of which to be ashamed.
I also remember lying in bed in the hospital after surgery (I was in the hospital for
several days) on my back with my legs propped up in some sort of contraption so I
couldn't damage the sutures. I was completely naked underneath, except for a blanket
draped over the contraption, exposed to nurses, relatives or anyone who walked into the
room. I felt vulnerable and somewhat violated in that position. I also remember the
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catheter and my refusal to obey the nurse and just "let it go" and pee while I was lying in
bed.
Primarily, I remember the DRAMATIC change in appearance once I finally got to
see the finished product after surgery. Foreskin tissue had been used to bring the opening
to the tip. I can imagine the surgeon could have said something like, "it an't pretty, but it
works." That caused a sense of confusion, shame, and even a sense of loss for what I no
longer had. To a large extent, those feelings remain with me 20 years later.
I went into all the above detail about surgery to help people understand that "age
six is not a good time for surgery." A six-year-old is old enough to retain most of the
ordeal in his long-term memory, but not old enough to really understand what is going
on. I often wonder if I would have gone through childhood with better psychological
health if the surgery had been performed when I was an infant or toddler, or if surgery
had never been performed at all. I suspect the answer is yes, though I'll never know.
I have never discussed my hypospadias with my parents. I regret having the
surgery to begin with, and I also regret the lack of follow-up during childhood and
adolescence. Children are generally reluctant to go to doctors, especially if they recall
having surgery on their genitals and don't want to do that again, so there is no incentive
for children who have had hypospadias to tell their parents if problems arise. The only
solution to this dilemma is regularly scheduled follow-ups regardless of whether the child
says every-thing is okay. Overall, I have a good relationship with my parents and having
hypospadias never affected that. Other than some fear in revealing my condition to
partners, it has not affected other relationships either.
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Following surgery, I became intensely curious about other boys' penises. I think I
wanted to see if anybody had a penis similar to mine. I compared with all the other boys
in the neighborhood, but nobody had one like mind. I began to sexually mature and
ejaculate at 12. During adolescence, friendly comparison progressed to sexual activity,
virginity lost at 15, and though it took several more years before I would admit that it was
no longer just curiosity, and I was in fact, gay. There have been about 7 different sexual
partners since then. Nonetheless, I have long suspected that hypospadias was a
contributing factor toward my sexual orientation.
Now, at age 26, I have adapted fairly well to the situation. There are some
physical problems, but they are relatively minor. I am able to urinate standing, but
occasionally urine comes out in multiple streams or at a weird angle, making it nearly
impossible to accurately aim. Besides the glans appearing somewhat separated, surgery
left me with an abnormally large urethral opening; without exercising great care in the
shower, soap or shampoo can easily enter the opening and causes extreme burning.
Additionally, the underside of the glans sometimes hurts if my penis gets constricted just
so or the two halves of the glans gets accidentally pulled, causing pain. I think these
problems result partly from a suture that eventually came undone after the surgery. Any
follow-up did not extend long enough to catch this problem, and I was too shy and
embarrassed to bring it up as a child. Now, I don't know that I would trust a surgeon to
touch my penis.
Thankfully, the physical problems in my case are relatively minor; I have dwelled
more on the cosmetic appearance, which I find very unappealing. Fortunately, I have had
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enough positive experiences with sexual partners to gradually gain more confidence that
it's not as big a deal as I think it is.
One time I did experience rejection, but the guy never saw my penis; when I told
him about it, he simply "freaked a bit and said 'gross'!" However, one sexual partner
praised my hypospadias, saying that he felt that the unique shape of my penis made sex
more pleasurable for him. Overall, my experiences have been positive and I am happily
involved in a committed relationship of six years, that is both emotionally and sexually
fulfilling. However, I still cannot shake the sense of loss for the natural, albeit imperfect,
penis with which I was born.
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C's STORY: "HOW I BECAME A MOTORHEAD"
I was born some forty years ago with a midshaft hole, a sub-coronal hypospadias,
undescended left testicle, inguinal hernia and various other minor defects. The extra hole
was sewn shut in infancy. At six, I underwent a repair of an inguinal hernia on the left
side, exploratory surgery to locate the left missing testicle, and surgery to relieve a
bladder outlet obstruction that was causing hydronephrosis, and in addition, poor bladder
control bordering on incontinence. Two different meatotomies were performed in the
mid 60's, to open the meatus due to a slow stream. Nothing was ever found of the
missing testicle, but I underwent subsequent procedures, (VCUG's) to monitor kidney
function and assess the amount of damage done prior to the bladder surgeries.
These procedures went on until I was 19 years of age, so even though
hypospadias was not the focus of my hospitalizations, my life has been just as
medicalized as some others who underwent repeated repair attempts on their hypospadias
condition. All of my pediatric examinations growing up, of course, reinforced the
difference I felt from other boys who had normal penises and two testicles. Until I was
19, along with chronic kidney infections; I thought antibiotic tablets were a food group
when I was in grade school.
Surgical outcome was that I retained function of my bladder and good continence,
as well as diminishing problems with kidney infection. As I mentioned, Tetracycline in
high doses for ten years has permanently damaged my tooth enamel.
At the time, my mother was the one who explained everything and was always
there for the procedures. My father was very strong but silent. I mistakenly assumed this
was due to feelings of shame directed at me, and my relationship with my father
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deteriorated to a low state during my adolescence. On the other hand, nothing was ever
held back, and my condition was discussed openly, sometimes at family dinner in very
mater of fact manner. I never felt that I was unable to discuss this in my home. In
hindsight the decisions my parents made regarding my course of care were good ones,
and none of us has had any regrets. Mom was not afraid to fire a physician who pissed
her off or did not address her concerns.
Still, I count my blessings. My parents had the good sense not to have any
cosmetic procedures done on me other than removal of the dorsal hood foreskin. I have
no chordee, strictures, or scarring. The only complaint I can voice is the small caliber of
my urethra meatus; it can take a while to pee or pass semen. The abnormal anatomy
under the glans is very sensitive to touch, and while I am not saying that what I have is a
Frenulum, I know none of my circumcised friends have that extra sensation there. I
would not want anything done to change what I have. I went through all that stuff you
would expect a kid with one testicle and a mushroom pecker head would face growing
up, but most of the doubt and pain was self-inflicted. It would have been better had I
known someone with the condition that I could relate to, but when you live in a town as
small as mine was, the statistical odds of that happening were nil, even if people had been
willing to talk about this in the first place.
There was a period in my teens where I had some ambiguous feelings about my
sexual identity and adequacy as a male. I knew I could not compete with the jocks, as I
felt the normal PE class dress outs were enough of a risk. Had I gone out for sports, my
risk of being "exposed" would have been too high. I knew I could never take out
cheerleaders, so I became a "motorhead." Most of us were the skinny, funny looking or
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fat guys that hardly fit the teen Adonis image. We dated all the chubby buck-toothed
girls nobody else wanted to be seen with, and I spent very few Saturday nights at home. I
still felt somewhat less "manly" than the jock types in that I found myself wishing I had
one of those beautiful, perfectly shaped penises they all seemed to have, and the perfect
pair of balls. Now that I look back on it, I had more social life than the jocks did because
I didn't have the demands on my time that sports imposes, and my standards for
companionship were more realistic.
As a teen, I was tormented with all sorts of emotional issues, not all of which I lay
blame to hypospadias. I was fighting a battle to gain acknowledgment of acceptance
from my father, confused about my sexual identity, and acting out in peer relationships in
self-destructive ways. I was sure there was something wrong with me when I was four
years old. I did not feel like a boy, and knew that I was not a girl. I had feelings of
mixed sexual identity for most of my life, and the issue of gay or straight was not the
main focus, although because of the social implications of being gay in a small town, it
was clear that I could not stay there if it ever came down to being gay. Relationships
with peers tended to be manipulative, abusive and always resentful of others who had
normal anatomy and no inner demons I was feeding at the time. I learned to hate the boy
next door, because he had naturally that which I could never have; a normal penis, a left
testicle and no questions as to "what the hell am I?" in his head. Sexual activity was
limited to heavy petting with females, and mutual masturbation sessions with males
designed mainly to sate my curiosity regarding male anatomy, and gain the satisfaction of
knowing that the "normal" kid I was with had smaller genitals.
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I left home for college at the age of 17, and lost my virginity with a 27-year-old
librarian at the school. While this was satisfying on a gratuitous level, I became more
and more dysfunctional as parental disapproval of the age difference built up, and I failed
out of the institution academically. I decided to become celibate and academic because
now the confusion and gender identity crisis was at a peak. I shut down emotionally and
devoted every waking moment to school and to study. I began to have nocturnal
emissions for the first time in my life from total lack of sexual activity. For 3 years, I
excelled in my studies and found something new in life, success. I actually completed
things I started and obtained an excellent vocational education, finally having the grades
to enter an Ivy League university in 1983. I felt like a person in my own right, and now
that I was able to see a future, I began to seek companionship, and broke my self-imposed
cocoon of an asexual existence.
I now understand that the feelings and confusion I endured all these years is
universal among the Intersexed. It began with writings by Intersexed individuals that
brought home everything I had known since I was four years old. I hid in my room and
alternately drank until I passed out and cried for a week. I knew from then on I would
survive and thrive. I finally knew who and what I really was. My anger and resentment
was gone, and I began life as a different person when my hangover subsided. I never
drank again after that breakdown.
I became infatuated with a shy girl in a physics class, and in less than a year we
were in a full blown sexual relationship, and married a week after we graduated. That
was l987, and we are still very much married and happy together. I have two sons, (both
normal) one is 12 and the other is a year and a half.
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My sexual education was standard suburban, Midwest fare from the 60's. Mom
got some books from the library, and explained the mechanics of sexual intercourse. A
very astute 6th grade science teacher was very patient with me in explaining why the
biology books we were using had "incorrect" illustrations of the male reproductive
system. I heard the term hypospadias from him for the first time.
Puberty began at about ten and a half, and sexual maturity at about 12. I
remember shaving just before my 14th year. I was constantly teased in high school by
other boys about having a very large penis.
I have been married almost 14 years to a woman that had never heard of
hypospadias and cryptorchidism until I told her, and we went to the OB GYN about it
when we knew our baby was going to be a boy. He is 9 now, and was born perfectly
normal. One son did have an inguinal hernia repair. As far as I know, no one else in the
last three generations was affected with hypospadias.
Sexual orientation is still a source of confusion for me. I am happily heterosexual
as a married man, but still have an inordinate curiosity toward male genitalia. I do not,
however, have an interest in homosexual activity. My wife satisfies my physical, sexual
nature, but not the duality of my emotional identity, so I have found through writing and
involvement with the HEA and the various Intersex community sites that, as I grow, I
find a path to what is of acceptance and normality for me. My wife understands and
gives me the space needed to devote time to running HEA as the executive director.
Has hypospadias affected sexual behavior? Only in that the blunt and wide glans
makes lubrication necessary for penetration, and oral sex has never been successful for
me due to the size of the glans, because of some chordee and overall erect length, our
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favorite position is woman on top, as she can control the tempo and depth of thrusting. I
have had no anal sex experiences.
I think that I am as well adjusted as I am today, because my clique in the teen
years was more accepting of people for what and who they were, rather than what they
looked like. I had only one comment from a girl about my hypo, and she thought it was
"kinda cool," and never made a comment about it again for the next three years we dated.
She would say "I bet I can find that nut if I look hard enough for it," as an excuse to
grope, and of course, I'd give her about three hours to stop that :-). We simply made the
testicle thing into a game. That's how we dealt with it.
Presently, my relationship with both parents has never been better than it is now.
I came to realize that my father's emotional limitations were wrongly interpreted on my
part as rejection and shame. I know now that he did not have the strength or capability to
express what I needed to hear as a child, and one look at the way he tries to "do it better
this time" with his grandsons is all it took for me to forgive him. I do believe he feels we
have lost time together and I know he regrets that.
I think the best thing any of us can do is to provide outreach to the younger guys
who can still grow up with some perspective if they get help in time. I am not a shrink or
doctor, but I know I can answer questions and listen, as someone who has "BEEN
'DERE, DONE THAT!"
Hypospadias
S.K. May
D's STORY: "HYPOSPADIAS FASHION SHOW,
THE CATHETER AND LEG-BAG ENSEMBLE"
Between the ages of 6 and 8, D had more concerns on his mind than the subcoronal type of hypospadias with which he had been born. For one thing, there were the
other kids at the Orphanage to contend with. Two other brothers had "normal" genitalia,
but coping with being different had become a way of life, when that is all you know and
understand at such an early age. Then, back with his mother and stepfather, the family
moved back and forth across the country. Finally on his own, D chose to settle outside of
the U.S.
Hypospadias was not openly discussed with D as a child, nor did he feel as if
improvements of his situation were any priority with his parents. Of course, he realized
that his penis was different, but until he was in a high school gym class, he did not know
this difference had a name. Pretty good at coping with the condition, D had not been
prepared for the teasing that is notoriously abusive in a high school gym class. What a
place to find out that you were born with hypospadias!
On the other hand, D recalls that he had been "somewhat prepared" for the hostile
jungles of high school, by of all people, his mother. Not very trusting of her since the
Orphanage placement, the way she reacted to the harassment at school totally unnerved
him. She had explained that there had been no money or insurance for any corrective
surgeries back in his early childhood, and let it go at that. Then she acted just like the
tormentors at school, she teased him! "You do piss crooked, D! And you can't guide that
thing at all!" When he had needed her the most, she had humiliated him!
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S.K. May
Early training about sex is described as "lousy." He learned about sex from kids
his own age. At 13, D began to mature sexually and did his own "self-explorations."
Taking matters into his own hands again, D began to look into corrective surgery
for the hypospadias as a young adult. By the time that he actually started having surgery,
D was 25, had already married and had 3 very normal sons. Still, a motivating factor in
initiating the surgeries was that, his wife and mother had continuously made light of his
manhood, openly reporting to others that he was "deformed" or could not have children.
Too, his small penis size became a source of contention with him.
Genital surgery for an adult male is especially traumatic even if it is elective. First
there was Urethroplasty (reconstruction of the urethra) with extended microsurgery to the
penis and gland. Then repair of 3 fistulas. Walking with a catheter bag strapped on his
leg, and all the intense pain is still vividly fixed in his mind. Urine passage was rerouted
from the urethra to the scrotum to allow the neourethra time to heal. Surgery in this area
requires a great deal of patience with a rather slow healing time. D recalls his surgeon
commenting that it was a "good thing that he was not an alcohol consumer, or he would
never have healed so fast." Now, residual scarring and tenderness on the dorsal side
especially keep these memories of surgery alive. The surgeries went on for several years,
10 in all. The trauma and shock to his system reached an all-time high, when he was later
diagnosed with having an insulin-dependent type of diabetes mellitus.
After all this, the marriage fell apart. His wife was still not happy with his penis
and finally told him what she had really thought about it on their wedding night.
Afterwards, D recalls realizing that she must have seen plenty of other penises if she
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could be such a connoisseur of penises. A total of 4 women conveyed rejection of D's
hypospadic condition and size, including a second wife.
D describes a great deal of pain during sexual intercourse with women. The
hypospadias condition caused him to feel "like an invalid." It was difficult to perform, or
even relax and enjoy being stimulated; "If a partner attempted to suck on the glans, I was
afraid her teeth would rip the urethra opening on the side!" Urination even had become
painful. The dorsal side of the phallus would ache for an hour or so following urination.
Erections caused the opening of the urethra to stretch enough to cause pain, so erections
were even avoided.
D states that he is satisfied with the many operations that he had, especially the
one when he was 25. The relationship with his mother is still not good. She still remains
insensitive to what he endured as an adolescent. Even at his current age of 55, D refuses
to inform her about the surgeries that he had twenty-five years ago. "She has no idea and
I am not going to tell her either." For the past 17 years, D has been living with the same
partner in a gay relationship.
"This information is confidential and is for medical research only."
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S.K. May
E's STORY: "WHAT HYPOSPADIAS?"
E was born in NorthWest Scotland in the late 1940's. A mildly moderate
hypospadias presented with the meatus on the underside shaft, about 1/3 down from the
glans. No other family members shared this genital anomaly, at least, none of which he
was aware. He has one son who was born with normal genitalia.
His parents offered no explanation whatsoever about his condition or was
corrective surgery ever considered, in other words, it was "ignored completely." To him,
"ignoring" such an obvious difference was "disastrous." Today, he is still in the dark
about what his parents think, or might have thought back when he was a child, since the
topic of hypospadias was never once discussed.
The effect that hypospadias has had on other relationships has been that E was
very nervous about "commitment" and it affected the sort of relationships he sought: "I
always tried to go out with the girl that would probably turn me down anyway, so that I
didn't have to blame myself. Eventually, it became easier to go out with guys."
He states that he never had any kind of sex education. E had participated in
mutual masturbation at school. He recalled experiencing a growth spurt about 13, when
ejaculations occurred. A bad experience was that at the age of 10, while using communal
showers, he was singled out as being "different." At 17 years old, E became sexually
active with his first girl and they dated for a whole year. Several other girlfriends and
some boyfriends followed over the next few years.
E married at the age of 24, divorced at 31. Mainly bisexual for 10 years, he
recalls that he had many partners. Then mainly gay for a while. Then remarried at 44
and remained monogamous for 5 years before returning to a bisexual pattern. Now, E
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identifies himself as bisexual in orientation since he struggled most of the time to be
heterosexual and "failing," now accepts the orientation of bisexual. He has been married
twice, a first marriage lasted 7 years, but with no children. He divorced a second wife of
12 years and that union produced 3 children.
In regards to the effects of hypospadias on the mechanics of sex, E stated, "Not
much effect as far as I am aware, but how would one know? I don't have a Frenulum, so
presumably my sensations at orgasm are different from men who do. How do I compare
that?"
He cannot recall any good experiences connected to having hypospadias, except
finally finding the HEA groups last year.
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S.K. May
F & I: "HONEYMOONING WITH HYPO"
Note: This project has brought us so close together! We have been
working on it since Friday, openly sharing our feelings and attitudes
about it. Together, we have found things we did not know about one
another or our relationship. This is our joint response.
We have tried to be brief, but there is so much to tell for the first time
ever! Some responses are ours together; others you will immediately note
are his alone or mine…and you may want to refine it or ask us, both, or
one or the other, more probing questions. We will be happy to answer
anything you want, elaborate on anything that is not clear, or hear about
any ideas you may have. We know that this is a research project in
progress, and that needs and questions will evolved over time. You may
count on us, as needed. For us too, it has become a starting point to open
up and explore something that, together has been a source of curiosity,
experimentation and total happiness as a recently married couple. Thank
you for showing us these new possibilities! The results of this study will
speak for themselves. Sincerely, F and I
F, who is presently 33, was born with his urethral opening on the shaft, about 3
inches from the scrotum. While the flaccid length of his penis is not that impressive,
when erect, it measures 9.25 inches and has a diameter of 1.75. There is a pronounced
curvature, almost 90 degrees from scrotum to tip.
There are no known family members with hypospadias, but then, "spotty family
relations" are not especially conducive for sharing such personal information. F's sister
has mentioned that she does have an unusually long clitoris, therefore, some extra
androgens could be suspected in her fetal development.
According to F, his parents did not explain anything to him about his
hypospadias. Corrective surgery was never discussed, not even for the chordee.
Generally, they were non-supportive. At present, he and his father are not on good
speaking terms. The same is true regarding his stepmother, "and she has nothing
interesting to say anytime."
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S.K. May
When a stepmother, twenty-two years younger than his father, came into the
family, F was already a "well-developed" teenager. He recalls how curious this stepmom
was about the size and shape of his penis, and as she had explained, "It was only natural
that a mother or stepmother should see to the child's normal development."
I relates this part a bit more bluntly: "There is a strong suspicion that there was a
little more than morbid curiosity on her part, maybe more like abuse, especially when F
was showering and his father was out of town on business trips, that's when her interest
seemed to peak. I add that this is an area that "F does not want to talk about."
As a child, F was placed in a Catholic boarding school, where the matter of sexual
education was "forbidden" or viewed as areas where abstention should be applied.
"Early, middle or late, any useful sex information was non-existent."
F recalls that he avoided sports that required dressing and undressing in locker
rooms. Even today, locker room situations make him very uncomfortable as he has
developed a bad case of being "pee-shy." His small, flaccid size and chordee make it
difficult to direct the pee stream, so F passes the urinal and chooses to pee sitting down.
As a boy, he even avoided peeing at the same time as other boys, and that avoidance still
persists with other men, such as business associates.
F was sensitized about body image as a teenager when participating in "size
contests" where erections were measured. The dimensions and pronounced chordee that
he presented, became the source of "endless jokes, name-calling, and other mortifying
harassment from the other boys."
During college, F was expecting to lose his virginity, but upon undressing with
three different dates, the difference in appearance was noticed and they were turned off.
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S.K. May
"And…" adds I, "most likely, making fun behind his back at their perception of his
"inadequacy." That was when F made a firm decision to remain a virgin until marriage
was finally and firmly consummated.
F is tall, muscular and of an athletic build. He experienced an early and rapid
maturity, growing pubic hair and reaching 6 feet by the age of 12. Thereafter, he slowed
down a bit and continued to develop on into college years. His first erections occurred
around 6th grade and offer an interesting story:
A very untimely erection "happened" one day while making a presentation of a
school project in 6th grade, when the teacher forced him to continue standing straight and
face the class. The girls snickered and it was an overall traumatic experience. A display
of tears and terror about going back to school made his parents opt for an all-boys,
boarding, catholic school. In retrospect, it made matters a lot worse. Involuntary
ejaculations or "wet dreams" in junior high school and into high school, earned
punishments from the priests at the boarding school. Masturbation during solitary hikes
in an attempt to tame the dragon was of little effect.
Sexual experimentation became quite intensive once F was away at college. Very
frequent masturbation in many ways, and with incessant use of a mirror for a closer look
at his penis. Then there were fumbling attempts to use objects such as finger splints,
homemade "wire cages," etc. to attempt to straighten his penis out. Obsession with porno
movies was also to see what other men looked like.
"Heterosexual, monogamous, happily married and no children yet, " is how F
sizes up his sexual state. For the present, both F and I, are content with the status of his
penis. Still, they have checked with doctors regarding surgery in the event that those
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problems arise when they are ready to start a family. Their medical opinion was that
surgery would not be necessary to obtain a pregnancy, however they both say they will
"re-visit the topic if, when they are trying, there are no results."
F describes a good experience connected to his hypospadias as finding an
understanding, experienced and marvelous wife who thoroughly explores sexuality and
enjoys the unusual features of his penis. "In fact," adds F, "the loss of my virginity on our
wedding night was with a wife far more experienced than I, so she led the way very
patiently all night. I did not know what to do, what to expect, and was totally at her
command. Finding her is my triumph in life for she has taken me to ever-higher moments
of happiness every day!"
Outside their duel activity, I remains adamantly bisexual. She confides that her
best friend has seen him often in the shower or in bed on Sunday brunches together. "I
would like to share him in a three-some to show my lover what he feels like and have her
take him as well. F refuses to even broach the topic, as this is a v-e-r-y touchy topic."
I states that F is "unusually sensitive for a man, especially on the underside and
the area around the pee hole." Anal sex though, is out of the question since the curvature
is too sharp to allow successful penetration. There have been many attempts and they
plan to continue trying, hoping it can be achieved. In the meantime, they have both tried
strap-on dildos to experiment. They expect the sensations to be worth their efforts. For
vaginal intercourse, the curvature makes the missionary position difficult to start. Wife is
usually on top; guiding F in with her hands and then riding him once inside, at that point,
maneuvering can then acquire the missionary position. Side by side position is not
possible, but spooning or wife on bottom, lying on tummy is "sheer bliss!" As I
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describes," the acute curvature presses very hard and incessantly on my G-spot, giving
me absolutely the most intense ever, perfect and magnificent orgasms possible. I have
never had orgasms like that with a man before getting married or ever since."
F stated, "Oral sex turned out to be a gorgeous surprise the first time, and better
ever since!" He relates that this first time occurred a few days before they were married,
and he accepted oral sex for the first time. He reasons that having oral sex did not
constitute loss of purity before the wedding night, and he could keep his pledge to wait
until marriage.
I went on to describe, "F was still so pee-shy that the room was totally dark when
I first took him in my mouth. The surprise was that the ejaculate did not splash where I
expected, in my throat, but rather, splashed on my chin and breast. Thinking something
went wrong, I turned on the light and found a penis like none of the many I had ever seen
before. Now oral sex is the most enjoyable and I take him as much as I want and have
the ejaculate bathe my breast or fall freely. Alternately, I can masturbate him vigorously,
placing my mouth upon his pee hole to catch all the ejaculate without ceasing my hand
activity. I simply think it is a better penis design!" And in addition, F still uses
masturbation frequently when I is on her period, or before going to sleep, and I just
encourage him with loving words, until it all flows down into his shorts."
Hypospadias
S.K. May
G's STORY: POST-TRAUMATIC LOCKER-ROOM SYNDROME
This is my personal Account of Growing up and living with Hypospadias. Except
for a 3-year stint in the Air Force at Myrtle Beach, SC, I have lived most of my life in
rodeo country. I am a 43-year old male who was born with Penoscrotal Hypospadias and
an undescended testicle (crytorchidism) at birth.
My first corrective hypospadias repair was done when I was 8-years-old, by a
plastic surgeon, which by my way of understanding, are no longer performed by plastic
surgeons, but by "Reconstructive Urologist." This first surgery was to close the original
opening at the base of my penis and to create a new urethra that would extend to the tip
of my penis. But in my case, the newly created urethra would still only extend to the
bottom of my glans.
During that surgery, they also removed the undescended testicle. I do remember
the pain being excruciating after this surgery. I don't remember having any particular
complications though. The second surgery took place when I was 12-years-old; a testicle
implant was placed in my scrotum. It was an adult size testicle, but it was needed to help
give that balance for when I would become an adult male. So needless to say, in middle
school and high school, I had a very large right testicle. As I have gotten older, my
scrotum has somewhat balanced out, except for the implant now rides higher. During my
adolescent years, I remember feeling and experiencing loneliness, isolation and shame in
the boys' locker room in gym class.
My third surgery was my most recent surgery for Penile Urethral Reconstruction
to correct a bulbous urethral stricture at 42. I had just experienced my first complication
sometimes associated with corrective surgery. I had a urethral stricture, which was caused
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S.K. May
by ingrown pubic hairs in the base of my penis. This is caused by using hair prone skin
grafts to construct the neourethra from the base to the glans.
This surgery was a very complex one. In order to correct the stricture, I was
referred to a Urology Specialist. He had consulted with me about two techniques
considered for transferring tissue for my Penile Urethral Reconstruction. His first
alternative was to use Buccal Mucosal grafts from my inner cheeks. His second choice
was to use local penile skin, but in the event that this tissue was insufficient, he would
have reverted back to use Buccal Mucosal grafts. The Urologist had agreed that there was
sufficient local penile skin present, and that he could use this tissue to perform the
urethral reconstruction. At first, I was very hesitant for him to use the Buccal Mucosal
graft, just thinking that I would constantly be feeling the scar in my inner cheek.
When the Urologist was performing the pre-evaluation to see if he had sufficient
local penile skin, he kept stretching on the penile skin and determined that there was
sufficient skin to work with. I had asked the Doctor if he was taking into consideration
that, at the time, my penis was flaccid. I would need that extra skin later for my erection.
He said that would not have any affect on my erection because the skin would stretch and
that I would still have my same size of erection I had before the surgery.
Well, I wish I could tell you that he was right. My penis is now 2 inches less in
length, however just recently, I could say that the skin is beginning to loosen up. The
penile skin has been very tight since the operation, which was performed March of 2003.
In retrospect, I can honestly say, he should have reverted back to the first alternative
choice, the Buccal Mucosal graft for the tissue transfer.
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S.K. May
In addition, one of the incisions opened from the surgery on the lower right side
of my penis due to an erection. The doctor had assured me that the incision will heal on
it's own and sutures were not needed to close the open incision. That seems partly
correct, the incision is closing and healing on it's own, but in order to completely correct
the incision that opened up, I will need to have surgery later on. I am just not looking
forward to being catheterized again.
A catheter was inserted in my penis for urinary drainage for some period of time
after this last surgery. The doctor had told me that the catheter would only be in for one
to two weeks, but since I had an incision to open up after the surgery, it caused the
catheter to remain for three weeks. The bladder spasms were so painful; they were
difficult to deal with. Prior to this surgery, I had no scars from the previous surgeries,
probably because of the surgery having been done at a much younger age, allowing time
for the scars to heal and disappear. Following the 2003 surgery, I still have some scar
tissue and you can see and feel where the incision had opened up.
Now I feel that my penis is misshapen on the underside and on the hideous side to
me. I now have to sit down to urinate, which I didn't have to do before the surgery. The
only improvement from this surgery is that the stricture was removed and the girth of my
penis was increased.
My parents never explained my condition (defect) or actually why I needed the
surgery other than "the Doctor said that I needed to have the surgery." What I remember
as a child was, I didn't understand why I had to go to the hospital to have surgery when I
was not sick. As a child, I was always told that hospitals were for sick or dying people.
But yet, I was being taken to the hospital. I remember trying to convince my parents that
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I felt fine and that I was not sick. Of course, that would make me wonder what was so
wrong with me that I had to go to the hospital. Yet, my parents did not try to give me any
comfort by explaining why it was that I needed surgery other than "the Doctor says you
have too."
I truly believe that my parents would have been better prepared to explain to their
son, why it was necessary to have surgery, if they had been more educated about their
newborn son's defect (Hypospadias). I have never held any resentment to my parents,
probably because I didn't even know what my condition was called until I was a grown
man of 42. By this time, my parents had both passed away. It was not till I consulted an
Urologist for my stricture, did I find out what my condition was called. All this time, I
just knew that my penis was different, but never actually knew why.
My hypospadias has not had any effect on any of my relationships; never did my
wife or partner ever know that I had hypospadias. They never questioned me either.
Besides, I never could have told them about my hypospadias when I didn't even know
that I had a condition.
As for my sexual orientation I have accepted that I am gay. I have now been
divorced for 10 years after being married for 11 years. I have a beautiful and wonderful
20-year-old daughter. I have had gay relationships with four partners, but I am single at
the present time.
This year in April, I attended the Hypospadias Epispadias Association (HEA)
seminar in Denver. This was an experience that I wish I had experienced a long time
ago, but like the saying goes, "better late than never." I was glad to get the opportunity to
hear the other members stories, and to see their tears. It allowed me to realize that I was
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not alone in experiencing the feelings of loneliness, isolation, and shame in the boys'
locker room, that I too had felt growing up. I could never thank all the individuals
enough that attended the seminar for sharing their stories and tears.
Thanks to "O," (refer to the "Story of O and P") one of the mothers of a newborn
son with hypospadias for making the acknowledgment of what she saw in us, something
that we seemed to have forgotten. She saw that we are not only strong individuals, but
also "survivors." I just hope that from here on, we don't forget that. Thank you, "O."
I also have to say a special thanks to two couples M. and J., and E. and M., for
making me feel, for the very first time, a feeling that I had never experienced before. I
felt that I had cheated myself from ever knowing what it would have been like to have
told my ex-wife or ex-partners, that I had hypospadias. To see how supportive each one
was to the other - that was an awesome experience to see. From here on, I will never
cheat myself of that opportunity again.
Everyone that attended that conference was a remarkable individual. I will
always remember them and they will always hold a special place in my heart. One thing
holds true; we will always have that special bond that brought us together. After
attending this seminar, I have accepted my hypospadias in a different perspective for
myself:
"Instead of always asking myself, why me? Why not ask, 'Why not me?' Maybe I
could make it my mission to try to convince Pediatricians to have pamphlets in
their offices in order to educate and inform parents who have newborn sons with
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hypospadias. I would like to prevent other parents from feeling uneducated about
their newborn son's defect, like I am sure that our parents did about their sons."
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H's LEGAL SEX-CHANGE STORY:
I am 51 and grew up for the first eleven years in Indonesia. I now live in the
Netherlands. At birth, the medical staff thought that I was a female, but years later my
aunt discovered that I had a small penis. So my parents changed my sex legally to male.
I have a micro penis, one descended testicle and the other is still up in the groin.
Because my aunt discovered my small penis, I suspected that she knows somebody else
in the family with hypospadias or micropenis, but she refuses to say whom.
I have had three operations, the first two were a failure. The last operation, the
surgeon took a skin graft from my upper left thigh and closed the pee-hole at the bottom
of my penis. I have had one surgery in Indonesia and recalled that I woke up during the
surgery and was put to sleep again with a gas mask. That surgery was not successful.
The second surgery in the Netherlands was also not successful because the skin graft
turned black and caused a great deal of pain. The third surgery was successful and the
procedure was called the Van der Meulen procedure. After reading the messages at the
Hypospadias forum group, I realized that I have no urine tube running through my small
penis.
My parents did not say anything about my hypospadias but I don't think they
know anything. My parents are divorced; I see my mother more often than I see my
father.
Maybe, but I am not sure, that my HS is the source that I have to switch jobs.
Recently, I have to quit a job that I have had for 8.5 years. Because my sex education, I
know that I am different. It was three years ago that I discovered that I have HS by
reading the ISNA web site. Now I have to be satisfied with my HS.
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S.K. May
I have paid for sex and still do. Now, a girl who is homeless is sleeping in my
house. The other girl who is also homeless has disappeared. When having paid sex, I
have oral, vaginal and anal.
Sorry to say, but I have nothing to do with the HEA. I read and send messages
only to their Yahoo groups. The HEA is very important for HS people to let them
know that HS is not uncommon and for help, educating HS people. For me, HEA is an
eye-opener.
(Author's note: H is very dedicated about sending research articles to anyone who has a
particular question about something on the groups. H, you are appreciated!)
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K's STORY: "MAYBE HE SHOULD BE A PRIEST?"
I was born with moderate hypospadias. The original opening was at or slightly below
the middle of my penis. I was seen at about 6 months of age for evaluation of the right
time to perform the corrective surgery. I always disliked the examination of my genitals.
I can remember going to the doctor when I was about four or five. I have a cousin who
also has hypospadias.
I knew I was different from other males, as I could not stand up and pee like my
Dad or brother. When I tried, the urine would always splash around the toilet and down
on to the floor. My mother was the one who took me to the doctor and the only one who
talked to me about hypospadias, although she really didn't talk about it that much. The
doctor never gave me any information. I do remember Mom and Dad having
disagreements over the surgery; basically Dad was opposed to it.
School was very difficult for me. I had to sit to pee in the boy's john, and of
course, that scored me some teasing. I became very shy about locker rooms, gyms,
urinals, and any public nudity. I appreciate mom for following through on the surgery
and realize how she had to argue against my father. I overheard him saying to her,
"That's the way God made him, that is the way he should stay, maybe he should be a
priest." So, mom did her best. Still, we had a good relationship before they passed.
My overall sex education was good, but poor regarding my hypospadias. I
sexually matured at 12 and began to experiment, however, I did not lose my virginity
until I was 22, and that was a struggle. I tried many times while in the Navy, but my
shyness interfered. My triumphs are that I eventually had sex with 4 different women. I
have tried all sexual routes, but anal, though I (tried it with the first wife, never with
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second), is not my route of choice. We vary our positions, but prefer the missionary
position.
The urologist I had been seeing for years died suddenly, so Mom took me to a
plastic surgeon, who then decided to do the first surgery when I was 14 years old. In
addition to the hypospadias, my nipples began to develop slightly and the surgeon
removed the tissue (gynecomastia) and did the first stage hypospadias repair. He
removed the chordee (bowstringing and downward curvature of the penis, most
noticeable during erection). This is called an orthoplasty (straightening).
This surgery was very painful emotionally and physically, compounded by the
lack of any explanations from the surgeon. He left two large semi-circular scars on my
chest as "divots" (sunken areas on the chest). Later, I found out that this breast surgery
was not necessary and should have been left alone. In all likelihood, the gynecomastia
would have resolved by itself. That surgery occurred in the summer before high school.
When I got back in school, I would not take off my shirt or shower in front of others.
That following Christmas, I had the 2nd stage urethroplasty to construct a pee tube.
The plastic surgeon made a free graft from skin harvested from the inner aspect of
my upper arm. This was very painful to my arm and to penis. I was unable to explain
what the surgery was to my young hospital roommate. Withdrawing and avoiding
disclosure had become a pattern, especially about my hypospadias or surgery. Now I had
three pee-holes, the one I was born with, one at the tip of my penis, and the third, a short
distance from the original urethra.
I can remember not wanting to go home because I simply did not want to face the
real world of school again. The last stage was done the following summer, when the
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doctor joined the graft to the urethra (pee tube and opening); I was then able to pee
standing up. Still, it was very painful, especially the first few times I urinated after the
catheter was removed. All these surgeries were traumatic and made much worse by
having them done as a teen. I feel that hypospadias surgery should be done at a young
age (preschool) and by a pediatric urologist, not by plastic surgeons.
After a year or so, the neoplasty (constructed urine tube made from skin), began
to stricture (narrow) and a urethral diverticulum (ballooning) resulted. However, I was
reluctant to inform my parents or the doctor about this problem. I would get bad urinary
tract infections (UTI's). On top of all that, I came down with a case of the mumps and my
testicles swelled up.
After high school graduation, I joined the armed forces and became a Medic.
Again, I did not disclose my hypospadias. But after a couple of years, my UTI's got
worse and I developed epididymitis (inflammation of the sperm-incubator tubes) in the
testicles and was passing blood in my urine (hematuria). I had urinary frequency
(polyuria) and painful urination (dysuria). The military urologist did a thorough
examination, including an IVP (intravenous pyelogram, dye-contrast x-ray) in order to
evaluate the kidneys. In addition, a cystoscopy (lighted instrument views the bladder and
urethra). I was very embarrassed about having the cystoscopy, which was done with a
local anesthetic while I was fully conscious. The urologist assured me that he would not
make any trouble for me with military authorities. He did advise me though, that the
strictured free graft and diverticulum would need to be removed. This of course, would
mean I would have hypospadias again. I might have been able to get out of military
service because of the HS, but glad I didn't, it really helped my confidence. I ended up
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doing active duty for 4 years, 18 years in US Coast Guard and Army Reserves and then
Captain in NY Guard Medical Service Corps.
After active duty, I went to college and met the girl who would become my first
wife. I continued to experience UTI's and one or two bouts of epididymitis over the next
few years, and following graduation from college. Because of the stricturing and
diverticulum getting worse, the urologist who was treating me, recommended surgery to
remove the reconstructed urethra, and of course, this meant that the urinary opening
would be located even further down the shaft of my penis. That surgery and
hospitalization were especially traumatic for me. Old emotional wounds were opened up
and once again, I was back sitting on a toilet.
This was stressful for my wife. Yet, a positive effect of the surgery was that my
penis was straighter as the free graft had also caused some penile downward curvature,
and sexual intercourse was improved. She was upset that I did not trust her enough to
inform her of hypospadias prior to marriage. She still did not want me to attempt
additional surgery, especially another reconstruction. Her thinking was that it would be
complicated and that, sitting to urinate wasn't so bad, half the people in the world did it
(women). This, and my not telling her about the hypospadias, compounded by the fact
that I was sterile (confirmed by sperm count test) lead to increased difficulties for us as
the years went on. Interestingly, we later found out that she was unable to have children
too because of her own ovary and uterus problems.
Our sex life, however, was good. I was relieved, in a sense, of not being able to
have children. The possibility of producing a child with hypospadias or reproductive
problems was risky. It took me eight years to get enough determination to undergo
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corrective surgery again. I knew there were risks, but I decided to go for it. I did not get
much support from my spouse, but needless to say I was tired of the way my penis looked
and having to squat to pee.
As an adult, surgery was extremely difficult, including time off from work and
offering explanations for what surgery was being done. I just said that I had urinary
problems (blockage). I really disliked that part. The surgery was done in a one-stage
repair, utilizing penile skin for the Urethroplasty. Again, this surgery was painful
emotionally and physically. Unfortunately, a fistula developed and several more
surgeries were necessary for a successful fistual repair. This brought my total number of
surgeries to eight.
On three occasions, I had to have a suprapubic catheter. This is placed directly
into the bladder through the abdomen. It was in place for several weeks in an attempt to
give fistula repairs a chance to heal. Finally, in 1982, the fistual repair was successful
with a flip-flop reconstruction as well as a flip-flop construction for advancement of the
distal meatus (pee-hole) to the tip of my penis. This was needed because my urine stream
splashed unpredictable. I had a suprapubic catheter for about a week. Finally, the result
was good this time. The urine stream was and continues to be strong and straight.
I was divorced from my first wife related to many issues: distrust of each other,
multiple surgeries for hypospadias and the inability to have children. These stressed both
of us.
After the divorce, I was sure that I would not be able to have another relationship and
became very depressed. However, I vowed to work on myself and learn from MY
mistakes. Then a mutually satisfying sexual relationship with a younger woman boosted
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my confidence. I made sure that I informed her of the hypospadias, which did not bother
her at all. Unrelated problems came between us and we stopped and we stopped seeing
each other. Shortly after that, I met and married my present wife. We are happily
married.
Another fistual occurred a year and a half ago and was treated successfully, this
time with microsurgery. Any surgery, but especially urinary surgery is so stressful for
me that I have many features now of PTSD (PostTraumatic Stress Disorder). My wife has
been very supportive. I had been in therapy for five years to better deal with my
hypospadias, impaired body image, self-acceptance, and PTSD. I might add, in between
all those catheters, fistulas and surgeries, I managed to earn two college degrees.
My thoughts in closing this personal story of living with hypospadias is, that it is
a good idea to obtain counseling for men and boys that have hypospadias, as well as
counseling for their parents or partners. Try to inform partners about the hypospadias
early in a relationship. Modern surgical techniques, utilizing microsurgery usually
provide good results. Make sure that the surgeon is an urologist who specializes in
hypospadias reconstruction. Let me stress this point especially, for adults who have had
problems, such as fistula formation or strictures, it is best to seek a urologist who
specializes in complications associated with older and unsuccessful hypospadias repairs.
These surgeons are often associated with a teaching hospital.
I recently had knee surgery. One thing hypospadias has taught me is patience
with recovery and how to perform self-care. Bicycling has been a source of feeling free,
starting from childhood time. I recall bicycling to the urologist as a teen before having
the first surgeries. Funny how lots of memories are linked to things like that. I have
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come a long way in accepting hypospadias. Much of my acceptance is due to the
Hypospadias Association of America. My thanks to Bob, Michael, and the other fine
members of our Association. I just wish the Association had been in existence sooner.
THE WIFE'S STORY
K told me about his having hypospadias very soon after we began dating, and
before we had sex. He has told me "everything" of his entire history." I understand that
his parents did not explain much about the hypospadias, but his Mom was supportive
about getting him to an urologist.
He gets very anxious and upset anytime he has to go to a hospital or meet a new
doctor, especially if it has to do with urology. I approach him during these times with
calmness and warmth in words and actions (caresses). I have also supported his decision
in past years in getting help from a psychologist. We have gone to the therapist
separately and together.
I have helped him (emotionally & physically) when he had fistula surgery in
1999. Not only has the counseling helped, but also the HEA has helped. We have met
two people from HEA in person, (actually three: one couple and a single male).
Our sex is good. We engage in various sexual positions: missionary seems to
work the best, I like manual and oral stimulation to my clitoris. Best intercourse is with
him on top. I also like cunnilingus and don't mind performing fellatio on him. (I was
previously married). We also engage in mutual manual stimulation. K's scar line don't
seem to be a problem, I think his penis looks okay and works good!
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S.K. May
MY LIFE WITH HYPOSPADIAS
By "N"
Background
Hi. I will be 19 in December. For my whole life, I have lived in the same place.
At birth, it was discovered that my urethral opening was not at the tip of the penis, but
rather at the lower edge of the glans. I do not know many details other than that. No one
on my mom’s or dad’s side has had hypospadias. I was the first in either family to get it.
Surgeries, Physical Appearance
My first surgery was at the age of two. The purpose was to correct my
hypospadias at an early age; my parent’s were told by the doctor that it was the right
thing to do. The surgery seemed to go OK, but the next day I began to bleed profusely
from my penis. My mom drove me back to the same doctor. He said that he had sewn to
close to a blood vessel the first time around. My foreskin was used to patch the area on
the underside of my penis. This is all I know about my two surgeries. Now my penis is
wider at the tip and narrower at the base. The skin on the underside is a different color
than on top. My urethral opening is quite large and soap gets in there and hurts bad if I’m
not careful in the shower. When erect, it is 5 inches long.
Psychological
I don’t remember my two surgeries since I was only two years old. I always
thought that my penis was normal since I had not seen any other penises, so I did not
worry about it as a young child. I first began to notice something different once my
brother started making comments like, “N's got a jacked up dick!” At first I didn’t know
what he was talking about until I saw his penis while he was taking a bath. Now I knew
what normal was. Before this my parent’s hadn’t said anything about it to me. I don’t
remember them explaining to me what hypospadias really was in detail. They just said
things like, “Well, you have what’s called hypospadias, it means your penis might look a
little different.” They only offered me vague explanations of what it actually was. This is
what my parents regret now. They wish they had told me more about what I had and not
tried to cover it up so much. I can understand where they were coming from though.
Currently I have a very good relationship with my parents. I’m helping my dad
put in a hardwood floor and my mom watches TV with me almost every night in my
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S.K. May
room. As for relationships with others, I barely only have one good friend; the others are
just acquaintances. I can never start a conversation with anyone whom I don’t already
know. I can’t stand being in places with lots of people like a mall, or school. I don’t like
that because I know all these people probably have normal genitals and I’m just
completely alone with my problem. It drives me crazy when I start thinking like that, so I
try not to, but it still happens every now and then. When it comes to talking to girls I
don’t even bother and I try to avoid them. If one starts talking to me I will try to get
away from her. I know this is dumb, but I don’t talk to girls because I think I’m not
“compatible” with them, not mentally, but physically, due to my hypospadias.
I can remember some good, bad, and ugly experiences with hypospadias. A good
one was that my best friend, who had seen my penis, said that the girls would like it
because it was wider than normal at the tip. The thought of that didn’t rouse me much
though. A bad experience is urination. I’ve been forced to sit and urinate which, to most
teenagers, means I’ve become a girl. I don’t care much about that though, since I only
use the bathroom at home, rarely at school. An ugly experience: any time I decide to
examine my penis. I’m reminded of how ugly and disgusting it is every time I do that.
Sexuality
My early sex education was in fourth grade, or fifth. It was pretty adequate; I
knew what sex was and how babies were formed, and why people had sex. The age at
which I first noticed changes was probably 13. At that time I started growing hair here,
there, and everywhere. My first ejaculation was probably around 15. I am straight and
am single.
My sexual history began while experimenting with my best friend. He was the
one who showed me what masturbation was and we tried it on each other. We also tried
oral sex but that got old quickly, it was too awkward. I’ve been with two girls in the past
two years. With both of them, things got intimate, but I never let it reach a point where
they would see my penis. That was something I avoided at all costs. I couldn’t let them
see it, I just couldn’t do it, and my penis would be too different from anything they would
expect. So I am still a virgin, and I want to stay that way until I can get things straight up
in my head about showing others my penis. As for how hypospadias affects sex, I
wouldn’t know. I do know that there is less feeling on the underside than the topside.
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S.K. May
This is where they used my foreskin to do patchwork. Well, that’s all I have for now and
it was fun writing it. Please ask questions about anything, if you have them, I want this
project to be very rewarding for everyone. I am glad I can be of help on letting doctors
know what kind of help, people like me have been needing for a long time.
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S.K. May
FOUR ADULTS VS. ONE TODDLER FOR A BANDAGE CHANGE:
A STORY BY L ABOUT LITTLE M
Ten days post-op, M and I are doing well, just a little exhausted from the
experience. The surgery was about 3.5 hours long and fortunately, he recouped in
recovery better than last time (which was 2 hours to wake up!). Surgery was at 0900
hours and we were in Peds by 1445. They had him hooked up to Morphine infusion so
that he had no pain, which was good. Although, I am not sure of the exact procedure, I do
know that they formed a tube from the skin on the underside of the penis, opened the
penile shaft from glans to scrotum and laid this new tube in, and created a meatus. And
this time, I didn't hear any of the surgery staff yelling to each other "where is the
complications book?" That is rather unnerving in itself. Good thing I am in health care
myself and know how absent-minded people can be sometimes.
Surprisingly, they did not insert a catheter or stent of any sort! He had a
suprapubic diversion into his bladder that exited just below his navel. Morphine was
stopped on day 3, although by that time, his infusion had been decreased to .5 mg per hr.
but I am sure he didn't need it. When they took him off, he had nothing for pain, not even
Tylenol! But he was quite comfortable.
The first time they removed the dressing, I had requested a pre-med for the
occasion. Guess their idea and mine differed on this point. They came in with Gravol and
Tylenol, which I promptly told them would suffice. They assured me it would. After an
hour, he was still awake, trying his latest "escape-from-the-crib" plan. They final agreed
to something a little stronger, and gave him Nebutol. He fell asleep in about 20 minutes,
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S.K. May
though a light sleep. When they started to remove the bandages, he just screamed. He
kicked and flailed so hard it took 4 of us to hold him while the doctor removed the
dressing. He couldn't open his eyes, but he sure could kick. He may be just 2 but he is 35
lbs and 3 ft tall and very strong. All of us were sweating by the time they finished. Even
the doctor agreed that he would never have gotten the bandage off without the sedation.
Why they doubt us parents, I'll never know.
On day 7 post-op, they clamped the suprapubic catherter and allowed the urine to
flow through the neourethra. Wow! Did he let out a yelp the first time he voided. He
quickly associated the pain with voiding and started holding the urine. As a result, his
void quantity started to be less than the residual, which they drained from the catherter
after every void. They finally leveled out to about even and the doctor agreed that we
should just let him go home and get used to the experience and eventually the pain would
subside. I have been putting him in a warm bath to help him fully empty his bladder. It
seems to hurt a bit less in the tub.
Before we left the hospital, they of course removed the suprapubic catheter, which
was another event. It, of course, didn't come out easily and I swear - she pulled on it as
though she was starting an outboard motor! (Twice!) The end of the tube had a half-inch
balloon, which ripped open the site to about an inch. She didn't want to suture it but put
steri-strips at my insistence. She assured me it would close on it's own in a few days.
Funny how things work, if I had left a gap that big on my kid's stomach, instead of taking
him to an emergency room, Social Services would have had me in jail.
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All in all, he has been a trooper. He played with the same nurses who caused him
pain by changing bandages and IV's. He is still screaming when he pees and runs
throughout the house until he is finished, but he quickly goes back to playing.
He protests every diaper change and has yet to let me change the bandage
covering the suprapubic site. He doesn't know it, but that's coming in a little while. There
isn't much drainage, so I am not too concerned. Anyway, hope I haven't bored you too
much with this. Take care and thanks so much for your concern. I've attached a photo of
us in his hospital crib. As you can see, he was doing far better than I was. Ten days of
sleeping in a vinyl chair made me look like that. Now, I have to go think of some clever
plan to change that bandage.
20 days Post-op:
Things seem to be progressing well, although M still has some pain when he
voids. Not all the time however, and it is difficult to pin point when it will be painful.
I would rather not medicate him all day, just for a single instance of discomfort, so I
am basically trying to get him to understand that the pain will be brief and encourage
him to work through it. Sounds a bit mean I guess, but I think he is managing it okay.
We had the first check up last Friday and the surgeon was pleased with things.
M was born August of 2001. The pregnancy was a bit of a surprise as I have 2
older children 16.5 and 18 years, and basically, thought I was done. Here in Canada,
anyone over the age of 35 years is classified as a high-risk pregnancy, so at 42,
automatically they start telling you "what the odds are....." My doctor's first comment
after telling me that I was pregnant, was "don't worry, we can take care of things",
meaning of course, abortion. That was not an option for me, although I worried how I
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S.K. May
would manage a child at my age. Since I was 42, they almost force you into genetic
counseling, "triple-marker tests" and Amniocentesis. My triple-marker test came back
positive for both Down's Syndrome and spina bifida. However, if you are familiar with
the scores for those tests, one condition requires a high value on a certain element and the
other condition requires a low number on the same element, so I totally challenged the
results. I ended up having a series of in-depth ultra sounds to rule out the spina bifida. I
had the amniocentesis done, but wished I hadn't. The stress of the entire procedure nearly
destroyed me. Unfortunately, working in a government facility for developmentally
disabled adults for 23 years, and with such a variety of genetic anomalies, I really felt I
needed to be prepared.
Birth was uneventful, other than a planned C-section since my other two were
sections as well. When he was born, the pediatrician told us while I was still in OR, what
they had found with the hypospadias. I hadn't really heard of it, so I just said, "Okay, let
me know what to do and when I have to."
When I got back to my room, a rather rude Urologist came in, rudely asked my
support people to leave and rudely proceeded to tell me that his condition was "severe
hypospadias with chordee." The urethral opening was at the base of his penis and needed
to be repaired surgically. Me, being the person that I am, started asking a few questions,
at which point he handed me his card and asked me to call his office to make an
appointment in a few days. I pitched the card in the trash immediately! Nurses came in
shortly and asked me to sign for an ultrasound to further investigate his plumbing. They
didn't specify what they were looking at or for, but I knew they were looking to confirm
gender. I wasn't too concerned, as I had had the amniocentesis done and knew I had a
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boy. I think the reality of the situation never really surfaced, until I was back home and
started searching the net for information, coming across the various sites dedicated to this
condition.
My first guilt thoughts were about my age. Maybe my eggs were just too old!
Because I don't drink, smoke or do drugs, it had to be my age. Then I wondered about the
Amniocentesis. Since it is done right about the time of the developing urethra, could they
have disturbed something. Who knows what kind of imbalance they set up when they go
probing? Again, I blamed myself because I was the one who consented.
Then I questioned the 2-hour ultrasounds, could that have done anything? After
researching, a bit of the guilt waned and was soon replaced with the fear of how this
would affect my son. Whereas, I once thought that he would have this surgery as an
infant and he would never know the difference, I now discovered that this condition
would affect him forever.
One of the first sites I found was a site where young men talked about having HS.
What really struck me, was that many, or even most of these men talking were gay. So I
started believing that HS somehow affected the testosterone levels or the other way
around, and that the results would be, that my son would be gay. Believe it or not, I
started preparing in my head, how I would answer when he eventually told me this, and
what I could say to be the most supportive.
I even posed this question on that hypospadias board. All the time, I still had not
discovered the mom's site where I met you, so I was not aware of the extent of the
surgical procedures. I researched and found the best surgeon in Ontario was in the
Children's hospital, then I requested a referral from my family doctor. When I finally got
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S.K. May
to see the surgeon there, M was well over a year old and I had read so much information,
I think that I came off as "one obnoxious mother." The surgeon was evidently offended
by all of my questions, which made me uncomfortable too, but I knew he was the best
available to me. So I just accepted his condescending comments and tried to be grateful.
This specialist has done this particular surgery 3-5 times a week for many, many years.
As I mentioned in a previous email, I had never read of this particular procedure and all I
can do is trust that he knows what he is doing. Still, when I booked myself into the
Ronald McDonald House for a week, I knew that I would see it through.
As for the future, I just pray that the trauma of the events haven't done anything to
scar him. On Friday, he was so happy to see the doctor that M gave him a big hug. He
skipped all the way through the hospital. So I am sure that he has no anxieties about the
surgery. Yet at diaper changes, he is still very protective and will only let me touch him
briefly. He seems to notice if I am looking too long at his penis and starts to escape.
Everything appears normal, which was a concern of course, although the penis is rather
small. He has yet to be erect since the surgery and I wonder about that too. The meatus is
placed correctly but there is a bit of scarring around it at present. I don't know if it will go
away, but it is not that significant. I worry like the other parents about fistulas and
constriction, but again, I pray that this was his last surgery.
I still worry about the gay thing, although I am smart enough to know that all men
with HS are not gay. But then again, I wonder if he will find a girlfriend or wife that
won't care that his penis is small. Unfortunately, until he is potty trained and probably
well after that, I will still think about this situation with every diaper change, every bath,
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S.K. May
every trip to the pool. It is just there in your face, and I don't know whether or not the
guilt will stay forever.
On the Mom's site, there was a reference to a doctor who works out of Toronto
Sick Kids Hospital, who does counseling for boys with HS, maybe the parents too. I have
her number written down (somewhere), just in case. Although I have a wonderful
husband, he looks to me for peace and tranquillity, he doesn't worry about things like I
do. If I am calm, he is calm. I could never let him know my worries about M's future, and
have him worry for the next 17 or so years as well.
I hope this information is helpful to you. I didn't realize till now, how long this
account is, sorry. Let me know if there is anything else you need. I did journal this
process with
Digital pictures, if that is useful to you, let me know and I will send them. There are no
faces, so you may use them in your report if you wish. This exercise in itself was
therapeutic.
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S.K. May
"I CAN'T FIND THE HOLE HE PEES FROM"
BY O
My son, P, was born March 1, 2002, healthy and sweet. We had had a stressful
pregnancy after finding out that he had a twin that died sometime before the 18th week.
After that, we just prayed for a full term, healthy baby. Luckily, he was even born on his
due date.
No one noticed his hypospadias with minimal chordee in the hospital. Since he
wasn't going to be circumcised, I guess the doctors just didn't look that closely. It wasn't
until his one-week check-up that the pediatrician said she "couldn't find the hole he was
peeing from." She told me to keep an eye on it and then referred me to see the only
Pediatric Urologist in the state, saying that he had hypospadias, but that it was nothing
major, they would just make his meatus come out to the end of his penis.
We saw the Urologist when he was four months old and afterwards, I was
shocked to say the least, at what surgery entailed. I wasn't prepared, and the surgeon
wasn't very good at explaining things in laymen's terms. I had asked for a psychologist in
the area who dealt with these issues and the urologist said he hadn't heard of one and left
it at that. We left feeling very upset and confused about what our options were. I asked
my pediatrician for another referral and she sent me to a regular urologist. As much as I
liked him at the first visit, something about him and his inability to fully answer all my
questions made me feel not so right. We still scheduled surgery since we were told "it had
to be done" and didn't know where else to go.
We were planning a trip to Australia and decided to have one last opinion, so we
scheduled with a pediatric urologist that was highly recommended. We rescheduled his
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surgery until after we got back from our vacation. We have family there so I thought I
could come back in a year or so to have the surgery done if we felt comfortable with him.
We were very impressed with the doctor and could tell he was light years ahead of the
other two surgeons we had seen. If I had not met with him, I wouldn't have known there
was such a big difference in competency in surgeons and that this was such a delicate,
major surgery. He said we should do the surgery at the age he was at the time. In the end,
we couldn't go ahead with surgery because of some problems with timing and with airline
ticket changes, etc. I also wanted to be totally comfortable with the choice to do surgery
and wanted to attend the annual meeting of the Hypospadias and Epispadias Association.
I'm so glad I went to Denver. I gained so much information there. There were
such a variety of sources and experts on hypospadias and its treatments. It was an
emotional weekend for me, speaking with all the men who were dealing with the issues
of hypospadias. After the conference, my husband and I decided not to have the surgery
as my son should not have any functional problems. I was just glad I had as much
information as I had to make that decision. I was saddened that this condition is as
common as 1 in 125 boys and I was the only parent attending the conference. Surely
there were other parents in the country who wanted to find out more information for their
son's sake?
I know there is far too little information out there about the choices for parents
with hypospadic children and that parents usually don't question the surgeon since they
themselves know nothing about the condition. Many unqualified surgeons are messing up
surgeries and the child is the one who has to pay for it, mainly psychologically. I know in
the right hands, my son's surgery probably wouldn't have had any problems in my son's
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S.K. May
appearance but in the end, I felt since he wasn't broken, why should I make the decision
for him to have a cosmetic surgery done. I now know that raising my son with the
knowledge about his condition and making him know he is okay who he is, will have the
outcome everyone wants in the end, surgery or no, a confident and happy grown man. We
have started putting money away each month so that when he is at an age to make that
decision for himself, he won't have to come up with the money. Hopefully he will see
himself as fine and not wish to have the surgery.
I am now happy that I can enjoy my son without worrying about his hypospadias.
I just wish that the year of searching and searching for information about it could have
been spent enjoying him more instead of crying in front of the computer every night. It
should not be so hard to find accurate and well-rounded opinions and information on such
a commonality in boys.
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R's STORY: "MORE SURGERY? WHAT'S THE POINT?"
I am a 21-year old guy with hypospadias and I live in the north east of England.
When I was born, my hypospadias was quite severe, the urethral opening was right at the
base of my penis and I had chordee as well.
I've had several surgeries, 2 when I was little and the rest in my late teens.
My first surgery was performed at age 3 and required a 2-week stay in hospital. The aim
was to fully correct the hs but it failed, as I developed a fistula. A second surgery was
required 6 months later when I was 4 and corrected the problem fully.
Physically, I had no problems until I was 15, then I developed a severe stricture
(narrowing). It was so bad that I could not pass any urine. I had surgery to cut away the
narrow urethra and it left me with the urethral opening at the base of my penis again. The
narrowing continued deeper into my urethra and required further surgeries to dilate them.
So, today I am left with my opening at the base of my penis just like when I was
born. It kind of makes the whole surgery experience feel pointless. My penis is very
scarred from all of the surgeries and it looks a mess. I could have another correction
done, but I have no hope or faith in further surgery. I don't want to go through it all again.
More surgery wouldn't necessarily make my penis look better - so what's the point?
I remember a great deal of the time in hospital, even though I was only 3 or 4
years old. My parents didn't tell me about the surgery until the day I went into hospital. I
just went along with it the first time but the second time; I was wiser and sat outside the
hospital ward screaming. I did not want to be there again! I also remember the terror of
being put to sleep; the memory still scares me now.
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Looking back, my mum did the best she could. She stayed by my bedside every
night while I was in there. However, I don't remember my dad being so compassionate.
He was the one who chased me as I tried to escape the 2nd time round, and, he was the
one who forced me to pass urine after the surgery even though I was in a lot of pain. I
guess on some level, I have never gotten over him doing that. I have never forgiven him
for the way he treated me and even all this time later my relationship with him is not what
it could be.
Back in my teens, I felt worthless, and hopeless with this condition. I feared no
one would ever accept me with this. I still fear growing old alone. I was angry and
jealous of my friends. I felt like I was missing out on something really big. I felt like I
had been violated and had something stolen from me. I blamed everyone, especially my
dad because he is the one I remember forcing surgery on me. As a child, I was very quiet
and shy; in fact I am still that way today.
I entered puberty a little later than my friends did. I think I started growing hair
and muscles around 14 and ejaculated for the first time when I was 16. As for orientation,
I am gay. I first knew when I was about 10. I am still 'in the closet' to my family and
friends, although I think they probably know. I've never had a boyfriend. In addition, I
am still a virgin, and probably will be for sometime with this. I don't have the confidence
to show my penis to another person. Plus, I think that it is harder for a shy, gay guy like
me to meet others for the first time.
So instead, I masturbate a few times a week and look at porn sometimes. I
sometimes feel really jealous when looking at other guys. I wish I had what they did, but
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I am starting to realize there is more to life. As far as sensation goes, it's kinda mixed up.
Some parts of my penis are way too sensitive and other parts are numb.
For me, that's what it has been like to live with hypospadias, so far anyway.
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CONCLUSION
There is nothing noble about being
superior to some other men.
The true nobility is in being
superior to your previous self.
Hindustani proverb
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CONCLUSION
We have taken a long, complicated road to arrive at this destination of a better
understanding and empathetic enlightenment for males who are born with hypospadias. I
assume that my reader has also acquired insights into the challenges faced by their
families and love-partners as well. Indeed, the challenges of hypospadias are too many to
count.
First, we looked at the challenges of nature against the defenseless embryo,
balancing precariously, at the mercy of the proper mix and timing of hormones. Then,
the infant at birth presented as “different,” challenges the parent to treat him, or not to
treat him in a certain way. Add to the hardship of physical complications an environment
that is harsh and hostile to the different among us. For always, there will be callous boys
competing for the superior position by reducing others in ridicule, and those are the
ingredients for a life-long disturbance in body image and self-shame for the boy born
with hypospadias.
I recall a discussion that unfolded on the HEA group forum some time ago. The
topic was “anger” and many possible targets were discussed. One man in particular, put
it this way: “We can project our anger and blame endlessly, but in the end, in what way
have we gained from that activity? But the place our anger really belongs is toward men
who have had hypospadias before us. They have done nothing to reach out to others, to
us when we were young. But again, they knew little about their condition or that our
number existed. But we do not have that excuse; we are well informed. Therefore, it is
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S.K. May
up to us to turn our anger toward constructive problem-solving instead of whining and
moaning about our lot in life.”
Following this discussion, I soon observed that members began to organize their
efforts to better inform the public about hypospadias. They are designing phamplets to
place in pediatricians’ offices. They also interact in a seemingly “tireless” fashion to
“counsel” the many distraught parents or other males that are, for that moment,
“stumbling under the burdens of hypospadias.” Now it is imperative for the Sex
Therapist to be available and informed in order to pick up where mere support leaves off.
Another important point with which to conclude is the observation that medical
follow-up after surgery was often noted to be in a haphazard fashion. One of the story
contributors, “G,” made a direct point of sending me a request to include “the importance
of follow-up” in my report. He stated that the “common attitude among surgeons is that
there is the opportunity to catch problems that might develop, especially during the
adolescent growth spurt, when boys will understandably be hesitant to come to their
parents if they have problems. In addition to having the surgeon do regular follow-ups to
check for physical problems, there should also be some sort of psychological follow-up,
even for those whose condition was relatively minor.”
As the patient and/or his family are becoming more informed and proficient at
seeking medical and surgical results, it is reasonable to expect that other quality-of-life
improvements will be pursued. They are very likely to seek the guidance of the Sex
Therapist, perhaps as openly as couples flocked to the Masters and Johnson Institute
during the 70’s.
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It was interesting to observe in the personal accounts, the phenomenon of the
parents who provided sexual information, including the open discussion of the child’s
hypospadias, showing a correlation with the male’s own sense of self-acceptance and
adjustment. In addition, more social confidence could be noted and willingness to
explore and make progress in life’s issues. Their current relationships too, appeared to be
reflected in any resolutions in the past. Without a doubt, many of the early messages
heard by the respondents still appear retained in their image of self.
The challenges of hypospadias go way beyond the localized urethral
misplacement. The event of surgical correction does not settle the matter. The condition
still prescribes for the male, a lifetime of challenges, both physically and emotionally. If
physically and emotionally, then sexually was well.
I for one, feel that I have only begun to “look into this thing called hypospadias.”
There is still so much to learn and discover. From this study, I would like to further
develop a manual for counseling the hypospadic and his family. I had to stop myself short
of composing a parent’s checklist for obtaining a surgeon. It was intriguing to consider
the counseling needs of the adolescent with hypospadias. Of course, that too is beyond
the scope of this study. However, the reason that I disclosed those ideas, is to point out
that this is a topic rich with information, rich with people in need, and rich with
challenges.
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REFERENCES
A man is his penis.
A man and his penis are one.
William Granzig
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S.K. May
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APPENDIX
appendix 1
Hypospadias
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GLOSSARY OF TERMS RELEVANT TO HYPOSPADIAS
Body Presentation (Taber's. 1997):
Anterior. Front, or abdominal side of the body.
Posterior. Back.
Distal. Farthest from trunk or point of reference. Opposite:proximal.
Proximal. Nearest the point of attachment, center or reference. Opposite:distal.
Dorsal. Usually back or rear, but with the penis, it is the 'top,' as the male looks
down at his penis. As opposed to ventral.
Ventral. Pertains to lower or underneath, also to anterior or front side f the
body. If the penis were held upward against the abdomen, the ventral view of the
penis is seen.
Ablatio penis. Medical term for a micropenis, usually less than three inches in length
when fully erect, with or without a hypospadia.
Balinitis. General inflammation and infection of the penis.
Buccal mucosa. Tissue from the inner cheek used as transplant for neo-urethras. .
Catheter. A tube inserted into the urethra to drain urine from the bladder and into a
collection bag is routinely used following surgery for hypospadias. Also see
"drippy stent."
Circumcision. Trimming away of the foreskin that covers the head of the penis.
Coronal hypospadias. One of the milder forms of hypospadias in which the meatus opens
on the undersurface of the glans.
Chordee. A downward bending of the penis that is a common feature in cases of
hypospadias. This downward bending is more profound during erections.
Cystoscopy. Internal examination of the bladder and urethra, using a small tube with
fiberoptics inserted through the urethral meatus.
Corpus cavernosum. Two tubes of sponge-like tissue that surround the dorsal topside
surface of the penis that fills with blood to produce an erection.
Corpus spongiosum. A single sponge-like tube that surrounds the urethra as it passes the
length of the penis and participates in the erectile process by engorging with
blood. In hypospadias, this tube may be shortened because of the shorter length
of the urethra.
Cytoscope. An instrument for viewing the interior of the bladder.
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Dilation or Dilatation. A treatment to rectify strictures and stenosis by purposely
stretching the urethra in order to improve urine flow.
Diverticulum. A possible complication of penile surgery in which there is ballooning
Of the urethra due to the fluids of urination or ejaculation being caught in a
pocket or pouch off a main cavity or tube.
Dorsal surface. The backside of the body, or in the context of hypospadias and
epispadias, the topside of the penis. In cases of epispadias, the top of the penis is
where the urethral meatus is located.
Drippy stent. A method used in hypospadias repair in which an open urinary catheter
drains into an infant's diaper rather than into a collection bag. This clever
technique uses double, disposable diapers. The diaper placed on the baby first
can stay relatively dry since the catheter drains into a larger diaper that is over the first
one.
Edema. Abnormally large amounts of fluid in any intercellular tissue spaces resulting
from trauma or inflammation.
Ejaculation. The expulsion of semen from the penis that occurs when muscles at the base
of the penis contract during orgasm and propels fluid that is produced in the
seminal vesicles, out through the urethral meatus.
Epispadias. A urinary tube anatomic variation, less common but more severe than
hypospadias. In these cases, the urethral meatus is somewhere on the top or
dorsal surface of the penis, often with additional anomalies like exstrophy of the
bladder. A series of complex surgeries over many years are usually required.
Erection. A firm penis is formed as a response to sexual arousal when arterial-in blood
becomes trapped by out-going veins that become very narrowed during the sexual
excitement.
Exstrophy. Associated deformity with epispadias in which the bladder is partly or
completely located outside the abdominal wall.
Fistula. An open hole results when there is a break down of the surgical scar along a
repaired urethra due to pressure during urination. Urine is forced into the body of
the penis and depending on the degree, dribbling and or spraying from the fistual
hole occurs. A fistual can heal on its own but more often surgery is required to
close the hole and stop the leakage.
Frenulum. Often absent in hypospadias, the thin web of skin that joins the inside of the
foreskin to the underside of the glans is similar to the web of skin that joins the
tongue to the bottom of the mouth.
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Foreskin. The flap of skin that covers the head or glans of the penis is also called the
prepuce. In the majority of hypospadias cases, the foreskin does not completely
envelop or cover the glans on the undersurface of the penis, and only the upper
foreskin is present as a "hood." Often called "dorsal hooded foreskin."
Glans. The bulbous end of the penis.
Hypospadias. An anatomic variation of the urinary and semen-passage tube that results
in the opening of the urethra meatus being located on the underside (ventral
surface) of the penis rather than its normal position on the middle tip of the glans.
Less often, the meatus opens on the perineum or even as a large open slit, running
to the point where the urethral meatus should be. In other cases, there may be two
separate openings, one that is functional and one that is non-functional but in the
correct location.
Intersex. Genital organs which are neither obviously male nor obviously female.
Hypospadias alone is not considered as an intersex condition, although it may
cause investigation if other factors are present. Hermaphrodite is a related
but this condition is rare and involves gonads of both sexes.
IVP(Intravenous Pyleogram). A x-ray of the urinary system outlined with opaque dye
after it is injected into the bloodstream and then filtered by the kidneys into the
bladder.
Meatus. Urethral meatus, commonly called the "pee-hole," is the opening of the urethra,
normally at the tip of the penis in males.
Neo-urethra. A new section of fabricated urethra, constructed from transplanted foreskin
or Buccal mucosa, the lining inside the mouth. Such constructions are done in a
conservative, last-resort manner, using existing sections of urethra first.
Nocturnal emissions. Orgasms that occur involuntarily during sleep without direct
genital stimulation and commonly referred to as "wet dreams."
Orchids. Inflammation of a testicle due to trauma, metastasis, mumps or even with
infection elsewhere in the body.
Orgasm. A state of physical and emotional excitement that is commonly called a
"climax" or "to come" and in the male, refers to the peak of excitement when
ejaculation occurs.
Perineal. Area in front of the perineum which is defined as being behind the scrotum and
in front of the anus.
Penis. Also referred to as phallus; it is the cylindrical and pendulous male organ of
copulation and urination.
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Peno-scrotal hypospadias. Hypospadias in a severe degree, with the meatus opening
towards or at the base of the shaft of the penis.
Prostate. Gland that surrounds the neck of the bladder and the urethra in males;
secretes thin, opalescent, slightly alkaline fluid, as part of the seminal fluid.
Retrograde Ejaculation. Ejaculations go backward, propelling semen into the bladder
instead of out through the urethral meatus of the penis.
Scarring. Surgical scarring of the penis may be thick, stiff and even painful, as well as
impairing positive, sexual sensations.
Scrotum. The sacks or pouch of loose skin that hold the testes.
Semen. The combination of seminal fluid and sperm that make up the ejaculate.
Sloughing. Tissue that is transplanted to the penis in reconstruction separates by natural
process from the living body.
Sperm. The male sex cell produced by the testis and carried in the semen.
Stricture. It is a congenital or acquired, narrowing or constriction of the lumen of a tube
anywhere in the body. In hypospadias, it refers to the narrowing that occurs in the
neo-urethra section following surgery. Urine flow is impaired which can lead to
additional complications such as UTIs and diverticula. Stenosis refers more to the
narrowing of the urethral meatus at the very end of the urethra.
Subcoronal Hypospadias. Meatus opens just below the head of the penis on the upper
part of the undersurface of the penile shaft.
Tethering. A tying or binding of cords in the penis that is a suspect cause of chordee.
Testicle/testicles. Also testis and plural: testes, the male gonad or reproductive gland that
is usually paired and located in the scrotum. Testes produce sperm and
testosterone.
Torsion. Or penile torsion is a twisting of the shaft of the penis, so that the glans is
rotated from its normal orientation.
Undescended testicle. The medical term for a testis that fails to move from the abdomen
down to the scrotum via the inguinal canal is Crytorchidism. In the majority of
cases, descent does occur by four months of age. Otherwise, surgery is performed
to bring the testes down by age one. A higher risk of cancer is associated with
Undescended testicles, especially after age one.
Hypospadias
S.K. May
Urethra. In males, it is a canal for the discharge of urine and semen that extends from
bladder, through the prostate gland and the penis.
Urethroplasty. The type of surgery used to correct a hypospadia.
UTI. (Urinary tract infection). UTIs can affect the whole urinary system, from the
bladder, urethra, and in severe cases, even spread to the kidneys. Symptoms are
increased urinary frequency and urgency, burning on urination, elevated
temperature and other flu-like symptoms.
Ventral Surface. The underside of the penis where the meatus is located in hypospadias.
In relation to the body though, it refers to the front or anterior side.
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Hypospadias
padias
S.K. May
RESEARCH PROJECT
The purpose of this research project is to provide sexologists (especially sex therapists)
with an understanding of the condition and counseling needs of those effected by
hypospadias.
Use the following guideline to write your personal account of growing up and living with
hypospadias (hs). Expand on areas of special interests to you.
Background:
Background
1. Date of Birth and age
2. General location of area in which you grew up and now live.
3. Describe hypospadias at birth and penis at present time. Refer to anatomical
diagrams to indicate your own birth and after surgery positions. A photo is
appreciated but not necessary) Any family members with hs?
Surgeries:
1. Time line with each surgery and age.
2. Type and purpose of each surgery.
3. Outcomes of surgery (improvements and complications)
4. If there is scarring, how does it effect you? (appearance, sensitivity)
5. Physical conditions associated with condition/ surgery.
Psychological:
1. How parents explained condition, surgeries/treatments to you as a child.
2. Perception of how parents managed condition in childhood.
3. What do parents/you now say they regret in this management?
4. Present relationship with parents? Effect of hypospadias on other relationships.
5. In view of special concerns, how adequate was your early sex education?
6. Describe a particular good, bad and ugly experience/feeling regarding your
hypospadias. (What have your resolved regarding your hypospadias or how your
parents managed it on your behalf. Anything you may still be angry about?
Sexuality:
1. In view of special concerns, how adequate was your early sex education?
2. At what age do you recall sexual maturity(growth spurt, hair, muscles, ejaculation)?
3. Sexual orientation, marital/partner status. Children.
4. Sexual history (experimentation, loss of virginity, struggles, triumphs).
5. How having hypospadias has effected any of the following sexual activities: vaginal,
oral, anal, positions.
iiVITA
Hypospadias
S.K. May
Education:
Ph.D., Completion date 01/2004, Maimonides University, Miami FL
Masters of Art, Duel Degrees: Mental Health Counseling and
Marriage and Family Therapy, Webster University, Merritt Island, FL
Bachelor of Science in Nursing, Spalding University, Louisville, KY
Associate of Science in Nursing, Jefferson Community College, Louisville, KY
Certified Clinical Sexologist, Diplomate, American Board of Sexology at Maimonides
National Board for Certified Counselors, Board eligible
Certified Psychiatric and Mental Health Nurse, American Nurses Credentialing Center
Certified Hypnotherapy Completion date 3/2004
Other Certifications: Neurolinguistic Programming, Theophostic Ministry
Professional Rescuer CPR and First Aid, Domestic Violence Advocate
Professional Memberships:
National Board of Certified Counselors (NBCC)
American Counseling Association (ACA)
American Academy of Clinical Sexologist
Hypospadias and Epispadias Association (HEA)
Association for Spiritual, Ethical and Religious Values in Counseling, (ASERVIC)
Mental Health Counselors Association of the Space Coast
International Society for Psychiatric Mental Health Nursing
Kentucky Nurses Association (KNA)
Community Involvement: (present to past)
Keys to Live outreach radio program, WPIO, frequent guest speaker
Sunday school Teacher, youth class
Camp nurse, Nolynn Youth Camp, Buffalo, KY (20 years to present)
Mentoring for women's residential ministry
Developed for health professionals, a continuing education unit on domestic violence for
presentation by the Salvation Army Domestic Violence Shelters
Substitute teacher for Brevard County Public Schools and private schools
Girl Scout leader (12 years) Assisted 5 scouts in earning Gold Awards.
KY State Committee for National Nurses Week, 1992
Champions Against Drugs, Counselor for State Retreats
Big Brothers/Big Sisters of Kentucky
Boy Scouts of America, Cub Scout leader (3 years)
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Hypospadias
S.K. May
Professional Experience:
Keys to Life International Inc., Titusville, FL, 2001-Present
Therapist
Presently working with adults and children in marriage and family issues: relationship
and sexual problems, child discipline, anxiety and psychiatric disorders, food and
substance addictions. Trained to apply the very exciting and effective Theophostic
technique to childhood sexual trauma and other forgiveness issues.
Wuesthoff Hospital, Rockledge, FL, 1999-2002
Social Worker and Staff Nurse Positions
Covered in-patient therapy for Behavior Health Services. Assessed status of mental
health and social needs, incorporating brief crisis stabilization and family interactions.
Assisted further with community placements, referrals and insurance. In addition, served
part-time in a nursing capacity.
Spencerian College, Louisville, KY, 1988-1997
Nurse Educator
Instructed in mental health nursing in the Practical Nursing Program. During entire
tenure, provided students with clinical experience at State Psychiatric Institution.
Wrote effective curriculum to increase mastery and state-board pass rates. Developed and
held continuing education workshops for area nurses. Received "Teacher of the Year"
award at 1994 state convention and "Outstanding Instructor" in 1997.
Our Lady of Peace Psychiatric Hospital, Louisville, KY
Registered Nurse
Assisted in the founding and development of an in-patient unit for chemically addicted
women. Attained competency as a CO-leader for group therapy and in facilitating family
programs. Taught courses on the medical and physical aspects of addictions. Recruited
to design a program for semi-acute adult care, following that, implemented drug
prevention education for the children's treatment unit and served as a leader for family
education and support groups.
Methodist Evangelical Hospital, Louisville, KY, 1973-1978
Staff Nurse
Primary duty was obstetrics scrub technician in the labor and delivery room. Also
worked as a nurse on the post-partum unit and in the nursery.
Hypospadias
S.K. May
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