New Alternatives for IC Treatment

Transcription

THE ICA FAMILY OF SUPPORTERS
IN HONOR OF
For these contributions received from August 16, 2013 to February 15, 2014, the ICA is
profoundly grateful. The donors are listed after the honorees and remembered loved ones.
Amanda
Mr. & Mrs. Gerry Appleton
Mia Battistella
Dominic Battistella
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Rich & Kari Morrison
Gayle Bucher
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Bryan Deen
Laraine Carlton
From her children
Julie Chinitz
Shirlee K. Berman
Andrew Gargano
Lucille Gargano
Catherine Horine
Evelyn C. Thomas
Rebecca S. Johnston
Patricia Pannill
David J. Klumpp
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Scarlett Rangnow
The Honorable Darwin Foerster
Linda Salin
Dr. Susan E. Presberg-Greene
& Dr. Robert A. Greene
Marianne Schuster
Sylvia Ternes
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Melanie Snyder
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IN MEMORY OF
2
Rita Margaret Beitzer
George W. Beitzer
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Dr. Maurizio Albala
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Mr. & Mrs. Eric R. Zarnikow
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The Cheeky Bean
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Mr. & Mrs. David Hill
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Midrex Technologies, Inc.
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Give With Liberty Employee Donations
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Dr. and Mrs. Gene F. Stohs, MD
WAYS TO GIVE
The ICA is dedicated to helping all those living with IC as well as the healthcare providers and
researchers who strive to improve the lives of IC patients. Your contributions help us to continue
vital programs and services. Your donation dollars also allow us to continue to fund new IC research
projects as well as work closely with Congress to ensure ongoing IC-specific research funding. The
ICA is an IRS designated 501(c)(3) nonprofit charitable organization.
ICA UPDATE Winter 2014
TO CONTRIBUTE
n Online, go to www.ichelp.org/donate.
n By mail, send your contribution to:
ICA
1760 Old Meadow Road, Suite 500
McLean, VA 22102
Please make checks payable to the Interstitial
Cystitis Association or ICA.
Thanks for your support!
IN THIS ISSUE
Interstitial Cystitis Association
Editorial Staff
Lee Bryan Claassen, CAE
Publisher
Mark Toner
Graphic Design
Editor
Michael Satina
5
Board of Directors
Board Co-Chairs
Treasurer
Barbara Zarnikow
F. Neal Thompson, CFP
ICA Patient Advocate
Financial Services
Consultants
Eric Zarnikow, MBA, CPA
Operational and
Financial Executive
Board Members
Jann Keenan, EdS
Irma Rodriguez
The Coca-Cola Company
The Keenan Group Inc.
Joy H. Selak, PhD
Rick Lufkin
Non-Profit Founder
Anima Cell Metrology Inc.
and Consultant
Robert Moldwin, MD
Tony Tyler
Smith Institute for
Tyler Media
Urology North Shore LIJ Health System
Medical Advisory Board
Board Co-Chairs
Alan Wein, MD
University of Pennsylvania
Health System
Philip M. Hanno, MD
Health System
Members
David A. Burks, MD
Oakwood Healthcare System
Daniel B. Carr, MD
Javelin Pharmaceuticals
and Tufts New England
Medical Center
Daniel J. Clauw, MD
University of Michigan
Health System
Quentin Clemens, MD,
FACS, MSCI
University of Michigan
Medical Center
Ragi Doggweiler, MD
University of Tennessee
Robert J. Echenberg, MD
Institute for Women in Pain
Robert J. Evans, MD
Wake Forest University
Baptist Medical Center
Fred Howard, MD
University of Rochester
School of Medicine
David Kaufman, MD
Columbia College of
Physicians & Surgeons
Susan Keay, MD, PhD
University of Maryland
School of Medicine
Robert Moldwin, MD
Smith Institute for
Urology and Long Island
Jewish Medical Center
Diane Newman, RN, MSN
Medical Center
Christopher K. Payne, MD
Stanford University
Medical Center
Jeffrey Proctor, MD
Georgia Urology
Barbara Shorter, EdD, RD, CDN
Long Island University
John W. Warren, MD
University of Maryland
School of Medicine
Ursula Wesselmann, MD, PhD
University of Alabama at
Birmingham
Kristene E. Whitmore, MD
Drexel University College
of Medicine
Liaison to NIDDK
Chris Mullins, PhD
Basic Cell Biology
Program, NIDDK
Founder and
President Emeritus
Vicki Ratner, MD
Non-Invasive Approaches to Treating Pelvic Pain
A growing number of options
may bring symptom relief.
10 Strength in Numbers
Support groups provide
comfort, compassion, and
can-do measures for those
with IC.
[ DEPARTMENTS ]
ICA News
Research highlights for
2013, developments from
fall medical meetings, and
a record-breaking response
to a matching fund.
2
15
14
In Memoriam
19
Doctor’s Forum: Beyond
the Front Lines
Robert J. Evans, MD,
discusses the wide range of
options available when
initial treatments don’t work.
23
ICA Resources
New Alternatives for IC Treatment
From hyperbaric oxygen
and allergy treatments to
dietary supplements and
acupuncture, unconventional
options offer hope for IC
patients.
ICA Staff
Executive Director
Rhonda Garrett
Jo Moller
Patient Support Advocate
Manager, Association Services
Nicole Mehall
Jason Crosby, MA
Program Manager
Program Manager
1760 Old Meadow Rd., Suite 500 | McLean, VA 22102
[ ICA ANNUAL REPORT ]
A special insert offers highlights
of a busy — and successful — year
for ICA.
www.ichelp.org | ICAmail@ichelp.org
Cover Image ©DepositPhotos.com/Njnightsky
ICA UPDATE Spring 2014
1
ICA News
34th Annual Scientific Meeting in Las Vegas, Nevada. The IPPS
meeting, attended by physical therapists, gynecologists,
urologists, nurse practitioners, surgeons, psychologists, and
researchers, provided a detailed overview on the evaluation
and management of chronic pelvic pain disorders. The AUGS
meeting presented the latest advancements, research, and
technologies in urogynecology—a sub-specialty of urology and
gynecology and a growing part of the IC healthcare team. As
a result of these meetings, more clinicians were added to the
online ICA Healthcare Provider Registry.
Research Challenge Match Fund
ICA is thrilled to announce the Research Challenge Match Fund
resulted in raising $156,091! Our 448 donors contributed
$81,091. In addition, as promised, our generous anonymous
benefactor increased his matching donation from $50,000 to
$75,000. Research projects funded with this grant will
further enhance our quest for answers and focus on
identifying the causes of IC and exploring broadly applicable
treatments. ICA’s Pilot Research Program remains the
first and only IC-dedicated research program funded by a
non-profit patient advocacy organization. To date, the program
has funded more than 100 IC research projects, and it’s your
generous contributions that make this IC research possible.
Donate today at www.ichelp.org/donate.
Among the highlights from October’s meetings:
Possible Genetic/Environmental Factors Link IC
and Associated Conditions
At AUGS, Dr. Kristina Allen-Brady from the University of
Utah presented her study, funded in part by the ICA Pilot
Research Program, on the risk of associated conditions in
relatives of people with chronic pelvic pain syndrome. The
results of her study suggest that irritable bowel syndrome (IBS)
and fibromyalgia are likely to share underlying genetic and/or
environmental factors with chronic pelvic pain. Understanding
the genetic factors that underlie these conditions may help
ICA at AUGS and IPPS Annual Meetings
ICA attended two meetings last fall—the International Pelvic
Pain Society (IPPS) Annual Scientific Meeting in Orlando,
Florida, and the American Urogynecologic Society (AUGS)
IC Research
Highlights for 2013
Etiology
n Research on pain tolerance in women with and without IC
suggests that a deficit in the body’s natural pain inhibition
system may contribute to IC.
n A British review of studies that included over 1,000 women
with chronic pelvic pain (CPP) found that almost half of
the women had both IC and endometriosis. The findings
indicate that clinicians should actively look for IC in women
with CPP.
Epidemiology
n Studies in Taiwan found a link between IC and three other
diseases: anxiety disorder, hyperthyroidism, and coronary
heart disease. The researchers encourage clinicians treating
women for anxiety or hyperthyroidism to be alert to urinary
complaints, and those treating women with IC to screen for
heart disease risk factors.
n According to an analysis of data from the RAND IC
©DepositPhotos.com/Trans961
2
Epidemiology Study (RICE), IC symptoms are almost as
prevalent among men as women, indicating that the disease
may be underdiagnosed in American men.
Diagnosis
n The researchers who developed the Shorter-Moldwin
Food Sensitivity Questionnaire for IC/BPS remodeled the
original, lengthy version to a briefer 35-item list of the most
problematic foods and beverages.
n Swiss researchers found evidence of an immune response
in IC patients with Hunner’s lesions that could lead to a
noninvasive way to diagnose this type of IC.
Treatment
n Among a group of 27 IC patients with Hunner’s lesions,
the effectiveness of treatment with fulguration gradually
decreased over time, with success rates at two, five, and ten
months of 94.1, 70, and 33.3 percent, respectively.
n While IC patients without Hunner’s lesions experienced
improvements in symptoms, pain scores, and frequency of
episodes after a series of four botox injections, those with
the ulcers showed no significant change in any clinical or
urodynamic variable.
n Ninety percent of the 32 patients with refractory IC in this
study reported symptom relief one month after completing
with future IC studies and, eventually, better diagnostic tools
for IC.
pelvic floor. By strengthening core muscles, IC patients can
reduce the tension in pelvic floor muscles.
Pregnancy May Improve IC Pain
ICA joined forces with a research team from Drexel University
Medical Center for the 2011 Pregnancy and IC online survey,
the findings from which were presented at the AUGS meeting
by researcher Dr. Peter O’Hare. More than half of the nearly
400 women surveyed had relief of IC pain during their
pregnancy. The pain-relieving effect of pregnancy on IC appears
to remain stable throughout pregnancy, breastfeeding, and
subsequent pregnancies. Frequency and urgency also improved
during pregnancy in many of the women surveyed.
IC-Dedicated Session at IPPS
ICA Medical Advisory Board member Dr. Robert Evans
of Wake Forest University presented current strategies in the
management of IC, from diagnosis to treatment. He stressed
the importance of treating IC with a multidisciplinary,
multimodal approach, which was appreciated among the
diverse group of healthcare professionals in attendance.
Effect of IC on Sexual Function Should be Addressed
At the AUGS meeting, an interdisciplinary panel including
urologist Dr. Kristene Whitmore, urogynecologist Dr. Charu
Dhingra, and sex therapist Dr. Susan Kellogg-Spadt stressed the
importance of addressing sexual dysfunction in patients—
especially those with urogynecological conditions. The panelists
discussed the role of high-tone pelvic floor in sexual dysfunction.
Dr. Whitmore also discussed the importance of strengthening
postural stabilizer (core) muscles to help alleviate high-tone
a 12-week course of treatment with heparin and
lidocaine. Although the benefits gradually decreased after
that, they remained statistically significant for another
two months.
n A study of single vs. repeated injections of onabotulinum
toxin-a (BoNT-A) showed that two, three, or four injections
were more effective in decreasing bladder pain and increasing
bladder capacity than were single injections.
n IC patients who received hyperbaric oxygen (HBO)
therapy after treatment with dimethyl sulfoxide
(DMSO) had more substantive and longer-lasting
improvements in pain, frequency, and urgency of voids,
nocturia, and quality of life than those who only
received DMSO.
n In a Japanese study of eight women with refractory IC who
received electroacupunture combined with moxibustion
treatment, three women (38%) had significant responses,
and two were in remission for two or more years.
More News in Ultrasound Therapy
Dr. David Wiseman from the International Adhesions Society
presented updated findings of his 17-month study on the
efficacy of PainShield MD. This wearable device administers
low−frequency, low-intensity ultrasound to reduce pelvic and
urological pain (see story, p. 5). Dr. Wiseman’s extended
study included 16 women with a history of chronic pelvic or
urological pain and related symptoms, about one-fourth of
whom had IC. The results of his study found that about 70
percent of those studied had a good or moderate response to
the ultrasound therapy, confirming the benefits seen in his
prior studies.
Medical Information
n The ICA website, www.ichelp.org, was one of only four
English-language websites that met University of London
criteria for accuracy, credibility, readability, and quality of
IC information.
Basic Research
n When rats were exposed to repeated variate stress for
several days, they displayed increased bladder symptoms
as well as evidence of an inflammatory response in the
bladder. Further research could determine whether stressrelated symptoms in humans are related to an
inflammatory response.
Social Issues
n The greater the impact of IC symptoms on a woman’s
quality of life, the more depressive symptoms occur,
the more comorbidities (such as depression) she has, and
the greater the impact on work loss and productivity.
IC management should include psychosocial tools that
improve patient coping and self-management.
©DepositPhotos.com/Galina Zakovorotnaia
3
Welcome New ICA Board Members
Please join us in welcoming the following individuals to the
ICA Board of Directors:
Jann Keenan, EdS, is a health
literacy specialist and active
community volunteer. Since
1995, she has served as president
of the Keenan Group Inc., a
social marketing and multimedia
design firm. Keenan is also a
strategic partner with the
Institute for Healthcare
Advancement. To promote
Jann Keenan, EdS
health equity, Keenan develops
culturally relevant educational materials and curricula. She
helps agencies adopt policies to create system-wide change as
they work toward becoming health-literate organizations. She
received her EdS degree in instructional design from Indiana
University, Bloomington, Ind. An IC patient, Keenan and her
family call Maryland home.
4
Rick Lufkin is a serial
entrepreneur in the life sciences
specializing in early-stage
pharmaceutical, biotechnology,
and medical device companies.
He currently serves as CFO and
director of a firm exploring
and advancing real-time protein
identification. As president of a
specialty pharmaceutical
Rick Lufkin
company, he was involved with
the early drug approval process for Elmiron, working closely
with IC patients, physicians, and regulatory authorities. Lufkin
is an MIT graduate with an MBA from the Wharton School,
University of Pennsylvania. He and his wife live in New Jersey.
Joy H. Selak, PhD, became too
ill to work after being diagnosed
with interstitial cystitis and
other autoimmune and
neurological conditions at 40.
She found effective, supportive
care and asked her physician to
co-author a book with her about
their shared experience. You
Don’t LOOK Sick!: Living Well
Joy H. Selak, PhD
with Invisible Chronic Illness is
now in its second edition. In 2010, Selak underwent successful
surgery and began to regain her health. After 20 years of illness,
she is now working for an arts education non-profit and is
committed to helping others build meaningful lives with
long-term illness.
ICHope Self Management Module
ICA is excited to announce the release of our newest
complimentary online program, the ICHope Self-Management
Module. This free interactive program—the first of its kind—
is designed to help IC patients learn to better manage their
IC pain by adopting healthy, positive behaviors to prevent or
minimize pain and to cope with pain that does occur. In
addition, it shows patients how to implement these strategies
—at their own pace, when they are ready—to help
manage pain from IC. ICHope was created uniquely for IC
patients, who, along with ICA staff and experts in the
community, were integral in the development of this
program. Are you ready to manage your pain? To get started,
visit www.ichelp.org/ichope.
IC on TV
In October, CBS’s The Doctors welcomed Elizabeth
Bingenheimer onto the show. Bingenheimer has had IC since
February 2012. Frustrated by the lack of awareness and
understanding of IC in the
public, she spent months
contacting various media
outlets asking them to help
raise IC awareness. In
the episode, Bingenheimer
met with urologist Dr.
Jennifer Berman and
explained how IC affects
her on a daily basis. Dr.
Elizabeth Bingenheimer on the set of
Berman and The Doctors
CBS’s The Doctors.
host, Dr. Travis Stork, then
explained to the studio audience what IC is and some of its
common treatments. Bingenheimer’s TV appearance raised
awareness on behalf of the millions of people with IC, and
we thank Elizabeth for her dedication and courage.
O
ne of the challenges of a chronic pelvic pain condition like IC is that many of
the available treatments—instillation, medication, injections, surgery—can
cause additional physical and emotional pain before providing any relief. So
when we hear about gentle, non-invasive options, we naturally want to know more.
The modalities described below—low-level laser therapy (LLLT), therapeutic ultrasound,
and biofeedback—have brought symptom relief to many people suffering from chronic
pelvic pain conditions. For some, they were life-changing. Here’s what we
learned when we talked to practitioners who use these approaches, and a
few patients who benefited from them.
Non-Invasive
Approaches
to Treating
Pelvic Pain
A growing number of options may bring symptom relief.
—By Cheri Smith
Low-Level Laser Therapy
At a conference several years ago, physical therapist Isa Herrera, MSPT, CSCS, happened
upon something that would change her approach to IC treatment. It was a low-level laser,
a handheld device about the size of a flashlight that emits photon light without heat.
Herrera had elbow pain from the repetitive motions of her work, so she tried it—and was
stunned when she experienced immediate relief. So she bought the laser and began
experimenting with it for her own pelvic pain. When it worked, she decided to see if it
would help her patients with bladder pain.
©Dep
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m/Sc
tos.co
o
ositPh
ejor
“At first, I only used it on trigger points,” says Herrera, clinical director of Renew
Physical Therapy in New York City, “and my patients were getting immediate relief.”
Multiple trigger points within the pelvic area are associated with the bladder, causing
urgency and frequency, as well as pain and spasms in the bladder or the muscles
surrounding it. She began conducting clinical studies to determine the safest and most
effective approach to treatment—where to put the laser and how to angle it, how long
to use it, etc. Herrera’s pioneering work in LLLT for IC led her to develop a
treatment protocol, “The Herrera LLLT Protocol for Female Pelvic Pain
Conditions,” which she will release in May 2014.
which is not easily absorbed into human tissue, so it can
penetrate deeply—to about 2.5 inches. Importantly, this
frequency of light does not generate heat.
“Research clearly points to the fact that the laser cannot
produce heat,” Herrera says. “We’re dealing with very sensitive,
delicate tissue. You must not use a laser that has heat because
you don’t want to burn the tissue.”
Isa Herrera using the FDA-approved ML830 laser on a patient.
“
There are no injections, no surgery,
no instillation. And the aftermath is not
like other therapies—it’s gentle.
6
Low-level lasers do not produce sound or vibration either.
Instead, the light causes biostimulation at the cellular level.
This idea isn’t new—although he didn’t know exactly how it
worked, even Hippocrates
noticed the health benefits of
light and advocated sunlight
for healing.
”
Biostimulation is a chemical
reaction, much like the effect
of sunlight on plants, which
causes cell components to
— Isa Herrera, MSPT, CSCS
become active. Sheth explains
Instead of producing heat, low-level
that LLLT affects the cell’s
lasers cause biostimulation at the
mitrochondria, which are
Herrera likes that LLLT is non-invasive and noncellular level.
responsible for converting
pharmacological and that it helps the body heal from within.
oxygen and nutrients to energy. The light also increases blood
“There are no injections, no surgery, no instillation,” she says.
circulation and brings more oxygen to cells, which helps
“And the aftermath is not like other therapies—it’s gentle.”
reduce inflammation. And, studies show that LLLT aids in
wound healing, which has several implications for IC.
Although LLLT—also called cold laser therapy—works well
for many people, Herrera is quick to point out that it is not a
“All of this creates an analgesic [pain-relieving] response,”
magic bullet. “Because IC is so complicated, I don’t think
Sheth says. She’s found LLLT especially helpful in reducing
anything will work in isolation,” she says. Herrera always
soreness in the places where muscles attach to bone, such as
combines LLLT with other physical therapy, such as myofacial
the spots where the abdominals or adductors connect to the
release or pelvic floor work, and her patients may be undergoing
pubic bone.
other medical treatments as well.
Hina Sheth, MS, PT, OCS,
MTC, practitioner and owner
of Philadelphia-based
Rebalance Physical Therapy,
also uses LLLT as an adjunct
treatment for IC and other
pelvic pain conditions.
“In areas that are really
stubborn, adding LLLT to
Hina Sheth, MS, PT, OCS, MTC
physical therapy will help
reduce tenderness and give quicker results,” she says.
Herrera and Sheth both use the FDA-approved ML830 laser.
The wavelength of the light from the laser is 830 nanometers,
One patient whose weekly sessions with Sheth include LLLT
says that the laser has greatly helped reduce her vulvodynia
pain. About 4 years ago, Debbie suddenly began having vulvar
pain that she eventually learned was linked to the hardening
of a 30-year-old episiotomy scar. She was prescribed various
antidepressants and spent a lot of time sitting on ice packs, but
couldn’t get relief. She was finally referred to Sheth, who
began manual therapy to stretch and soften the scar tissue.
When Sheth added LLLT to her treatment, Debbie noticed
even more improvement. “I’m about 90 percent healed now,”
she says. “I feel so much better.”
LLLT is given over the course of one to 12 physical therapy
sessions, for 5 to 10 minutes each time. Most people, like
Debbie, feel nothing during treatment; some report a warm
What You Should Know
Before Trying LLLT
n The laser must be a low-level laser—it must not generate heat.
Herrera recommends the ML830 laser.
n The practitioner should:
• Offer informed consent.
• Explain the benefits and risks.
• Explain the reason for using it.
• Tell you how many times they’ve used LLLT.
• Tell you when you should see a difference from treatment.
• Tell you what to expect after treatment.
n You should do your own research on LLLT so that you are
Source: Isa Herrera, Renew Physical Therapy
or tingly feeling. Relief can come immediately, or it may take
several sessions. LLLT has no official side effects, but there
might be some discomfort a day or so afterward from the
accelerated healing process—like soreness after a workout while
your muscles heal, says Herrera.
Most people are familiar with diagnostic
ultrasound, which bounces sound
waves off of internal structures to
show a picture of the area of interest.
Therapeutic ultrasound directs lowfrequency, low-intensity sound waves
toward the source of pain.
“Its main effect on tissues is through warmth,
but not like putting a heat lamp on them,”
explains David Wiseman, BSc, PhD, MRPharmS.
“Ultrasound penetrates tissue, and we think one
of the ways it works is by warming tissue just
enough to cause blood vessels to dilate and deliver
more blood and oxygen to affected tissues.” This
in turn reduces spasms of the pelvic floor muscles,
which we now know is a key component of many
types of pelvic pain, including IC.
A portable therapeutic ultrasound device called
PainShield MD has been made available to the
public primarily through the efforts of Wiseman,
whose research showed its benefits in the treatment
of chronic pelvic pain. Wiseman, who founded the
International Adhesions Society, has spent 25 years
Among the results were significant reductions in bladder
pain when urinating, as well as fewer occurrences of painful
urination, especially at night. The women also said they
needed less pain medication, slept better, and had a better
quality of life.
Impressed with the results and eager to make the treatment
available to more people, Wiseman created a company called
KevMed to bring PainShield MD to the market. (In 2008,
NanoVibronix, the company that manufactures the device,
received FDA clearance to market it for pain relief.)
prepared and know what to expect.
Therapeutic Ultrasound
researching adhesions and pelvic pain and working with
patients suffering from them. His study of the device’s effect
on chronic pelvic pain, reported last year, showed that after
using it for 17 months, 15 of 16 women experienced relief
from severe and persistent chronic pelvic, bladder, genital,
bowel, and musculoskeletal pain.
“Treatment options are pretty slim for IC,” Wiseman says,
noting that PainShield MD is another non-invasive option for
treatment: “It doesn’t require surgery or medication, is easy
to use, and if it doesn’t work, you just take it off,” he says.
“As far as we know, there are no long-term consequences.”
Wiseman says ultrasound also appears to have an effect on
nerves because some patients get rapid relief when they direct
the ultrasound toward the S3 area on the spine, where nerves
communicate pain signals from the pelvis to the brain.
He theorizes that ultrasound may help to
restore the normal sensitivity and firing of
the nerves involved in IC.
Therapeutic ultrasound may help restore the
sensitivity and firing of nerves involved in IC to
normal levels.
PainShield device, courtesy of Dr. Wiseman.
Printed with permission.
7
How quickly patients respond and how long the effects
last vary. Some people have immediate relief, while it’s more
gradual in others; likewise, one person may need daily
treatment and another weekly. To figure out how to get the
most from the device, Wiseman says, “you need to play with
it to see what works. Use it at different times of day, put it over
different areas on the body, and try wearing it while driving,
walking around, and sleeping.”
“
Wiseman describes the experience of a patient who had severe
IC flare-ups every few months. Before using PainShield
MD, the pain would nearly immobilize her for a couple of
weeks, and she’d have to get to the doctor for tests and
drugs. “Now when she feels it starting, she puts the pad over
S3,” says Wiseman, “and within 30 minutes, she feels like a
fire has been extinguished.”
For many IC patients, pain is linked to
tense muscles, although we don’t know
whether the pain causes the tension,
— Amy Stein, DPT, BCB-PMD
or vice versa.
8
”
Lynne had a similar experience. A few months ago, her IC
pain was at its worst. “It was like someone had taken my
bladder out, scrubbed it with coarse sandpaper, and stuck it
back in,” she says.
care for failure to thrive. Fortunately she regained her will
to live; she then decided to have her colon removed. But she
continued to suffer, and worried that the colectomy had
been a mistake.
Wiseman heard about her and asked if she’d like to be part
of his PainShield MD pilot study. “It has totally changed
my life,” Elizabeth says. Her bladder pain is gone, and she
has enough relief from the adhesion and intestinal pain to be
able to function.
Elizabeth is among those whose pain decreases gradually when
using PainShield MD. “It takes about a week to work at full
capacity for me,” she says. The relief then lasts for several days
at a time.
The device consists of a power source that’s about the size of
a TV remote, connected by cable to a bandage-size adhesive
patch containing the 3 cm ultrasound transducer disc. It’s
small enough and light enough (3 ounces) that you can hide
it beneath your clothes and move around while you wear it.
To use it, you put the patch over the area to be treated and
turn it on. It works in cycles of 30 minutes on, 30 minutes
off, for up to 6.5 hours at a time before needing a two-hour
recharge. PainShield MD costs $875, and is only available by
prescription in the U.S.; most other countries do not require
a prescription.
Biofeedback
She wasn’t sleeping or eating and was afraid she might try to
hurt herself to escape the pain. While looking for solutions
online, she came across information about PainShield
MD. She talked to Wiseman and decided to give it a try. She
responded almost immediately.
If you’ve ever stepped on the scale, seen the numbers, and
immediately changed how you eat, you’ve experienced a type
of biofeedback. Put very simply, it’s a method of creating
awareness of your body and providing information about what
happens when you change something you’re doing.
“I put it on, and it kind of hurt—but in a different way—and
then it just worked,” she says. “Within five minutes, I had
relief.” Now she feels waves of warmth when she wears it, but
no discomfort.
During physical therapy for pelvic pain, biofeedback is a tool
to teach people to become aware of their pelvic floor muscles
and regain control over them to manage symptoms. Problems
with these muscles, whether they are too weak or too tight, are
linked to bladder and pelvic pain, as well as urinary urge,
frequency, and leakage. Through biofeedback, you can see what
your muscles are doing when you have symptoms—whether
weakness or over-activity is contributing to your problems.
Then you can use biofeedback to learn how to strengthen or
relax the muscles to get relief.
Without treatment, Lynne’s pain is severe, so she wears
PainShield MD all the time, taking it off only when the device
needs recharging. She still has some pain, but it’s bearable now.
“I feel like I have a life again,” she says.
Elizabeth echoes that sentiment, describing her experience
with PainShield MD as being “set free to live.” For more
than 30 years, she has suffered from chronic pelvic pain and
bowel problems related to pelvic adhesions. A few years
ago her situation was so desperate that she was in hospice
“For many IC patients, pain is linked to tense muscles,
although we don’t know whether the pain causes the tension,
or vice versa,” says Amy Stein, DPT, BCB-PMD, practitioner
and founder of Beyond Basics Physical Therapy in New York
City. She first teaches patients
deep breathing techniques for
muscle relaxation, then uses
biofeedback to show how
breathing affects muscle tension
and what a relaxed muscle
feels like.
Helen receives biofeedback
during physical therapy sessions
Amy Stein, DPT, BCB-PMD
for pelvic floor dysfunction.
To get relief from chronic constipation, hemorrhoids, pain
and spasms with urination, urinary frequency, and vaginal
pain, she’s tried almost everything, including diet changes,
antibiotics, acupuncture, probiotics, special soaps, and vitamin
B injections.
Helen’s daily physical therapy sessions with Stein include
massage and myofacial release, and she does two rounds of
stretching and relaxation exercises at home every day.
Biofeedback gave her additional insight on her breathing,
she says.
“I realized that what I thought was correct breathing was not
relaxing my muscles enough,” says Helen. “By trying different
techniques and positions and looking at the biofeedback
screen to see which one of them relaxes my pelvic floor the
most, I finally understand what I should do and how I should
breathe during the massages and while I’m doing my stretches
and exercises.”
search comes up with several options. Stein supports this
approach, but stresses the importance of working with a
physical therapist at first to learn how to use the equipment
and the proper techniques for muscle work.
For those who are interested in self-care options, Stein has
created a home-based instructional video for pelvic and
abdominal pain relief. It provides information about pelvic
floor dysfunction and teaches relaxation breathing, selfmassage, stretching exercises, basic nutrition, and behavioral
modifications to promote healing. Healing Pelvic and
Abdominal Pain: The Ultimate Home Program for Patients and
Guide for Practitioners, will be available this spring.
Cheri Smith is a Maryland
freelance health writer
and coach and a regular
contributor to ICA Update.
9
For More Information:
PainShield MD
Like other non-invasive treatments, biofeedback does not hurt.
Electrodes placed on the body detect muscle activity and
transmit that information to a monitor so you can see what
the muscle is doing during symptoms, activity, or rest, as well
as how it responds when you try to control it. It’s a good
teaching tool because you can see onscreen how your actions
affect the muscle, and learn what it feels like when you make
the muscle work the way you want it to.
As with most treatments, the time it takes for biofeedback to
help depends on the individual. Stein stresses that the
important thing is to incorporate what you learn during
treatment into daily life. “Every hour you need to do
breathing exercises and practice pelvic floor relaxation, so that
you can use it when you have symptoms,” she says. “It’s a lot
in the beginning, but it’s important because it might take a
while to figure out how to use the muscles properly.”
David Wiseman, BSc, PhD
MRPharmS
KevMed™, LLC, Dallas
www.kevmed.com
www.adhesions.org
Low Light Laser Therapy/
Biofeedback
Isa Herrera, MSPT, CSCS
Renew Physical Therapy
New York City
www.renewpt.com
Hina Sheth, MS, PT, OCS, MTC
Rebalance Physical Therapy
Philadelphia
www.rebalancept.com
Amy Stein, DPT, BCB-PMD
Beyond Basics Physical Therapy
New York City
www.beyondbasicsphysicaltherapy.com
©DepositPhotos.com/Scornejor
For patients who want to do biofeedback at home, there are
companies that rent or sell biofeedback products; an online
Strength
in Numbers
Support groups provide comfort, compassion,
and can-do measures for those with IC.
— By Lucy Hood
J
ennifer Zuzelski admits that starting a support group for
patients with IC in the Washington, D.C., suburbs last
fall was, in part, a “selfish act.”
“I just really needed someone to talk to,” she says.
“I was in the midst of a horrible, horrible flare, the worst flare
I’ve ever had,” Zuzelski says, and that’s when she realized she
needed to talk to other people who could understand her pain.
“It’s like any chronic illness. Your friends and family,” she says,
“get sick of listening to you, plain and simple, and you really
can’t burden them with it. How many times can you say, ‘Oh
my god, I’m having this horrible bladder day?’ And they have
no idea what you’re talking about.”
The same six people have been coming ever since, she says,
including one woman who said that before last September,
she had not talked to anyone other than her doctor about
the disease.
That, Zuzelski says, was “huge.”
Fighting Isolation
Interstitial cystitis is a crippling illness that often leaves people
housebound and isolated. The pain and the frequent urination
make it difficult to stray too far from a bed or a bathroom,
leaving many of those who suffer from the disease feeling
disconnected from friends and family, not to mention the rest
of the world.
While medication, physical therapy, and diet regimens help
different patients to varying degrees, treating the illness is far
from an exact science. Some react well to certain medications
©DepositPhotos.com/Paha_L
When Zuzelski learned that the nearest IC support group
was in the Baltimore area, she decided to form one closer to
home and promptly took the necessary steps. She found a
location and publicized the new group, mainly through her
physical therapist, her doctors’ offices, and the Interstitial
Cystitis Association, and was pleasantly surprised when six
people showed up for the first meeting.
“It was a very selfish act,” she says, “but through the selfish
act, at least six people are being helped every month.”
and treatment plans, while others do not. Some can minimize
the symptoms largely through diet and other lifestyle changes,
and others cannot.
In addition, interstitial cystitis is not visible. Those who suffer
from it tend to look just fine, making it even more
difficult for those who do not have it to understand the agony
it can cause.
All of these are reasons why people across the country have
found great comfort, compassion, relief, advice, and most
importantly, understanding, in the many support groups
that exist from coast to coast.
At Zuzelski’s support group in Northern Virginia, the small
group of women represents a wide range of experiences
with IC, she says, “and we meet every month. They don’t miss
a meeting.”
Zuzelski very intentionally runs an informal support group. She
provides those who come with a disclaimer making it clear
that what’s discussed should not be taken as medical advice. She
also has a topic for each session, but it’s more of a suggestion
than anything else.
Her main goal, she says, is for the NOVA (Northern Virginia)
IC Support Group to be a social group. “We are there to be
an ear and a shoulder for each other,” she says.
Coming Together
Zuzelski’s group is one of many around the country
that are loosely structured, informal, and social in
nature. Others, often those affiliated with doctors’
offices, have a more formal agenda, typically one
built around specific topics and guest speakers.
One of those is the W.I.S.H. support group in
St. Louis, Missouri. It’s run by Bonnie Hana, a
former teacher who was first diagnosed with IC
nearly 20 years ago. It was a time, she says,
“when they were putting women in institutions
to let them scream, and they said it was all in
their head.”
That didn’t happen to her, but she was largely
bedridden for five years until she found a
doctor who knew enough about IC to prescribe
medication that over the years has largely mitigated
the symptoms.
Several years ago, the nurse practitioner in her doctor’s office
called her, said they were thinking of starting a support group,
and asked her if she would be willing to be a co-facilitator.
The nurse practitioner took care of the logistics. She found a
meeting room, organized the speakers, provided IC-friendly
food, and publicized the event. Hana ran the meetings.
“I began the group, ended the group and tried to keep
us together,” she says. “I became the lead person with IC.”
The group meetings, which are on hiatus with tentative
plans to resume in the spring, took place every other month
from September through May for seven years. They featured
a series of speakers addressing a range of IC-related topics
followed by a question-and-answer session and any off-topic
issues that group members wanted to raise.
The lineup of speakers included physicians, social workers,
nurses, nutritionists, physical therapists, researchers, and a tai chi
instructor, Hana says, and the 10 to 30 people who showed
up at any given meeting came away with ways to live with IC.
“You don’t have to be isolated in the house and never go out,”
she says. “You learn where the restaurants are outside of your
house, that if you are going to be a while, you need to take some
food with you so you can eat while you’re out.”
In short, she says, support group attendees “wanted help
with living their lives, and that’s what we offered.”
ICA Offers Support Online
There’s strength in numbers for those living
with IC. For a list of IC support groups
across the country and around the world, visit
www.ichelp.org/SupportGroups.
Not every community has its own support group, but ICA’s Online Support
Community is a place of peace, hope, and advice providing comfort for
patients, family members, friends, and healthcare professionals looking for
ways to better understand the impact of IC.
ICA’s Online Support Community is a secure, peer-to-peer, moderated forum
where topics like “Living with IC,” “IC Diet,” and “Management of IC Pain” are
frequently discussed. We invite you to join us in the community, where you
can be connected to hundreds of other people experiencing similar symptoms,
situations, experiences, and emotions.
To register and log in to the support group, visit
www.ichelp.org/OnlineSupportCommunity.
©DepositPhotos.com/Andrey Popov
11
Models of Support
Another configuration adopted by some support groups
is a fusion of the structured and the not-so-structured
meetings. Dietician Elizabeth Braun runs one such group
for the Female Pelvic Health & Gynecology practice,
which is part of the Grand Rapids Women’s Health center
in Michigan.
The Grand Rapids group meets four times a year. Two of the
meetings feature guest speakers and two are open discussions.
For the past five years since Braun took over as group leader,
anywhere from 10 to 20 people have shown up for the
two-hour meetings, which take place in January, April, July,
and October.
Two of the most popular speakers, she says, address issues
related to stress/anxiety and physical therapy. Other topics
include medication, pain management, and diet.
12
In both the speaker meetings and the discussion meetings,
Braun says, there’s an opportunity for group members to
bring up whatever issues or concerns they might have. In
the speaker meetings, specific patient concerns are
addressed during a question-and-answer session and at the
end of the meeting. In the open discussion meetings, she
says, everything comes up.
and asking everyone to introduce themselves. That, she
says, usually helps them get more comfortable, and the
discussion flows from there.
Braun makes sure everyone has a chance to speak, and she
provides them with whatever feedback she can. If it’s related
to diet, she can address the issue directly. If it’s beyond
her area of expertise, she encourages them to talk to their
healthcare providers.
Ultimately, she says, one of the goals of the group is to make
sure that IC patients in the Grand Rapids area have access to
accurate information.
The meetings, she says, also provide participants with an
opportunity to learn about coping mechanisms that have
worked for other people. In addition, they get to know each
other, exchange emails, and quite often organize their own
IC-friendly dinners.
The disease is isolating, Braun notes. “Sometimes they just
need the support because they feel like they’re the only ones
that have the problem,” she says.
Setting the Agenda
The disease is also invisible.
Braun is a dietician with the Grand Rapids center, and part
of her job is to counsel IC patients about their diet, so she’s
very familiar with the various ramifications of the disease.
She begins the discussion meeting by going around the room
It comes with crippling pain and frequent trips to the
bathroom, but people can’t see it, and because they can’t see
it, says Grace Ballard, it’s harder for them to understand.
Support Group Dos and Don’ts
General Dos:
n Have a plan, think it through, and be organized.
n Publicize meetings and send out reminders.
n Make sure patients know what to expect from the group,
whether it’s a social, discussion-based group, or one that
features speakers and expert advice.
n Have a written philosophy and statement of purpose
(see page 13).
n Show up on time.
n Have a sign-up sheet.
n Have a back-up plan in case the speaker or the original plan
falls through.
n Make sure speakers have the expertise to provide accurate
and pertinent information.
n Encourage group members to take notes.
n Communicate with other local groups to avoid possible
conflicts and to promote each other’s work.
n Take advantage of support group resources from ICA, the
American Self-Help Group Clearinghouse, and other
organizations.
Discussion Group Dos and Don’ts:
n Ask newcomers to share their stories first.
n Give everyone a chance to say what’s on their mind.
n Redirect those who get off-topic.
n In a large group, give out numbers to those who want
to speak.
n Do not allow one or two people to dominate the meeting.
n Do not permit the use of foul language.
n Avoid having formal meetings in peoples’ homes.
Ballard runs a patient support group in Tulsa, Oklahoma.
She’s a licensed clinical social worker who has had IC for 10
years, although, like many, she suffered from symptoms for
much longer before being formally diagnosed. Ballard
coordinates with a nurse at her doctor’s office to organize
and run the meetings, which take place four times a year.
In ranking the various hurdles patients face, she put pain at
the top of the list. Second, she says, is adhering to a high
alkaline diet, and third is isolation.
Ballard says she would like to see the emergence of more
support groups. She, like several people interviewed for this
story, says that people sometimes drive an hour or more to
attend the nearest meeting, and they would be better served if
they had other, not-so-distant options.
At the same time, however, Ballard says she also understands
how difficult it can be to sustain a meeting year after year. The
crippling nature of the illness, she says, can make it difficult
to leave the house, especially at the end of a long day or a
long week.
That said, Ballard and others with experience running IC
support groups have learned along the way that there are certain
things one can do to ensure greater success. She, for example,
always has a back-up plan in case the scheduled speaker falls
through. One such plan led to a recent potluck, of sorts.
The person slated to speak could not make it, so Ballard asked
patients to bring an IC-friendly dish, she provided recipes,
and the group participated in an online chat with a nutritionist.
Ballard is a licensed clinical social worker who is adept at
dealing with her own illness. She, like many successful group
leaders, has a background that lends itself to leading,
organizing, and facilitating group discussions. Hana and
Linda Benecke, who runs a group in Cherry Hill, New Jersey,
are former teachers; and Zuzelski has a teaching certificate
and a degree in psychology.
It’s important, Benecke says, to have a plan, to think it through,
to be organized, and to show up on time. She’s been the lead
facilitator for the South Jersey IC Support Group since 1997,
and over the years she’s come up with her own list of dos and
don’ts, many of them gleaned from the New Jersey Self-Help
Group Clearinghouse. A support group for support groups,
the clearinghouse provides resources and training as well as a
directory of more than 8,000 community-based groups.
Benecke’s IC support group convenes every other month on a
Saturday afternoon. On the Monday before, she makes roughly
Statement of Purpose
It’s important that everyone understands the purpose of a
support group—so important, in fact, that Linda Benecke reads
her New Jersey group’s statement of purpose at the beginning
of each meeting:
The purpose of this IC group is to provide IC support through a
forum of open discussion about IC. This group does not engage
in the practice of medicine. It is not a medical authority nor does
it claim to have medical knowledge. In all cases we recommend
that you consult your personal physician regarding any course
of treatment or medications.
40 calls to remind people of the upcoming meeting. When
the meeting begins, she calls on newcomers to share their story
and gives the rest of the group a chance to ask them questions
and provide helpful suggestions.
After the newcomer introductions, Benecke then opens up
the discussion for others to share whatever is on their mind,
all the while making sure that the conversation stays on the
topic of IC and that everyone has a chance to talk.
Benecke also keeps an attendance list and recommends that
people bring pen and paper to take notes. If there’s a large crowd,
she notes, there needs to be more of a structure, and one way to
create that is to hand out numbers to those who want to speak.
“
...other people are going through
what you’re going through and they’re
figuring out ways to live fulfilling lives.
”
Benecke also discourages the use of foul language as well as the
use of someone’s home to hold a meeting. Home-based meetings,
she says, can easily be fraught with disruptions, and some people
are simply uncomfortable going to other peoples’ homes.
In the end, Benecke says, it’s her goal to create a meeting that
allows those who suffer from IC to feel less isolated and to walk
away with the tools they need to overcome the challenges of
IC and live a full life.
“You realize other people are going through what you’re
going through and that they’re figuring out ways to live
fulfilling lives,” Benecke says.
Lucy Hood is a Raleigh, N.C., freelance writer.
13
In Memoriam
Allison J. (“AJ”) Maupin
D
escribed as playful,
introspective, and
opinionated by her
family, Allison J. Maupin
struggled with IC for her
entire adult life. Known as
“AJ” to her friends and
family, Maupin first started
suffering from bladder
infections as a freshman
in college. As her condition
grew worse, the young woman who loved gymnastics,
swimming, and cheerleading returned home to Nevada,
ultimately graduating with honors from the University of
Nevada, Reno.
14
Cheryl Howell
A
fter Cheryl Howell passed away in 2012 at the
age of 52, her family was determined to ensure
that her battle against IC continued.
“She couldn’t accept that there was no cure, and we can’t
either,” says Amy Tracy, Cheryl’s daughter. “We wanted
to continue to fight her fight.”
The North Carolina grandmother of three—known as
“Nana”—worked for an insurance company for many years
and was “a kind and caring person who always put others
before her,” said Tracy. “She was very loving—her family
was her number-one priority.” Diagnosed with IC in
2008, Cheryl continued to put her family first, serving
them dinner before preparing her own IC-friendly meal of
steamed rice, cauliflower, and baked chicken.
“She was the kind of person who led the way in everything
she did,” said Michael, AJ’s brother. “Anyone who knew her
then would think that there was nothing in the world that
could get in her way. Sadly, those people would have been
mistaken. IC can get in anyone’s way.”
For most of her adult life, AJ faced a never-ending cycle of
medications, new treatments, recovery, and relapse as she
struggled to cope with IC, visiting doctors across the country
in search for a cure. Her brother and her mother, Carole,
struggled to help care for her for two decades. Her longtime boyfriend, Drew, also helped her make needed changes
in her diet and lifestyle, giving her loved ones hope for the
first time.
“She intensely loved her brother, and there wasn’t anything
she wouldn’t do for him,” Carole said. “Then their roles
reversed, and there wasn’t anything he wouldn’t have done
for her. That was a beautiful relationship.”
AJ passed away in November 2013. She was 41 years old.
Her obituary, which included a request for donations to
ICA, helped educate people in Reno about IC, Carole says.
“The miracle of all this was, that for more than 20 years
this woman never stopped dreaming of the life she could
have, and trying to make that life happen,” said her
brother, Michael. “Maybe trying too hard, or in the wrong
way, but trying.”
The memorial walk for Cheryl Howell (right)
raised more than $8,000 for IC research.
Amy and her husband, Mark,
commemorated Cheryl’s life with a memorial walk in
suburban Charlotte in September 2013. More than 130
people attended the two-mile walk, which ended with the
commemoration of a memorial tree and raised more than
$8,000 for IC research, which Tracy called a “bonus.”
“We wanted to spread the word about IC and what we can
do to treat it,” Tracy said of the walk, which the family
hopes will become an annual event.
You can honor the lives of AJ, Cheryl, and others in the IC
community who have passed away by making a memorial
donation at www.ichelp.org/memorial. Memorial donations to
ICA give hope to the millions of people with IC and their
families by providing funding for IC research, advocacy, and
education programs.
2013 Annual Report
F
iscal year 2013 was a busy one for the Interstitial Cystitis Association. From a recordsetting Patient Education Forum and expanded research opportunities to the launch
of online self-help modules for patients and continuing education offerings for healthcare
practitioners, ICA continues to work to make the lives of those suffering from IC more
manageable, and to engage the medical community in better diagnosis, treatment, and research
towards an eventual cure.
Letter from the EXECUTIVE DIRECTOR
In 2013, ICA worked with members of Congress, the National Institutes of Health, and other
federal agencies to ensure that IC remains a part of the conversation as the nation and its
policymakers continue to grapple with issues involving pain treatment, management, and
research. Our efforts have won federal funding to continue the search for a much-needed
diagnostic test that could potentially speed the diagnosis of IC and improve its treatment,
while your dollars continue to fund novel approaches to treating IC through the ICA Pilot
Research Program. Our Patient Forum brought together patients, healthcare providers, IC
researchers, pharmaceutical representatives, and others—including some IC patients who had
never been in the same room as others suffering from the condition. We continue to make
strides in breaking the crippling isolation that often accompanies IC through our online selfhelp tool, ICHope, as well as social media and public awareness campaigns that appeared in
national media and on more than a thousand billboards across the country.
A2
Lee Bryan Claassen, CAE —
ICA Executive Director
At the same time, ICA has become a stronger association. We established a board recruitment
process which resulted in ten well-qualified applicants interested in serving on ICA’s Board of
“
Directors. Our engagement on social media and public awareness campaigns have resulted in
staff, board of directors, and the
Update (visit ICA’s website for a complete list).
broader IC community, stand
The year just passed also marked a transition for the association with my appointment as ICA’s
I, along with the rest of ICA’s
increased attention and use of ICA’s online resources and materials, available at www.ichelp.org.
We’re also grateful for our growing family of supporters, who are honored in each issue of ICA
new executive director. I joined ICA in early 2013, following a variety of positions in health and
prepared to continue the search
science-based organizations, including my most recent role as director of the Spinal Research
Foundation, a patient advocacy organization. I’ve been energized by the opportunity to help
for better IC treatment—and
improve the quality of life for those suffering with IC.
ultimately, a cure.
I, along with the rest of ICA’s staff, board of directors, and the broader IC community, stand
”
prepared to continue the search for better IC treatment—and ultimately, a cure.
ICA Executive Director
ICA 2013 Annual Report
ADVOC AC Y
T
he ICA remains true to its mission to advocate for the needs of people with interstitial
cystitis, as well as those of the healthcare providers, researchers, and others who work
to improve the lives of IC patients. We also empower people with IC to advocate for themselves.
In 2013, we continued to advocate tirelessly to ensure that we do not lose the momentum the
IC community has gained.
Dr. Daniel B. Carr, MA, MD
At NIH
ICA’s advocacy efforts helped lead to the
ICA representatives visited leaders of three
nomination of Dr. Daniel B. Carr, a member
key institutes at the National Institutes of
of ICA’s Medical Advisory Board, to the NIH
Health to discuss their portfolios of IC-
Interagency Pain Research Coordinating
related research and potential opportunities
Committee. ICA Executive Director Lee
for collaboration. At NIH’s National Center for
Claassen was also selected to serve on the
Complementary and Alternative Medicine
Public Education and Communications
(NCCAM), ICA representatives shared the
Working Group of the same committee. Dr.
interest of the IC community in complimentary
Carr’s selection into the Committee means
and alternative medicine (CAM) therapeutic
that IC will not be left out of the conversation
options and shared research from IC patients.
as the committee works to create
Leaders at the National Institute of
comprehensive population health strategies
Neurological Disorders and Stroke (NINDS)
for pain prevention, treatment, management,
urged ICA representatives to remain active
and research, as well as identify critical gaps
participants in the Institute’s Pain
in basic and clinical research on the
Consortium. At the National Institute of
symptoms, causes, and treatment of pain.
Diabetes and Digestive and Kidney Diseases
ICA leaders met with key lawmakers to advocate
for research and public health initiatives.
Other Advocacy
ICA provided oral
On the Hill
testimony at a Food and
In January and in June, ICA representatives and
Drug Administration
IC advocates visited more than 30
public hearing on
Congressional offices to reinforce the message
chronic opioid therapy,
whose role in treating
that biomedical research and public health
initiatives are essential to help find answers
and meet the special needs of the more than
ICA representatives met with leaders at the National Institutes of
Health to discuss current IC-related research and potential opportunities
for collaboration.
chronic pain conditions
like IC has been
scrutinized in recent
12 million people affected by IC. Advocates
asked representatives to consider investing
(NIDDK), the conversation focused on the
years. ICA urged the FDA to ensure that patients
more money in overall biomedical research as
Multidisciplinary Approach to Pelvic Pain
with chronic pain have access to these critical
well as IC-dedicated research at the National
(MAPP) Research Network, in whose steering
pain medications as the agency moves forward
Institutes of Health (NIH), including IC in
committee ICA participates. Funding for MAPP
with regulatory work on the serious issues of
the scope of the Department of Defense
was approved for a second five-year period,
opioid addiction and misuse. ICA also attended
Peer Reviewed Medical Research Program,
permitting the researchers to continue to
FDA meetings on patient-focused drug
and funding the Centers for Disease
focus their efforts on IC and chronic prostatitis.
development. ICA representatives also met
Control and Prevention (CDC) IC Awareness
NIDDK also released four new
with the Centers for Disease Control, which
and Education Program.
research opportunities for IC researchers.
has a cooperative agreement with ICA.
A3
RESE ARCH
T
Therapeutic Effects
of Delta-Mu Opioid
Agonist, led by Dr.
he ICA funds small research projects, advocates for government funding dedicated
Matthew Fraser of
to IC research, and helps keep the research focused on patients by serving on
Duke University
research steering committees and panels.
Medical Center in
Durham, North
Carolina. His study
“
will assess how
The ICA was the first organization
different opioid
from which I sought funding five years
receptors on pelvic
ago for my ideas related to improving IC
diagnosis … I was introduced to a
remarkable organization that is truly
passionate about and dedicated to
improving the lives of those with IC and
”
that serves as a valuable resource to me
as a researcher in the field.
Dr. Matthew Fraser
organs affect pain
processing, as well
as how insulted pelvic organs may sensitize
each other. This study will provide insights on
the development of IC and other chronic
pelvic pain conditions that often coexist with
IC, such as irritable bowel syndrome.
—Sonia Planey, PhD
DoD PRMRP Awardee Dr. Sonia Planey with ICA’s Anita Roach.
A4
Matching Funds to Find a Cure
750,000 DoD Research Grant to Develop Diagnostic Test for IC
ICA Pilot Research
Program Expanded
ICA also worked with an anonymous donor
ICA’s advocacy efforts resulted in a $750,000
To increase the amount it dedicates to
to support IC research. Individual donations
research grant through the Department of
supporting worthwhile research, ICA revised
of up to $10,000 for the ICA Pilot Research
Defense Peer Reviewed Medical Research
the eligibility criteria, application process,
will be matched by the anonymous donor.
Program that was awarded to Sonia Planey,
and increased the award amount of the ICA
By the end of fiscal 2013, more than $14,000
PhD, of Commonwealth Medical College in
Pilot Research Program from $10,000 to
had been raised through the program, which
Pennsylvania to develop a potentially
$25,000 to help spur new investigators and
has continued to grow in fiscal 2014.
definitive diagnostic test for IC. Dr. Planey’s
novel projects. To date, more than 100 IC
research on the use of antiproliferative factor
research projects have been funded by the
(APF), a glycopeptide discovered by Dr.
ICA Pilot Research Program.
$
to offer a $50,000 matching-grant program
Partnering for Progress
ICA has also established joint research
Susan Keay, as a diagnostic biomarker for
IC, could possibly speed a patient’s time
One project funded in 2013 is The Comorbid
awards with the American to diagnosis and to earlier, possibly more
Pelvic Pain Modeled by Homo- and Hetero-
Urogynecologic Society and Association effective, treatment.
sensitization of Pelvic Viscera: the Potential
of Nurse Practitioners Foundation.
I C A’s E LE C T RO N I C E N G AG E M E N T, BY T H E N U M B E R S
T
he ICA’s use of the Internet and
social media to spread public
awareness and reach out to often-isolated IC
patients continued to grow in 2013, including:
n 59 email blasts to an average of 28,500 recipients — a 6% increase from the previous year, and
with a 15 percent “open rate”—significantly above the industry standard for email campaigns
n 318 Facebook posts, a 192% increase from the previous year, resulted in a 20% increase in
new likes, a 74% increase in engaged users, and nearly 1.2 million in total reach, representing
a 123% increase in 2013.
n 417,000 individuals visited the ICA website, a 36% increase from the previous year, resulting in
1.9 million page views—a 12% increase from the previous year.
EDUC AT ION
O
the IC community, and exchanged
content with other organizations, including
the Sjögren’s Foundation.
ur goal is to arm patients, healthcare providers, caregivers, researchers, and the
general public with objective and current information.
Broadening Visibility
ICA launched a national billboard campaign
Patient Education Forum: Knowledge, Hope, and Empowerment
In June, ICA held its 2013 Patient Forum:
Empowering IC Patients With Knowledge and
Hope in Philadelphia. The free event brought
together over 125 patients, caregivers, family
“
in which more than 1,000 billboards sharing
This CME will help educate healthcare
providers on the signs and symptoms
of IC so they can confidently recognize
and treat IC patients.
information about IC were placed in more than
— Jeffrey Proctor, MD,
ICA Medical Advisory Board member
IC and directing them to get the facts at ICA’s
”
members, healthcare providers, IC researchers,
40 markets across the country, including 100
Spanish-language billboards in Los Angeles.
Providing the public with information about
website, ichelp.org, the campaign was supported
by social media and resulted in a 6.3 percent
pharmaceutical representatives, and others
help healthcare professionals more readily
increase in total visits to ichelp.org, a 4.5
with an interest in IC. All were united by the
recognize the signs and symptoms of IC.
percent increase in new visitors, and
mission of empowering patients and caregivers
increases in visit length and depth. Facebook
with the need-to-know tools for successful
followers rose by 228 percent, iTunes downloads
management and treatment of the condition.
New Resources for IC Patients
increased 676 percent, and views of ICA’s
ICA launched its free patient self-management
YouTube videos increased by 966 percent.
To broaden and maximize the impact of the
module, ICHope. Developed in connection
event and make it accessible to all, the
with Pro-Change, ICHope (ichelp.org/ichope)
Patient Forum was streamed live on the day
is the first-of-its-kind computer-tailored
of the event, recorded, and made into a series
intervention for patients experiencing IC pain.
of webcasts that will be accessible online for
Focused on self-management, ICHope provides
one year. The recorded webcasts have been
patients with the tools they need to regain
viewed by more than 700 individuals. The
control of their lives, including finding a
average rating for the sessions was 4.2 out
committed healthcare provider, identifying
of 5, and 96 percent of all participants said
self-care strategies, and using healthy methods
ICA also ran IC awareness advertising in USA
they would recommend the Patient Forum to
to stay hopeful and empowered.
Today’s Charity Spotlight for six months of
other IC patients and caregivers.
A5
One of more
than 1,000
IC billboards
across the
country.
the year and disseminated information about
ICA also launched the online ICA Healthcare
IC by participating in a range of meetings,
Provider Registry, which includes more than
including the New York State Pain Society
Continued Education for the Healthcare Community
1,000 healthcare providers, including
and the US Pain Foundation’s Patient Summit,
physicians, nurse practitioners, physical
the Alliance for Pelvic Pain’s Patient Retreat,
In conjunction with The France Foundation,
therapists, dietitians, and counselors. Available
the American Urologic Association Annual
the American Urogynecologic Society, and
at www.ichelp.org/HealthcareProviderRegistry,
Meeting, the International Pelvic Pain
Nurse Practitioner Alternatives, ICA launched
the registry is free for patients and clinicians.
Society Annual Meeting, and the American
ICHelpCME.org, an online continuing
Urogynecologic Society Annual Meeting.
medical education resource center for
ICA’s free webinar, IC’s Role in CAPPS
healthcare providers on the identification and
(Complex Abdominal-Pelvic Pain Syndrome),
The 2013 Patient Forum, ICHelpCME.org,
management of patients with IC. Conquering
drew 275 live views and 668 recorded views
ICHope, the ICA Healthcare Provider Registry,
IC: Identification and Management Strategies,
through the year. ICA also continues to produce
and the national billboard campaign were
is a free continuing medical education
and distribute ICA Update, the association’s
supported by the Cooperative Agreement
(CME/CE) module focused on the identification
signature publication providing credible
5U58DP002936-03 from the Centers for
and management of IC patients in order to
and relevant resources and information to
Disease Control and Prevention.
D
uring 2013, ICA continued to maintain the call to be a good steward of donations
by directing as much money as possible to the programs and services vital in
the support of education and research for IC. The following is a summary of the financial
statements incorporated in the annual audit report issued by Rogers & Company PLLC
for the year ended September 30, 2013. The complete financial statements and notes are
available to view in the About Us section of ICA’s website, www.ichelp.org.
Making the most of LIMITED DOLLARS
to FIGHT IC
E XPEN SES:
STATEMENT OF ACT IVIT IES
For the Year Ended September 30, 2013
Fundraising and Administration
178,129
$
REVENUE:
Federal Grant $ 563,918
Contributions $ 543,831
In-Kind Contributions $ 300,000
Publication Sales $
12,633
$
Total Revenue
1,419,393
12%
88%
A6
6
Programs and Services
$
1,286,131
REVENUE:
SUPPORTING SERVICES:
Administration $
Fundraising $
Total Supporting Services
$
Federal Grant – 562,918
$
Contributions – $543,831
Total Expenses
Change in Net Assets from Operations
Investment Loss
Change in Net Assets
Net Assets, beginning of year
Net Assets, end of year
In-Kind Contributions – $300,000
Publication Sales – $12,633
Total Revenue – $1,419,393
0
300,000
$
600,000
$
E XPEN SES:
Program Services
CDC Cooperative Agreement $ 485,130
Research $ 80,060
Advocacy $ 157,012
Education $ 563,929
Total Program Services
$ 1,286,131
900,000
$
$
1,200,000
$
1,500,000
Interstitial Cystitis Association
1760 Old Meadow Road, Suite 500 | McLean, VA 22102 | www.ichelp.org
100,913
77,216
178,219
$ 1,464,260
($ 44,876)
($
4,802)
$
( 49,669)
$ 870,692
$ 821,023
From hyperbaric oxygen and allergy treatments to
dietary supplements and acupuncture, unconventional
options offer hope for IC patients.
— By Emma Nichols
For most patients, the path to interstitial cystitis
treatment and relief from symptoms is arduous
and fraught with dead ends. So far, no
treatment reliably eliminates the symptoms
associated with IC. Pentosan polysulfate
sodium (Elmiron), the only drug that has
been approved specifically for IC, only
works in some people and may take
several months before it starts
relieving pain. Some treatments not
specifically approved for IC, such as
antidepressants, antihistamines, and
ibuprofen, may be helpful—but in many
cases, they may also fail to produce results.
New Alternatives for
IC TREATMENT
Small wonder, then, that
interest in alternative
approaches to the treatment
of IC is strong. In an ICA
survey of about 2,000
respondents with IC, more
than 80 percent said they
had used complementary
and alternative medicines,
including dietary management, physical therapy,
meditation and relaxation, acupuncture, stress reduction,
exercise, and sleep hygiene.
For those seeking additional options, a solution may lie in a wide range of
alternative treatments now being evaluated, including allergy treatments, dietary
supplements, acupuncture, and hyperbaric oxygen. Just as it’s still unclear what causes IC,
it’s largely unclear what approach—or approaches—might relieve its symptoms for each patient.
“IC is a condition that nobody understands well,” observes Ragi Doggweiler, MD, with the University
of Tennessee Graduate School of Medicine in Knoxville. “I explain to my patients that everybody is different.”
Allergy Treatments
“Some swear that figuring out the trigger foods has made the
difference. They feel like a completely new person.”
John Hubbard, MD, urologist at The Hubbard Clinic, lives in
Louisville, Kentucky, one of the nation’s allergy capitals. There,
he says, some patients have found that taking allergy medications
can help relieve IC symptoms.
Dietary Supplements
“We have some of the highest pollen counts in the nation and
lots of allergies,” he says. “I noticed the correlation in IC flares
and high pollen counts.”
Dr. Hubbard, together with allergist C. Steven Smith, MD,
took a closer look at the allergy connection. Mast cells play a
role in allergies, and the mast cell count is elevated in IC as
well. The physicians found that while mid-range numbers of
mast cells do not necessarily correlate with IC severity, high
numbers do. According to Dr. Hubbard, in extreme cases, an
unusually high number of mast cells in an IC patient indicates
that the person needs the attention of an allergist.
Dietary triggers for IC can be the result of food allergies. When
Dr. Smith evaluates an IC patient, he first asks about allergy
symptoms, then he looks for allergic reactions to food by
performing skin prick tests. A positive skin prick result, followed
by an elimination diet and reintroduction of suspect foods one
at a time, can point to the foods that cause IC flares. Once
these are removed from the diet, for many people, the response
is dramatic.
16
“After seeing over 400 patients referred by local nurse
practitioners, urologists, gynecologists, and primary care
physicians,” Dr. Smith says, “I am convinced there is an atopic
(i.e., allergy-related) factor contributing to IC and bladder pain
syndrome in some patients.”
Working with Dr. Smith, Holly Reed, RN, BSN, observed
that patients who tested positive for allergies and successfully
eliminated the allergens found that their symptoms improved
by about 75 percent.
“
If patients can pinpoint a problem food and cut it
out, then they don’t have to take medication. Some swear
that figuring out the trigger foods has made the
difference. They feel like a completely new person.
”
Emmy Baker, a nurse practitioner with The Hubbard Clinic,
concurs. “If patients can pinpoint a problem food and cut it
out, then they don’t have to take medication,” she says.
The addition of supplements to the diet may also be helpful,
but the challenge is finding what works for each individual.
Anecdotal evidence for effective supplements is varied and
widespread. “There’s a lot that works for some people, but
there’s also a lot that won’t work for everyone,” Dr. Hubbard
points out.
Amid the flux of patients in the clinic, Baker tries to keep tabs
on what seems to work, even if only for a fraction of patients.
Remedies that have been effective include CystoProtek, a
dietary supplement containing flavonoids, chondroitin, and
other compounds; aloe; marshmallow root; alkalizing drops;
baking soda dissolved in drinking water as well as in a warm
bath; and Prelief, a supplement that eliminates acid content
from food.
Medications
Diet and supplements work well over the long term, but in the
short term, for intense discomfort during an IC flare, fastacting medicines are important, Baker says. For painful muscle
spasms, Baker stumbled upon an “old-school” antispasmodic
often used for irritable bowel syndrome called Levsin
(hyoscyamine). “It works really quickly,” she says. “People have
great luck with that for urgency and frequency, and for bladder
spasms that can truly cause pain.”
Medications compounded as topical agents are also helpful.
These include vaginal diazepam (Valium) suppositories and a
topical cream consisting of amitriptyline, gabapentin, bacitracin,
and lidocaine. “These are huge life-savers to people because they
target the nerve irritation directly, and they are not systemic,
so people feel alert,” she adds.
Acupuncture
Acupuncture has become another option for IC patients.
According to Dr. Geo Espinoza, founder of the Integrative
Urology Center at New York University Langone Medical
Center, the scientific data regarding acupuncture treatment for
IC is limited. He cites in his blog a few small studies that show
a modest benefit from the approach. One study conducted in
Norway included 67 adult women with a history of recurrent
lower urinary tract infection who were randomized into three
groups: acupuncture treatment, sham acupuncture, and no
treatment. Of the patients in the acupuncture group, 85
percent were free of cystitis during the six-month study
period, as compared with 58 percent in the sham group and 36
percent in the control group.
Other studies have shown a small benefit in a few patients,
however, “good randomized trials with the use of acupuncture
are desperately needed for this patient population,” Dr.
Espinoza notes.
Baker says that she has seen acupuncture be effective. “I had a
patient who needed weekly instillations for serious pain until
she started acupuncture,” she says. “Then she was practically
flare free and didn’t need instillations anymore.”
Hyperbaric Oxygen Treatment
The delivery of concentrated oxygen to body tissue has also
shown to be of some benefit in patients with symptoms similar
to IC, with few side effects. Patients who have undergone
radiation treatment in the pelvic region experience pain and
inflammation familiar to patients with IC. Patients with this
radiation-induced cystitis have shown remarkable improvement
with hyperbaric oxygen treatment, leading investigators to look
for a similar benefit in patients with IC.
Arndt van Ophoven, MD, from the Department of Urology
at Universitätsklinikum in Münster, Germany, and colleagues
evaluated hyperbaric oxygen treatment in IC patients. After
30 sessions of breathing 100 percent oxygen in a pressurized
chamber for 90 minutes, six times per week for five weeks, 21
percent of the 14 people responded well, and their responses
lasted through a 12-month follow-up period, according to a
study published in European Urology.
Dr. van Ophoven noted an “all-or-none” response to the
treatment. Patients who did not respond initially saw no
response for the entire 12-month follow-up period, and those
who responded well initially experienced benefits for all 12
months. One person reported excellent satisfaction with the
outcome throughout the 12-month period. However, as is
the case with many IC treatment approaches, it is difficult to
predict who will benefit from the use of hyperbaric oxygen.
Treating Pain at the Source
For Robert Moldwin, MD, at the Smith Institute for Urology
in New York, the big problem in studying and treating IC is
the variation in the disorder. “We want to relieve the pain right
away but need to know the source,” he says. “Before we work
on bladder conditions, we must first identify the pain generator.
A significant amount of pain can arise from pelvic floor
dysfunction, not the bladder. When a therapy is not working,
it’s probably not targeting the pain generator.”
Research shows that over 85 percent of IC patients have pelvic
floor dysfunction. Dr. Moldwin adds that he sees profound
improvements when pelvic floor dysfunction is addressed by
referring patients to a physical therapist and, at times, prescribing
muscle relaxants.
Many practitioners see value in physical therapy. “Patients
should have a very good relationship with their physical
therapist, someone who is trained in chronic pelvic pain,”
Dr. Doggweiler suggests. “Another option is yoga, which is
wonderful for pelvic pain, in general, although it’s not the
tool for everybody.”
Treatments Direct to the Bladder
When it’s clear that the bladder is indeed causing pain,
treatment can be delivered straight to the source. “The idea
is to place agents directly into the bladder to avoid systemic
problems,” Dr. Moldwin explains. “We aim for the most
minimal approach at every stage.”
Michael Cima, professor of engineering at the Massachusetts
Institute of Technology and co-founder of TARIS Biomedical,
points out that intravesical treatments limit drug exposure
primarily to the bladder. “They undoubtedly benefit patients,
but the drawback is they don’t last long,” he says.
Dr. Cima and colleagues developed the LiRIS (lidocainereleasing intravesical system), a lightweight, pretzel-shaped
device that continuously delivers anesthetic into the bladder
for two weeks, then is removed. “Our studies show symptom
benefit over a two-week period,” Dr. Cima says. “Surprisingly,
we also observed benefit extending after the two-week course
of therapy.” The possibility that LiRIS will have longer-lasting
benefits is being studied.
Michael Chancellor, MD, with Oakland University William
Beaumont School of Medicine in Rochester, Minnesota, has
developed a new intravesical treatment involving liposomes.
Liposomes are tiny bubbles made from the same material as
the bladder cell wall. “When instilled, liposomes adhere to
the bladder lining without being washed out by the urine, and
they coat and protect the bladder. It’s like putting lipid-based
sun block on skin that doesn’t wash off in a pool,” says Dr.
Chancellor, who is working with Lipella Pharmaceuticals Inc.
Early trials of liposome instillations are promising, with patients
showing significant improvements in pain and urgency for up
to four weeks.
17
Severe IC is characterized by areas of inflammation on the
bladder wall called Hunner’s lesions, which may benefit
significantly from new intravesical treatments. The ulcers are
often removed by laser, which can cause scarring. According
to Dr. Moldwin, scar tissue can tether the bladder and restrict
expansion, exacerbating symptoms. A new treatment injects
steroids directly into the inflamed bladder wall. “Preliminarily
we see patients do quite well, and the results are relatively
comparable to laser removal,” he says. “It’s a more minimal
approach that may avoid further scar tissue.”
Along similar lines, Dr. Cima noted an improvement in
Hunner’s lesions in the initial LiRIS trial. “We observed
resolution of Hunner’s lesions during the course of therapy,”
he says. “To our knowledge, that has not been observed
before and is being studied further.”
Treatment of bladder pain with botulinum toxin has been
another promising route for some patients. “Botulinum toxin
is a very well-tolerated anesthetic for muscle spasms and pain,”
Dr. Moldwin says. “There is very good data that it benefits
many patients. There is less chance of urinary retention, and
less risk of adverse side effects.”
Chancellor has tested liposomal delivery of botulinum toxin
with patients with overactive bladder syndrome (OAB),
although not specifically with IC patients. “Our preclinical
OAB results included frequency reduction,” he says. The results
will be presented at the American Urological Association
Annual meeting this year.
18
“
The Hubbard Clinic also has experience with using botulinum
toxin for IC. Baker describes two patients who were averaging
30 to 40 voids per day who dropped down to 8 to 10 per day,
with significant reductions in pain. Although the effects
lasted only about three months, ”to reduce their frequency by
so much, it’s worth it,” Baker says.
Holistic medicine often plays a central role in
treatment. The holistic, integrative approach to medicine
considers the whole person—body, mind, spirit, and
emotions—in striving for wellness.
Integrative Medicine
”
Since more than 80 percent of IC patients experience
accompanying conditions that include fibromyalgia, sleep
disorders, chronic fatigue, Sjögren’s Syndrome, migraine
headaches, irritable bowel syndrome (IBS), vulvodynia, and
gluten intolerance, among others, many aspects of a
person’s life become disrupted. For this reason, holistic
medicine often plays a central role in treatment. The
holistic, integrative approach to medicine considers the
whole person—body, mind, spirit, and emotions—in
striving for wellness.
Dr. Doggweiler turned to integrative medicine when she saw
that traditional approaches were often ineffective. “Patients
took many medications and had many surgeries and really
weren’t feeling better,” she says. “That made me wonder what
else could be done to help these patients.”
Instead of asking only about bladder pain, urgency, and
frequency, Dr. Doggweiler talked with patients about their
lives and potential triggering factors. In her Mind/Body
Skills Group, she teaches tools for handling stress and
other factors that cause IC flares. Topics include breathing
techniques, biofeedback, guided imagery, music, dance,
journaling, and drawing.
Dr. Doggweiler observes that when patients become
aware of triggers and have effective tools to address them,
it helps them feel empowered. “When patients feel
empowered to do something about their condition, they
do better,” she says.
The Role of the Healthcare Provider
Those who have navigated their way from IC misery to a
manageable condition have relied on receptive and
knowledgeable healthcare providers. For those seeking help,
Dr. Doggweiler suggests finding someone who is willing to
listen first. “This is not just a 10-minute visit, but probably a
half-hour to hour visit,” she says. “Enough time to get the
whole story.”
Dr. Hubbard says, “The first thing I tell a patient who I think
has IC is that they have a physical medical problem, which
can be chronic. We’ll establish a treatment plan, and if they
follow it, life will get much better.”
“It’s a tough thing to treat, but we do a lot of it,” says Baker.
“People end up in our office just miserable, having been to a
lot of places and feeling like they’re crazy.” With the help of
doctors, nurses, physical therapists and support groups, many
patients, after trying many options, have found a path to longterm remission. Actively searching for a solution, whatever
that may be, seems to be the key.
Emma Nichols is an Atlanta-based medical writer.
Doctor’s Forum
Beyond the
Front Lines
When initial treatments don’t work,
physicians can help IC patients explore a
wide range of options.
—Robert J. Evans, MD
IC patients have a broad range of options to consider when
facing the condition for the first time—diet and other self-care
techniques, physical therapy, medication, bladder instillations,
cystoscopies, and the treatment of Hunner’s ulcers. When these
first-line treatments don’t provide relief, IC patients must begin
considering more complex and invasive treatments to
manage their condition. Robert J. Evans, MD, associate
professor of urology with Wake Forest University, spoke with
ICA Update about his approach to helping patients evaluate
treatment options, how patients decide between botulinum
toxin A (better known as Botox) injections into the bladder
and neuromodulation, and what happens when even those
treatments don’t yield desired results.
Q:How do you encourage patients to think about their treatment options?
The way the AUA guidelines are set up, they don’t say you
have to go 1-2-3-4. They’re set up in terms of the invasiveness
and potential complications.
I tend to go through the whole guidelines the first time I see
patients. I say, “Here are all the available tricks that we’ve got.
We can also add physical therapy and pain management. So
let’s look together and see what is the thing that bothers you
the most and what we can do about it.”
19
control of the disease in their hands. They have the ability to
give themselves treatment at all times—they can handle flares.
We think that’s something every patient needs to know how
to do and should be able to do.
We offer patients a low-friction catheter or something that’s
really simple to use. If they need to use lidocane jelly, they
can do that. If they’re inclined to get infections, we can make
sure they can give themselves antibiotics as needed.
Still, there are some people who want to skip over that and go
directly to Botox or neuromodulation.
Q:What are some baseline things you’d urge patients to
consider before proceeding with more complex treatments?
Q:How do you evaluate those patients for these treatments?
We offer home instillation therapy to pretty much anyone who
doesn’t respond to oral therapy. We think it puts a lot of the
We’ve got to make sure they’ve got a voiding problem, and not
just pain. There needs to be urgency and frequency, urgency
and incontinence, fecal incontinence, or retention. The group
we won’t do are the people who say they don’t have any
frequency, any urgency—they just have pelvic pain. The
treatments are just not indicated for it, and these are the
things we’re being held to.
Any pain decrease is gravy. That can’t be the primary thing
we’re looking at based on what this has been approved for.
Then we’ll encourage people to consider having one, two,
or three instillations in the office. I’m interested in finding
out if they can relax enough to put an instillation in, and
I like to use the anesthetic cocktail (sodium bicarbonate,
heparin, lidocaine) to help find the real location of their
pain. A patient who has pain primarily from IC should have
some resolution of their pain from this treatment. If they
don’t think they have any difference in their pain, there may
be a pelvic floor component.
To me, it depends tremendously on what the patient’s numberone fear is. For the folks who say their fear is that they don’t
want cutting, they pick Botox. The folks who shy away from
Botox are the ones who fear catheterization.
Catheterization is critical with Botox. If we give someone
Botox, we make sure people can catheterize, because it puts
you at risk of retention. With Interstim, if you can’t urinate,
you just turn the box off.
“
If we give someone Botox, we make
sure people can catheterize, because it
puts you at risk of retention.
”
Q:When patients decide to do Botox, what are their options?
Q:What do you do when you suspect there’s a pelvic floor
component to a patient’s condition?
20
In that case, there’s physical therapy, valium suppositories,
trigger point injections right into the muscle—a wide range
of things that target that area. I start with injections of
bupivacaine (Marcaine) and a steroid. In a completely off-label
way, you can also do a Botox injection to the pelvic floor
muscle, and that can decrease pain and voiding.
Q:When would you consider a Botox injection into pelvic muscles?
It’s a very complex patient population. There are people who
seem to have true pelvic floor dysfunction—going in and out
of retention—and physical therapy and muscle relaxants and
valium suppositories don’t work. For people who have this
truly severe pelvic floor dysfunction, Botox is an option.
You do have to warn them that you are injecting the pelvic
muscles—we haven’t seen side effects, but they could last for
six months.
Q:If it’s not a pelvic floor issue and patients do want to
proceed with the next lines of treatment, how do they
choose between Botox and neuromodulation?
It’s not that we do Botox first and neruomodulation second.
We look at these being equal options and let them decide. But
one does not preclude the other.
I give patients two options. One, you can do it in the operating
room. The folks who pick that are the ones who also want to
have a hydrodistention done, and may have had a good
response to that previously. Increasingly now, we’re doing the
bulk of them in the office. It’s fully FDA-approved now as
long as you have the indications we described. I use a flexible
scope—you don’t need a big scope.
You start with 100 units in 10 injection sites. But one thing I
think is a little different is that I tend to include the trigone
(the base of the bladder) among the injection sites, while the
original protocol tried to stay away from it. The theory was
that if you injected close to the bladder neck, you might have
some leakage. That’s never happened. There are more nerve
endings down there, so we think there’s benefit down at the
bladder base to decreasing pain.
Again, these patients have to catheterize because there’s a risk
of retention. If you do 100 units, I don’t think there’s much
of a chance. Going up to 200 units doesn’t seem to work any
better, but the risk of retention is really high.
Q:How do you measure success?
We’re going to base the response solely on whether it decreases
frequency and urgency. If we’re going to justify getting another
injection on their insurance, that’s the thing we’re being held
to. We’re going to want to see about a 50 percent drop in the
frequency—if someone’s getting up three or four times a night,
it should cut it down to one or two times. The voided volume
should double—if you’re voiding 100 ccs, it should be 200.
That works best for people who have some time on their
hands and who live reasonably close to the office. Some studies
suggest that it might be as good as InterStim, but we don’t
have enough people to (demonstrate this).
Q: What about neuromodulation?
With InterStim, one of the things that’s helpful is that you
don’t have to have it implanted until you know you like it. You
can implant a temporary wire, but for this population, the
conversation rate is higher with a staged implant. We can route
(the permanent wire) outside to the lead extender so you can
test the device for up to two weeks. In the office, we do a
peripheral nerve evaluation. We tell patients if you really dislike
this, you can turn the box off. You can even pull the wire
out yourself. It’s a very simple way to determine if it makes a
difference for you.
I tell patients that the worst that can happen if you dislike it
is that I’ll pull (the wire) out and leave you with a little hole
that can be covered up by a bandage.
“
This should not be a subtle change,
but a real significant difference
in your life—you should be able to
sit through church or a movie without
having to go to the bathroom.
Q:And how do you measure success?
”
Again, we don’t want to implant anybody who doesn’t see a
50 percent drop in symptoms. This should not be a subtle
change, but a real significant difference in your life—you
should be able to sit through church or a movie without having
to go to the bathroom.
Q:What other neuromodulation options exist beyond InterStim?
InterStim is the best-known option, but percutaneous tibial
nerve stimulation (PTNS) is another way of doing this in a
non-invasive way. With PTNS, you place a needle into the
third sacral nerve where it goes into your ankle, where it gets
electrical stimulation for a 30-minute treatment. It requires
weekly treatments for three months and monthly treatments
for at least a year. It builds up over time and can reduce
frequency and urgency.
Q:These treatments aren’t specifically indicated for pain,
although you believe they often help. How do you advise
patients to deal with pain management issues?
By this point, most patients are already on a pain management
program with a pain clinic. We encourage them to work with
a pain management clinic, where possible, if they need heavyduty narcotics.
It’s become a controversial subject, and the medical climate is
changing. Several years ago, we were encouraged to actively
and aggressively treat patients with non-malignant diseases
like this one. Now, the pendulum is swinging the other way.
It’s really ideal for patients to have a pain clinic to help manage
their medications.
Q: When these treatments aren’t successful, the next line of
treatment recommended in the guidelines involves the
immunosuppressant cyclosporine. How do you discuss this
with patients?
It’s an option for someone who’s run out of options and is
considering a surgical intervention. The data is modest,
especially in the U.S. It’s also an off-label treatment, as
cyclosporine is approved only for patients with transplants.
But it’s a compelling story. If we think there’s a chance that
this disease is autoimmune in nature, then it makes sense that
modifying the immune system is a reasonable option. It’s
only been out there for a few years, but people do get a really
good response.
The patients that seem to do best with this are the patients with
Hunner’s ulcers, the more serious disease. The thinking is that
those patients are a little different from other IC patients.
But we would offer it to anybody. But the caveat suggesting
that this should only be administered by urologists with a lot
of experience with IC is true. You’re manipulating someone’s
immune system, and you don’t want them to do that lightly.
Q: What’s the typical course of treatment?
The trend is to dose as low as 2mg, for no longer than six
21
months. Some patients are really reluctant to give it up. But
when you modify the immune system, you run into the risk
of malignancies, so weaning off at six months seems prudent.
clinical trial that we have the serious talk about the pros and
cons of doing something surgical.
Q: What patients should consider clinical trials?
Q:With cyclosporine treatment, patients need to be tested
regularly for a variety of issues, including blood pressure and
liver function. What do you focus on?
I check labs before treatment, at one month, and at three
months. I look at the cyclosporine levels—they tend to come
in a little low; patients don’t have levels as high as in a heart or
kidney transplant. The fact that the levels stay low reassures
me from a safety perspective.
Q: Surgery is the last resort for IC patients. When do you
consider it?
I don’t even like people thinking about the surgical options.
You want to look at all the options available outside the
arena. It’s only after they run the entire list and consider a
I do tend to discourage people from jumping into a clinical
trial if they’ve got other options. There are certain screening
criteria that they’ve got to meet—they have to have a pain
diary and a void diary that fits. But my thinking is anyone
who is thinking about instillations or Botox or InterStim
could think about trying a trial. They don’t have to try all the
other options first.
The thing patients worry the most about is that they’re going
to be abandoned or that someone will throw their hands up
and say there’s nothing they can do. I want to show them we
have a lot of tricks, and that we’ve always got something
different we can try to modify their condition. The more
options they know about, the better.
Mark Toner is editor of ICA Update.
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Conquering IC. Changing Lives.

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