Interstitial Cystitis/
Painful Bladder Syndrome
National Kidney and Urologic Diseases Information Clearinghouse
What is Ie/PBS?
U.S. Department
of Health and
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Interstitial cystitis (IC) is a condition that
results in recurring discomfort or pain in
the bladder and the surrounding pelvic
region. The symptoms vary from case to
case and even in the same individual. People
may experience mild discomfort, pressure,
tenderness, or intense pain in the bladder
and pelvic area. Symptoms may include an
urgent need to urinate, a frequent need to
urinate, or a combination of these symptoms.
Pain may change in intensity as the bladder
fills with urine or as it empties. Women's
symptoms often get worse during menstrua­
tion. They may sometimes experience pain
during vaginal intercourse.
Kidney
Urethra
Because IC varies so much in symptoms and
severity, most researchers believe it is not
one, but several diseases. In recent years,
scientists have started to use the terms blad­
der pain syndrome (BPS) or painful bladder
syndrome (PBS) to describe cases with pain­
ful urinary symptoms that may not meet the
strictest definition of Ie. The term IC/PBS
includes all cases of urinary pain that can't be
attributed to other causes, such as infection
or urinary stones. The term interstitial cysti­
tis, or IC, is used alone when describing cases
that meet all of the IC criteria established by
the National Institute of Diabetes and Diges­
tive and Kidney Diseases (NIDDK).
In IC/PBS, the bladder wall may be irritated and
become scarred or stiff. Glomerulations­
pinpoint bleeding-often appear on the
bladder wall. Hunner's ulcers-patches of
broken skin found on the bladder wall-are
present in 10 percent of people with Ie.
The urinary system
Some people with IC/PBS find that their
bladder cannot hold much urine, which
increases the frequency of urination. Fre­
quency, however, is not always specifically
related to bladder size; many people with
severe frequency have normal bladder capac­
ity when measured under anesthesia or dur­
ing urologic testing. People with severe cases
of IC/PBS may urinate as many as 60 times a
day, including frequent nighttime urination,
also called nocturia.
lC/PBS is more common in women than in
men. An estimated 3.3 million U.S. women,
or 2.7 percent, who are 18 years of age or
older have pelvic pain and other symptoms,
such as urinary urgency or frequency, that
are associated with lC/PBS.\ An estimated
1.6 million U.S. men, or 1.3 percent, who
are 30 to 79 years old have persistent symp­
toms, such as pain with bladder f111ing or pain
relieved by bladder emptying, that are associ­
ated with PBS.2
What causes IC/PBS?
Some of the symptoms of IC/PBS resemble
those of bacterial infection, but medical tests
reveal no organisms in the urine of people
with IC/PBS. Furthermore, people with
lC/PBS do not respond to antibiotic therapy.
Researchers are working to understand
the causes of IC/PBS and to find effective
treatments.
Many women with IC/PBS have other condi­
tions such as irritable bowel syndrome and
fibromyalgia. Scientists believe IC/PBS may
be a bladder manifestation of a more general
condition that causes inflammation in vari­
ous organs and parts of the body.
How is IC/PBS diagnosed?
Because symptoms are similar to those of
other disorders of the bladder and there is
no definitive test to identify IC/PBS, doc­
tors must rule out other treatable conditions
before considering a diagnosis of IC/PBS.
The most common of these diseases in both
sexes are urinary tract infections and bladder
cancer. In men, common diseases include
chronic prostatitis or chronic pelvic pain
syndrome. In women, endometriosis is a
common cause of pelvic pain. lC/PBS is not
associated with any increased risk of devel­
oping cancer.
The diagnosis of IC/PBS in the general popu­
lation is based on the
• presence of pain related to the bladder,
usually accompanied by frequency and
urgency of urination
• absence of other diseases that could
cause the symptoms
Diagnostic tests that help rule out other
diseases include urinalysis, urine culture,
cystoscopy, biopsy of the bladder wall and
urethra, and distention of the bladder under
anesthesia.
Researchers are beginning to explore the
possibility that heredity may playa part in
some forms of IC In a few cases, IC has
affected a mother and a daughter or two
sisters, but it does not commonly run in
families.
lBerry SH, Elliot! MN, Sut!orp M, et aJ. Prevalence of
symptoms of bladder pain syndromelinterstitial cystitis
among adult females in the United States. foumalof
Urology. 2011: 186:540-544
2Link CL, PuHiam SJ, Hanno PM, et al. Prevalence
and psychosocial correlates of symptoms suggestive
of painful bladder syndrome: results from the Boslon
area community hea.lth survey. fOtlmal of Urology.
2008; 180:599-606.
2
Interstitial Cystitis/Painful Bladder Syndrome
Urinalysis and Urine Culture
Examining urine with a microscope and
culturing the urine can detect and identify
the primary organisms that are known to
infect the urinary tract and that may cause
symptoms similar to IC/PBS. A urine sample
is obtained either by catheterization or by
the clean catch method. For a clean catch,
the patient washes the genital area before
collecting urine midstream in a sterile con­
tainer. White and red blood cells and bacte­
ria in the urine may indicate an infection of
the urinary tract, which can be treated with
an antibiotic. If urine is sterile for weeks or
months while symptoms persist, the doctor
may consider a diagnosis of ICIPBS.
Cystoscopy under Anesthesia
with Bladder Distention
The doctor may perform a cystoscopic
examination in order to rule out bladder
cancer. During cystoscopy, the doctor uses
a cystoscope-an instrument made of a hol­
low tube about the diameter of a drinking
straw with several lenses and a light-to see
inside the bladder and urethra. The doctor
might also distend or stretch the bladder to
its capacity by filling it with a liquid or gas.
Because bladder distention is painful for
people with IC/PBS, they must be given some
form of anesthesia for the proced ure.
Biopsy
Culture of Prostate Secretions
Although not commonly done, in men with­
out a history of culture-documented urinary
tract infections, the doctor might obtain
prostatic fluid and examine it for signs of a
prostate infection, which can then be treated
with antibiotics.
A biopsy is a tissue sample that can be
examined with a microscope. Tissue samples
of the bladder and urethra may be removed
during a cystoscopy. A biopsy helps rule out
bladder cancer.
Light pillar
Telescope lenses
Prism
Rod lenses
Cystoscope
3
Interstitial CystitislPainful Bladder Syndrome
Prism
What are the treatments for
Ie/PBS?
Scientists have not yet found a cure for
IC/PBS, nor can they predict who will
respond best to which treatment. Symptoms
may disappear with a change in diet or treat­
ments or without explanation. Even when
symptoms disappear, they may return after
days, weeks, months, or years. Scientists do
not know why.
Because the causes of ICIPBS are unknown,
current treatments are aimed at relieving
symptoms. Many people are helped for
variable periods by one or a combination
of treatments. As researchers learn more
about IClPBS, the list of potentia] treatments
will change, so patients should discuss their
options with a doctor.
The only drug approved by the U.S. Food
and Drug Administration (FDA) for bladder
instillation is dimethyl sulfoxide (Rimso-50),
also called DMSO. DMSO treatment
involves guiding a narrow tube called a
catheter up the urethra into the bladder.
A measured amount of DMSO is passed
through the catheter into the bladder, where
it is retained for about 15 minutes before
being expelled. Treatments are given every
week or two for 6 to 8 weeks and repeated
as needed. Most people who respond to
DMSO notice improvement 3 or 4 weeks
after the first 6- to 8-week cycle of treat­
ments. Highly motivated patients who are
willing to catheterize themselves may, after
consultation with tbeir doctor, be able to
have DMSO treatments at home. Self­
administration is less expensive and more
convenient than going to the doctor's office.
Bladder Distention
Many people with ICIPBS have noted an
improvement in symptoms after a bladder
distention has been done to diagnose the
condition. In many cases, the procedure is
used as both a diagnostic test and initial ther­
apy. Researchers are not sure why disten­
tion helps, but some believe it may increase
capacity and interfere with pain signals trans­
mitted by nerves in the bladder. Symptoms
may temporarily worsen 4 to 48 hours after
distention, but should return to predistention
levels or improve within 2 to 4 weeks.
Bladder Instillation
During a bladder instillation, also called a
bladder wash or bath, the bladder is filled
with a solution that is held for varying
periods of time, averaging 10 to 15 minutes,
before being emptied.
4
Interstitial CystitislPainful Bladder Syndrome
Doctors think DMSO works in several ways.
Because it passes into the bladder wall, it
may reach tissue more effectively to reduce
inflammation and block pain. It may also
prevent muscle contractions that cause pain,
frequency, and urgency.
A bothersome but relatively insignificant side
effect of DMSO treatments is a garliclike
taste and odor on the breath and skin that
may last up to 7 hours after treatment.
Long-term treatment has caused cataracts
in animal studies, but this side effect has not
appeared in humans. Blood tests, including
a complete blood count and kidney and liver
function tests, should be done about every
6 months.
Oral Drugs
Pentosan Polysulfate Sodium (Elmiron)
This first oral drug developed for IC was
approved by the FDA in 1996. In clinical
trials, the drug improved symptoms in
30 percent of patients treated. Doctors do
not know exactly how the drug works, but
one theory is that it may repair defects that
might have developed in the lining of the
bladder.
The FDA-recommended oral dosage of
Elmiron is 100 milligrams (mg), three times
a day. Patients may not feel relief from IC
pain for the first 4 months. A decrease In
urinary frequency may take up to 6 months.
Patients are urged to continue with therapy
for at least 6 months to give the drug an
adequate chance to relieve symptoms. If
6 months of Elmiron therapy provides no
benefit, it is reasonable to stop the drug.
Elmiron's side effects are limited primarily to
minor gastrointestinal discomfort. A sma.ll
minority of patients experienced some hair
loss, but hair grew back when they stopped
taking the drug. Researchers have found no
negative interactions between Elmiron and
other medications.
Because Elmiron has not been tested in
pregnant women, the manufacturer recom­
mends it not be used during pregnancy,
except in the most severe cases. Because
Elmiron has mild blood-thinning effects,
it should be discontinued prior to planned
surgery.
Other Oral Medications
Aspirin and ibuprofen may be a first line of
defense against mild discomfort. Doctors
may recommend other drugs to relieve pain.
Some people have experienced improvement
in their urinary symptoms by taking tricyclic
antidepressants or antihistamines. A tricyclic
antidepressant called amitriptyline (EJavil)
may help reduce pain, increase bladder
capacity, and decrease frequency and noctu­
ria. Some people may not be able to take It
because it makes them too tired during the
day. In people with severe pain, narcotic
analgesics such as acetaminophen (Tylenol)
with codeine or longer-acting narcotics may
be necessary.
Elmiron may affect liver function, which
should therefore be monitored by the doctor.
5
Interstitial Cystitis/Painful Bladder Syndrome
All drugs-even those sold over the
counter-have side effects. A person should
always consult a doctor before using any drug
for an extended amount of time.
Electrical Nerve Stimulation
Mild electrical pulses can be used to stimu­
late the nerves to the bladder-either
through the skin or with an implanted device.
The method of delivering impulses through
the skin is called transcutaneous electrical
nerve stimulation (TENS). With TENS, mild
electric pulses enter the body for minutes
to hours, two or more times a day either
through wires placed on the lower back or
just above the pubic area-between the
navel and the pubic hair-or through special
devices inserted into the vagina in women or
into the rectum in men. AJthough scientists
do not know exactly how TENS relieves pel­
vic pain, it has been suggested that the elec­
trical pulses may increase blood flow to the
bladder, strengthen pelvic muscles that help
control the bladder, or trigger the release of
substances that block pain.
TENS is relatively inexpensive and allows
people with IC/PBS to take an active part
in treatment. Within some guidelines, the
patient decides when, how long, and at what
intensity TENS will be used. It has been
most helpful in relieving pain and decreasing
frequency in people with Hunner's ulcers.
Smokers do not respond as well as nonsmok­
ers. If TENS is going to help, improvement
is usually apparent in 3 to 4 months.
device, marketed as the Inter-Stim system, to
treat urge incontinence. urgency-frequency
syndrome, and urinary retention in people
for whom other treatments have not worked.
Diet
No scientific evidence links diet to IC/PBS,
but many patients find that alcohol, toma­
toes, spices, chocolate, caffeinated and citrus
beverages, and high-acid foods may contrib­
ute to bladder irritation and inflammation.
Some people also note that their symptoms
worsen after eating or drinking products
containing artificial sweeteners. Eliminating
various items from the diet and reintroduc­
ing them one at a time may determine which,
if any, affect a person's symptoms. However,
maintaining a varied, well-balanced diet is
important.
Smoking
Many people feel smoking makes their symp­
toms worse. How the by-products of tobacco
that are excreted in the urine affect IC/PBS
is unknown. Smoking, however, is a major
cause of bladder cancer. One of the best
things smokers can do for their bladder and
their overall health is to quit.
A person may consider having a device
implanted that delivers regular impulses to
the bladder. A wire is placed next to the tail­
bone and attached to a permanent stimulator
under the skin. The FDA has approved this
6
Interstitial CystitislPainful Bladder Syndrome
Exercise
Many patients feel that gentle stretching
exercises help relieve ICIPBS symptoms.
Bladder Training
Physical Therapy
People who have found adequate relief
from pain may be able to reduce frequency
by using bladder training techniques.
Methods vary, but basically patients decide
to void-empty their bladder-at designated
times and use relaxation techniques and
distractions to keep to the schedule.
Gradually, they try to lengthen the time
between scheduled voids. A diary in which
to record voiding times is helpful in keeping
track of progress.
New evidence indicates that certain types of
physical therapy, when administered by an
experienced physical therapist, may improve
IC/PBS symptoms. Patients should discuss
this option with their health care provider.
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Surgery
Surgery should be considered only if all avail­
able treatments have failed and the pain is
disabling. Many approaches and techniques
are used, each of which has advantages and
complications that should be discussed with a
surgeon. A doctor may recommend consult­
ing another surgeon for a second opinion
before taking this step. Most surgeons are
reluctant to operate because some people
still have symptoms after surgery.
People considering surgery should discuss
the potential risks and benefits, side effects,
and long- and short-term complications with
a surgeon, their family, and people who have
already had the procedure. Surgery requires
anesthesia, hospitalization, and weeks or
months of recovery. As the complexity of the
procedure increases, so do the chances for
complications and failure.
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7
Interstitial CystitislPainful Bladder Syndrome
Two procedures-fulguration and resection
of ulcers-can be done with instruments
inserted through the urethra. Fulguration
involves burning Hunner's ulcers with
electricity or a laser. When the area heals,
the dead tissue and the ulcer fall off, leav­
ing new, healthy tissue behind. Resection
involves cutting around and removing the
ulcers. Both treatments are done under
anesthesia and use special instrumen ts
inserted into the bladder through a cysto­
scope. Laser surgery in the urinary tract
should be reserved for people with Hunner's
ulcers and should be done only by doctors
with the special training and expertise
needed to perform the procedure.
Another surgical treatment is augmentation,
which makes the bladder larger. In most of
these procedures, scarred, ulcerated, and
inflamed sections of the patient's bladder are
removed, leaving only the base of the bladder
and healthy tissue. A piece of the patient's
colon-also called large intestine-is then
removed, reshaped, and attached to what
remains of the bladder. After the incisions
heal, the patient may void less frequently.
The effect on pain varies greatly; IClPBS can
sometimes recur on the segment of colon
used to enlarge the bladder.
a second technique that also requires a stoma
bu t allows urine to be stored in a pouch
inside the abdomen. At intervals throughout
the day, the patient puts a catheter into the
stoma and empties the pouch. Patients with
either type of urostomy must be very careful
to keep the area in and around the stoma
clean to prevent infection. Serious potential
complications may include kidney infection
and small bowel obstruction.
Even in carefully selected patients-those
with small, contracted bladders-pain, fre­
quency, and urgency may remain or return
after surgery, and they may have additional
problems with infections in the new blad­
der and difficulty absorbing nutrients from
the shortened colon. Some patients become
incontinent, while others cannot void at all
and must insert a catheter into the urethra to
empty the bladder.
Bladder removal, called a cystectomy, is
another, infrequently used surgical option.
Once the bladder has been removed. dif­
ferent methods can be used to reroute the
urine. In most cases, ureters are attached
to a piece of colon that opens onto the skin
of the abdomen. This procedure is called a
urostomy and the opening is called a stoma.
Urine empties through the stoma into a bag
outside the body. Some urologists are using
8
Interstitial CystitislPainful I3ladder Syndrome
A third method to reroute urine involves
making a new bladder from a piece of the
patient's colon and attaching it to the ure­
thra. After healing, the patient may be
able to empty the newly formed bladder by
voiding at scheduled times or by inserting a
catheter into the urethra. Only a few sur­
geons have the special training and expertise
needed to perform this procedure.
Even after total bladder removal, some
patients still experience variable IC/PBS
symptoms in the form of phantom pain.
Therefore, the decision to undergo a cystec­
tomy should be made only after testing all
alternative methods and seriously consider­
ing the potential outcome.
Removing the bladder is not always done in
patients with severe disease. Some urolo­
gists recommend rerouting urine to a piece
of bowel connected to the abdominal wall.
Urine is then collected in an external bag
that is emptied periodically. While this
procedure mayor may not improve pelvic
pain, it can decrease frequency and improve
quality of life for patients who experience
frequent urges to urinate.
Are there any special
concerns regarding Ie/PBS?
Cancer
No evidence exists that IC/PBS increases the
risk of bladder cancer.
Pregnancy
Researchers have little information about
pregnancy and IC/PBS but believe that the
disorder does not affect fertility or the health
of the fetus. Some women find that their
IC/PBS goes into remission during preg­
nancy, while others experience a worsening
of their symptoms.
Coping
The emotional support of family, friends, and
other people with Ic/PBS is very important
in helping patients cope. Studies have found
that people who learn about the disorder and
become involved in their own care do better
than people who do not. The Interstitial
Cystitis Association maintains a list of support
groups that can viewed at www.ichelp.org.
Hope through Research
Although answers may seem slow in coming,
researchers are working to solve the painful
riddle of IC/PBS. Some scientists receive
funds from the Federal Government to help
support their research, while others receive
support from their employing institution,
drug pharmaceutical or device companies, or
patient support associations.
The NIDDK's investment in scientifically
meritorious IC/PBS research across the
United States has grown considerably since
1987. The Institute now supports research
that looks at various aspects of IC/PBS, such
as how the components of urine may injure
the bladder and what role organisms iden­
tified by nonstandard methods may have
9
Interstitial Cystitis/Painful Bladder Syndrome
in causing IC/PBS. In addition to fundino-b
research, the NIDDK sponsors scientific
workshops where investigators share the
results of their studies and discuss future
areas for investigation.
Clinical Research Network
The Interstitial Cystitis Clinical Research
Network (ICCRN) is a product of two
NIDDK programs: the Interstitial Cystitis
Database (ICDB) Study and the Interstitial
Cystitis Clinical Trials Group (ICCTG).
Established in 1991, the ICDB was as-year
prospective cohort study of more than
600 men and women with symptoms of
urinary urgency, frequency, and pelvic pain.
The study described the longitudinal changes
of urinary symptoms, the impact of IC on
quality of life, treatment patterns, and the
relationship between bladder biopsy find­
ings and patient symptoms. The ICCTG
was established in 1996 as a follow-up to
the ICDB study. The clinical trials group
developed two randomized, controlled
clinical trials of promising therapies, one
using oral therapics-pentosan polysul­
fate sodium (Elm iron) and hydroxyzine
hydrochloride (Atarax)-and the other
administering intravesical treatment using
Bacillus Calmette-Guerin (BCG). BCG is a
vaccine for tuberculosis that stimulates the
immune system and may have an effect on
the bladder. The ICCTG also developed and
conducted ancillary studies of various bio­
markers such as heparin-binding epidermal
growth factor-like growth factor (HB-EGF)
and anti-proliferative factor (APF).
In 2003, the ICCTG became the ICCRN,
which has conducted additional clinical trials
over a second S-year period. One of these
trials studied the effectiveness of amitrip­
tyline in treating PBS, which includes Ie.
Amitriptyline has FDA approval for the
treatment of depression, but researchers
believe the drug may work to block nerve
signals that trigger pain in the bladder and
may also decrease muscle spasms in the
bladder, helping to cut both pain and fre­
quent ulination. The study could not prove
that amitriptyline was effective in treating
IC/PBS, although many patients seemed to
benefit from a combination of amitriptyline
and behavioral modification with stress
reduction.
In 2008, the NIDDK launched the Multidis­
ciplinary Approach to the Study of Chronic
Pelvic Pain (MAPP) Research Network. The
MAPP Research Network is designed to
take a collaborative, whole-body approach to
the study of IC/PBS and chronic prostatitis/
chronic pelvic pain syndrome (CP/CPPS).
This program brings together experts from
non urologic fields such as neurology and
epidemiology as well as traditional urologic
researchers to study IC/PBS and CP/CPPS
in the context of other chronic pain syn­
dromes such as fibromyalgia, chronic fatigue
syndrome, and irritable bowel syndrome.
While traditional research has focused on
the bladder as the source of pain in IC/PBS
and on the prostate as the source of pain
in CP/CPPS, researchers now believe that
an underlying cause common to all chronic
pain syndromes may lie somewhere outside
these specific organs. The MAPP Research
Network includes six. Discovery Sites that will
conduct individual and collaborative trials
and Lwo Core Sites for data and tissue bank­
ing and analysis. The program is scheduled
to be funded for 5 years.
Participants in clinical trials can playa more
active role in their own health care, gain
access to new research treatments before
they are widely available, and help others
by contributing to medical research. For
information about current studies, visit
www.ClinicaITrials.gov.
10
Suggested Reading
The materials listed below may be found
in medical libraries, in many college and
university libraries, through interlibrary loan
in most public libraries, and at bookstores.
Items are listed for information only; inclu­
sion does not imply endorsement by the
National Institutes of Health.
Articles and Book Chapters
Keay SK, Warren Jw. Is interstitial cystitis
an infectious disease? fnternational Journal
ofAntimicrobial Agents. 2002;19(6):480-483.
The Interstitial Cystitis Clinical Trials Group.
A pilot clinical trial of oral pentosan poly­
sulfate and oral hydroxyzine in patients
with interstitial cystitis. .loumal of Urology.
2003;170(3):810-815.
The Interstitial Cystitis Clinical Trials Group.
A randomized controlled trial of intravesical
Bacillus Calmette-Guerin for treatment of
refractory interstitial cystitis. Journal of
Urology. 2005;173(4):1186-J 191.
Hanno P, Lin AT, Nordling J, Nyberg L, van
Ophoven A, Ueda T Bladder pain syn­
drome. In: Abrams P, Cardozo L, Khoury
S, Wein A, eds. Incontinence. Paris: Health
Publication Ltd.; 2009: 1459-1518.
Books and Booklets
Moldwin RM. The Interstitial Cystitis SUivival
Guide: Your Guide to the Latest Treatment
Options and Coping Strategies. Oakland.
CA: New Harbinger Publications, Inc.; 2000.
(Available by calling 1-800-HELP-ICA or
1-800-435-7422.)
Sandler GG, Sandler A. Patient to Patient:
Managing fnterstitial Cystitis & Overlapping
Conditions. New Orleans, LA: Bon Ange
LLC; 2000.
Sant G, ed. Interstitial Cystitis. Philadelphia:
Lippincott-Raven; 1997.
Interstitial Cystitis/Painful Bladder Syndrome
For More Information
American Urological Association Foundation
1000 Corporate Boulevard
Linthicum, MD 21090
Phone: 1-800--828-7866 or 410-689-3700
Fax: 410-689-3998
Email: [email protected]
Internet: www.UrologyHealth.org
American Chronic Pain Association
P.O. Box 850
Rocklin, CA 95677
Phone: 1-800-533-3231
Email: [email protected]
Internet: www.theacpa.org
American Pain Society
4700 West Lake Avenue
Glenview,IL 60025
Phone: 847-375-4715
Email: [email protected]
Internet: www.ampainsoc.org
American Urogynecologic Society
2025 M Street NW, Suite 800
Washington, D.C. 20036
Phone: 202-367-1167
Fax: 202-367-2167
Email: [email protected]
Internet: www.augs.org
International Association for the
Study of Pain
111 Queen Anne Avenue North, Suite 501
Seattle, WA 98109-4955
Phone: 206-283-0311
Email: [email protected]
Internet: www.iasp-pain.org
Interstitial Cystitis Association
100 Park Avenue, Suite 108A
Rockville, MD 20850
Phone: 1-800-HELP-ICA (1-800-435-7422)
or 301-610-5300
Fax: 301-610-5308
Email: [email protected]
Internet: www.ichelp.org
11
National Kidney Foundation
30 East 33rd Street
New York, NY 10016
Phone: 1-800-622-9010 or 212-889-2210
Internet: www.kidney.org
National Organization of Social Security
Claimants' Representatives
560 Sylvan Avenue
Englewood Cliffs, NJ 07632
Phone: 1-800-431-2804
Email: [email protected]
Internet: www.nosscr.org
Social Security Administration
Office of Public Inquiries
Windsor Park Building
6401 Security Boulevard
Baltimore, MD 21235
Phone: 1-800-772-1213
Internet: www.ssa.gov
Local offices can be found in the telephone
book under U.S. Government, Department
of Health and Human Services.
United Ostomy Associations of America, Inc.
PO. Box 512
Northfield, MN 55057-0512
Phone: 1-800-826-0826
Email: [email protected]
Internet: www.ostomy.org
Acknowledgments
Publications produced by the Clearinghouse
are carefully reviewed by both NIDDK sci­
entists and outside experts. This publication
was reviewed by Philip Hanno, M.D., Uni­
versity of Pennsylvania.
Interstitial CystitislPainful Bladder Syndrome
You may also tind additional information about this
topic by visiting MedlinePlus at wlI'w.medlincplus.gov.
This publication may contain information about
medications. When prepared. this publication
included the most current information available.
For updotcs or for questions about any medications.
contact the U.S. Food and Drug Administration 1011­
free at J-S88-1NFO-FDA (J-888-463-6332) or visit
www.fda.gov. Consult your health care provider for
more information.
The U.S. Government does not endorse or favor any
spccific commercial product or company. Trade.
proprietory, or company names appearing in this
document are used only because they are considered
necessary in the context of the information provided.
If 0 product is not mentioned. the omission does not
mean or imply that the product is unsatisfactory.
National Kidney and
Urologic Diseases
Information Clearinghouse
3 Information Way
Bethesda, MD 20892-3580
Phone: 1-800-891-5390
TIY: 1-866-569-1162
Fax: 703-738-4929
Email: [email protected]
Internet: www.urologic.niddk.nih.gov
The National Kidney and Urologic Diseases
Information Clearinghouse (NKUDIC)
is a service of the National Institute of
Diabetes and Digestive and Kidney Diseases
(NIDDK). The NIDDK is part of the
National Institutes of Health of the U.S.
Department of Health and Human Services.
Established in 1987, the Clearinghouse
provides information about diseases of the
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families, health care professionals, and the
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This publication is not copyrighted. The Clearinghouse
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This publication is available at
wwwurologic.l1iddk.l1ih.guv.
U.S. DEPARTMENT OF HEALTH
AND HUMAN SERVICES
National Institutes of Health
N1H Publication No. J 1-322U
September 201 J
The Ie-Smart Diet
Many people with interstitial cystitis (IC) find that
simple changes in their diet can help to ontrol
IC symptoms and avoid IC flare-ups. Typically,
avoiding foods high in acid and potassiumos well as beverages containing caffeine and
alcohol-is a good idea. This helpful guide can
help you make "IC-Smart" meal choices. Keep
it handy for easy reference when dining out or
when preparing meals at home.
Fruits
Meats/Fish
Allowable: Poultry,
fish, and some meats
(except those listed belowl
Avoid: Aged, conned, cured, processed
or smoked meats/fish; anchOVies; caviar;
chicken livers; corned beef; and meats
that contain nitrates or nitrites
Nuts/Oils
Allowable:
Bananas, coconuts, dotes, blueberries,
melons (except cantaloupe), and pears
Avoid:
Allowable:
Most oils, almonds, cashews, and pine nuts
01
All other fruits and juices
°
Most other nuts
Vegetables
Beverages
Allowable:
Allowable:
Homegrown tomatoes and mony
vegetables [except those listed below)
Bottled or spring water; decaffeinated,
acid-free coffee or tea; some herbal teas; fI t soda
Avoid: Store-bought tomatoes, onions,
Alcoholic beverages, including beer and wine;
carbonated drinks, such as soda; coffee
and tea; and fruit juices, especially
citrus and cranberry
tofu, soybeans, lima beans,
and fava beans
Milk/Dairy
Seasonings
Allowable: Milk, American cheese,
Allowable:
cottage cheese, frozen yogurt, and
white chocolate
Garlic and some other seasonings
(except those listed bel w)
Avoid: Yogurt, sour cream,
• : Mayonnaise, miso, soy sauce,
sol d dressing, vinegar, and spicy foods
(especially Chinese, Mexican, Indian,
and Thai foods)
soy milk/cheese, aged heeses,
and chocolate
Carbohydrates/Grains
Allowable: Pasta, rice, potatoes,
and some breads (except those
listed below)
Preservatives
oid
Avoid:
Rye and sourdough breads
Benzyl alcohol; citric acid; monosodium glutamate (MSGJ;
aspartame (NutraSweet*); saccharin; and foods containing
preservatives, artificial ingredients/colors
°NutraSweel is a registered trademark of NutraSweel Property Holdings, Inc.
- -
--
=-------
~
-­
Dining Out: The Ie-Smart Way
Call ahead
Before making plans to eat at a restaurant, it's a good idea to call ahead and ask about the menu. This will
enable you to enjoy your me I and feel good afterward, too!
When ordering your meal
Ask questions
- Ask your waiter what spice are used in particular dishes
- If you are unsure of an ingredient, ask what it is
Modify your selection
-It's your meal-don', be afraid to specify how you would like it prepared
- When ordering a salad, tell the waiter flO tomatoes or onions
- Substitute a plain baked potato for a spicy rice combination
- Ask for salad dressings and other possible "trigger" items to be served "on the side"
Be careful with ethnic foods
- Many ethnic foods contain spices that you may be unfamiliar with
Know your "Ie-Smart" menu choices
- Most restaurants offer plain (not marinated) steak and chicken
- Some chain restaurant foods may contain preservatives when sold in the grocery store
Janssen
J
Janssen Pharmceuticals, Inc.
© Janssen Pharmaceuticals, Inc. 2011
Novembe' 70 1
02E..J63FA
Interstitial cystitiS (Ie) and £LmIROn® treatment
IC is a chronic, yet manageable, bladder condition, characterized by
bladder or pelvic pain, pain during or after sexual intercourse, urinary
urgency and frequency, and waking one or more times a night
to urinate.
r/
Bladder II1uc05al linll19
(glyco aminoglycan laye ')
,...--. Irritalinq 5ubst.ln ",
-!:I-.........
in til . ulin
~
~
UrothcliulTl
I
IC may be caused by a breakdown of the protective lining of the
bladder, which may allow irritating substances in the urine to
aggravate and inflame tile bladder wall, resulting in pain
While the precise way ELMIRON® works is not fully understood,
ELMIRON® is thought to adhere to the bladder mucosal lining,
preventing potentially irritating substances in the urine from
reaching the bladder wall.
-..:...,,~-+--
Inflarnmalion
Irrilillcd nerv"
Savings NOW AVAILABLE to new
and previous participants!
P. HMIR N Ear/~I Assi t
Co·Pa' uppo, rag am
• Pay as little as $5 per month-for up
to 4 months of ELMIRON® treatment
~
Sign up at www.orthoelmiron.ccim
EUvllRON® is a prescription medication used to treat the pain and
discomfort of interstitial cystitis (lC) It is not known exactly how ELMIRON<!<)
works, but it is not a pain medication like aspirin or acetaminophen and
therefore must be taken continuously for relief as prescribed by your doctor.
This product is available by prescription only
ELMIRON® should not be taken if you have aknown hypersensitivity to the
drug or similar drugs.
EUVlIRON® is aweak blood thinner (anticoagulant) which may increase
bleeding. Call your doctor if you will be undergoing surgery or if you are taking
or III begin taking anticoagulant therapy such as warfarin sodium, heparin,
high doses of aspirin, or anti-inflammatory drugs such as ibuprofen
Tell your doctor
- If you are pregnant or plan on becoming pregnant.
- If you have any liver problems
The most common side effects are hair loss, diarrhea, nausea, blood in
the stool, headache, rash, upset stomach, abnormal liver function tests,
dizziness, and bruising.
- Hair loss, when it occurred, was almost always limited to a single area
of the scalp
Tell your doctor about any side effect that bothers you or does not go away
You are encouraged to report negative side effects of prescription drugs to
the FDA. Visit wvvwfdagov/medwarch, or call1-800-FDA-1 088.
Please see full Product Information for ELMIRON")
Please read the ELMIRON® Patient leaflet and discuss it with your doctor.
I
It is uery important that you take £LmIROn@ as directed and stick with it
S mp!on relief may take 3 to 6 months
'(ou should take 1 caiJsule of EUvlIRON't' by mouth 3 times a day, with water, at least 1 hour before or 2 hours after meals.
Each capsule contains 100 mg of ELMIRON®
Allhough you may use other IC treatment options as needed, you should continue to take ELMIRON'& until otherwise
instructed by your healthcare professional
Do not stop taking ELMIRON'~ or reduce your dosage just because you are feeling better or because you think ELMIRON®
may not be working right away
Whil. taking ELMIRO , avoid anticoagulant therapy, such as warfarin sodium, heparin, high doses of anti-inflammatory drugs,
such as ibuprofen, until speaking with your healthcare professional
Schedule follow-up visits with your healthcare professional once a month for the first few months
Lifestyle modifications you can make to help manage symptoms
Dietary changes: Avoid spicy or acidic foods and beverages containing caffeine and alcohol
Gentle exercise: Walking, yoga, and low-impact aerobics may be beneficial
Stress-reduction and relaxation techniques: Try controlled breathing exercises, warm baths with baking soda,
and applying warm or cold compresses on the lower abdomen
Bladder trai ing: Practice scheduled voiding patterns
Physical therapy: Gentle stretching and pelvic floor muscle-relaxation exercises
Other therapies
Add'ltlonal resources, such as IC-friendly recipes, and stress and coping techniques, are available through the following
www.orthoelmiron.com: A Janssen Pharmaceuticals, Inc., Web site offering a wide range of
information on IC and ELMIRON® to patients
Journey to Reliefl : A free e-mail support program that provides you with great tips, resources,
and money-saving offers
Interstitial Cystitis Association (www.ichelp.com): A national, nonprofit organization offering
information and support to IC patients and their families
ELMIRON"' is a prescription medication used to treat the pain and discomfort of interstitial cystitis (lC) It is not known exactly how ELMIRON<t
works, but it IS not a pain medication like aspirin or acetaminophen and therefore must be taken continuously for relief as prescribed by your doctor.
i;:is product is a'!JiiJble by prescription only
ELMIRON~' should not be taken if you have a known hypersensitivity to the
ru or similar drugs
ELMIRON'~' is aweak blood thinner (anticoagulant) which may increase
The most common side effects are hair loss, diarrhea, nausea, blood in
the stool, headache, rash, upset stomach, abnormal liver function tests,
dizziness, and bruising.
- Hair loss, when it occurred, was almost always limited to a single area
of the scalp
bleeding Call your doctor if you will be undergoing surgery or if you are taking
orwdlbegin taking anticoagulant therapy such as warfarin sodium, heparin, Tell your doctor about any side effect that bothers you or does not go away.
You are encouraged to report negative side effects of prescription drugs to
high doses of aspirin, or anti-inflammatory drugs such as ibuprofen
the FDA. Visit wwwfdagov/medwatch, or call1-800-FDA-l 088.
Tell your doctor
Please see full Product Information for ELMIRON®.
- If you are pregnant or plan on becoming pregnant.
Please read the ELMIRON:t> Patient leaflet and discuss it with your doctor
- If you have any liver problems
FLMIRON is' legis .red trodemark 01 leva Global Resplra ory Research, Inc.. under license to Janssen Pharmaceuticals. Inc.
Janssen Pharmaceuticals, Inc.
lJa'15~e')
PharlHilo::ell ica)s. Inc. 20'1
AuguS\ 2011
Janssen
02E09048R3
J
atie t Assessmen' Questionna·re
Todoy's date:
_
This questionnaire may help you and your doctor monitor your interstitial cystitis (IC) symptoms
Before you begin treatment with ELMIRON'" (penlosan polysulfate sodium), be sure to fill out the questionnaire below Remember, ELMIRON"
may have a gradual effect on symptoms-sometimes laking up 10 3 months until noticeable improvement is seen. It's important to take
ELMIRONs, continuously as your doctor has prescribed. After 3 months of taking ELMIRON":, toke the questionnaire again. By reviewing your
answers, you and your doctor will be able to track your progress.
Instructions
For each question below, please circle the answer that best describes how you feel Then, mark your score (0 to 4) for each answer in the
column on the right. When you are finished, odd up the numbers in this column for your totol score.
-­
~
1
How many times do you go to Ihe bathroom during the day?
a. How many times do you go to the bathroom at night?
2
3
b.
If you get up at night to go 10 the bathroom,
does it bo her you?
36
7-10
0
11-14
15·19
20+
2
3
4+
Never
Mildly
Moderately
Severely
Never
Occasionally
Usually
Always
Never
Occasionally
Usually
Always
Never
Occasionally
Usually
Always
No Pain
Mild
Moderate
Severe
Never
Occasionally
Usually
Always
Never
Occasionally
Usually
Always
No
Urgency
Mild
Moderate
Severe
Never
Occasionally
Usually
Always
YES _ _ NO
Are you currently sexually active'
a. IF YOU ARE SEXUAllY ACTIVE, do you now or have
you ever had poin or symptoms during or after sexual
intercourse'
4
b.
5
If you have pain, does il make you avoid
sexuol intercourse?
Do you have poin associated with your bladder or in your
:;2'"is (vosino, lower abdome. , urethra, perineum, testes,
()' scratum)'
If you do not have pain, please skip question 6.
6
7
8
a. if you have pain, is it usually.
b.
Does your pain bOlher you 2
Do you have urgency ofter going 10 the bathroom'
If you do not have urgency, please skip final question.
a. If you have urgency, is it usually
b.
Does your urgency bOlher you?
© Thi' i,,, n0crifi.,d versiar of Ihe pelvic po in, urgency, and froquency (PUf) scale in the following article:
IP ~ons Cl et 01 Urology 2002;60:573·578). 2000 C lowell Pnrsanl, MD.
Total Score
What is EI.MIRON' (pentosan polysulfate sodium)?
ELMIRON- is a prescription medication used to treat the pain and discomfort of interstitial cystitis [IC). It is not known exactly how ELMIRONC
works, but it is not a pain medication like aspirin or acetaminophen and therefore must be taken continuously for relief os prescribed by your doclor.
Important Safety Information
• E MIRON~' should not be token if you have a known hypersensitivity to the drug or similar drugs.
• ELMIRO ' is a weak blood thinner [anticoagulant) which may increase bleeding. Call your doctor if you will be undergoing surgery or
if you are taking or will begin taking anticoagulant therapy such os warfarin sodium, heparin, high doses of aspirin, or anti.inflammatory
drugs such as ibuprofen.
• Tell your doctor:
- If you are pregnant or plan on becoming pregnant.
- If you have any liver problems
• The most common side effects are hair loss, diarrhea, nausea, blood in the stool, headache, rash, upset stomach, abnormal liver :""ction
U
tests, dizziness and bruising.
-.0
o
- Hair loss, when it occurred, was almost always limited to a single area of the scalp.
o
Tell your doctor about any side effect that bothers you or does not go away. You are encouraged to report negative side effects of
prescription drugs to the FDA Visit www.fda.gov/medwatch, or call 1-800·FDA-1088.
Please see the accompanying full Product Information for ELMIRON;[).
Please read the ELMIRONs Po\iell\ \eofle\ and discuss any questions with your doctor.
www.orthoelmiron.com
Janssen
Janssen Pharmaceuticals, Inc.
Q
JalnSS~il Pharmi;l:eei.)tlcol~.
Inc. 2013
Mnrci12013
K02E12007
What causes Ie?
• IC may be caused by damage to the mucous layer
that protects the bladder wall. This damage may
allow irritating substances in the urine to aggravate
and inflame the bladder wall, resulting in pain
How does ELMIRON work?
• ElMlRON is believed to act as a buffer, preventing
potentially irritating substances in the urine from reaching
the bladder wall. Therefore, ElMlRON is thought to treat
an underlying issue of IC, as well as the symptoms
Replenished
protec1ive lining
Irritated nerve ----'\;;::'::~'"~. ."'''
For additional information on IC, please visit www.allaboutic.com or
www.ichelp.org. To enroll in the ElMIRON patient support program and access
valuable product coupons and helpful tools, please visit www.orthoelmiron.com.
The mechanism
of action of ElMIRON in interstitial cystitis is not fully understood.
ELMIRO
Oer'vSar J)I'~SII a-e sod I {II 2~
Important Safety Information
What should I expect with ELMIRON?
ELMIRON is indicated for the relief of bladder pain
or discomfort associated with interstitial cystitis.
• ELMIRON has helped many people with IC and it may help
you. Studies show that ELMIRON relieves bladder pain, in
some patients, in as soon as 3 months
ELMIRON has been shown to be generally well­
tolerated. The most common side effects were blood
in stool, diarrhea, nausea, hair loss, headache,
rash, upset stomach, abdominal pain, liver function
abnormalities and dizziness. When side effects did
occur, they were generally mild and usually did not
interfere with continuing treatment. Hair loss, when
it occurred, was almost always limited to a single
area of the scalp, and it grew back when ELMIRON
was discontinued. ELMIRON is a weak anticoagulant
(blood thinner), which may increase bleeding. Call
your doctor if you will be undergoing surgery or will
begin taking anticoagulant therapy, such as warfarin,
heparin or high doses of aspirin; or anti-inflammatory
drugs, such as ibuprofen.
• It is important to remember:
~ A single lOO-mg capsule
of ELMIRON should be
taken 3 times a day
~ Symptom improvement is generally gradual and relief
may require 3 to 6 months of continuous therapy.
Therefore it is very important that you take ELMIRON as
directed and stick with it
~ While you may use other IC treatment options as needed,
you should continue to take ELMIRON until
otherwise instructed by your healthcare professional
~ Do no\ slop laking ELMIRON or reduce your dosage just
because you are feeling better or because you think
ELMIRON may not be working right away
Please see full Prescribing Information.
~ If you don't experience improvement within 6 months, talk
ELMIRON is a registered trademark of IVAX Research, Inc.,
under license to Ortho-McNeil-Janssen Pharmaceuticals, Inc.
to your healthcare professional. You may not benefit from
continued treatment
EEl
Bayer HealthCare
Pharmaceuticals
a.,-
t""'
...
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"-.
.,.",...,...
ELMIRON
~ r .. 581'
pcy ura's "'OdL
,,~O~~
~Dr.~
irrillard' .
~
Hbsorb euer1jthing­
better...nutrients,
uitamins, minerals, etL
For over 40 years Willard Water has been used by
people all over the world as a foundation for excellent
balance. Willard Water offers many benefits when
consumed daily.
Benefits
• Natural Source of Macro and Trace Minerals ­
Essential to Maintaining Optimal Balance
• Highly Efficacious and Bio-available Formula
• Reduction of Stress ­ Due to the Body's Increased
Ability to Assimilate Vital Nutrients More
Efficiently
• Natural Free Radical Scavenging Activity
• More Cellular Energy = Increased Energy
• Overall Homeostasis
• Improved Functionality of the Body's Natural
Defense System
• Highly Alkaline - pH of 12.3
Q. What is Willard Water
exactly?
A. Pul simply Willard Water' is an altered
form of water that has been activated
with the addition of apatented micelle
catalysl developed by Dr John W. Willard,
PhD. When consumed daily,
Dr Willard's Water' has lome very
unusual properties, setting it aparr Irom
regular water, leading to several benefits
including enhanced nutrient assimilation,
increased toxin removal, and cellular
stressfeduction.
Q. How can the product help
with vitamln/minerall
nutrient absorption and
tOllin removal?
A. Willard Water' breaks down food and
toxin partides in the bloodstream into
even smaller partides whl(h allows the
body and cells to more readily absorb
the good while more efficiently fiushing
the bad.
Q. Can WIII.,d Water be
consumed by people with a
gluten Intolerance1
A. Yes'lndividuals who have agluten
intolerance often have problems with
both digestion and the absorption of
nutrients. Because Dr Willard's Water
aids digestion and improves nulrient
assimilation lor all users by helping the
body break down lood, Dr Willard's
Water can be consumed by people with
gluten intolerance.
Q. How does the product help
with my pH or Int rnal
alkalinity?
A, Expertl believe Ihatthe body's pH
levell are akey factor in determining
one'l overall balance. Willard Wate, has
avery high alkaline pH value of 12.3 and
when diluted as directed permanently
increases water pH by up to two points
which helpI rellore agood pH balance in
the body.
For questions or
additional
information contact
Dr. Willard's at
888-379-4552 or
www.drwillard.com.
Vicki Ratner, MD, leA President & Founder
Co-Chairs
• Alan Wein, MD
Chief of Urology, University of Pennsylvania Health System
• Philip M. Hanno, MD
Clinical Professor of Urology, University of Pennsylvania
Health System
o,;rd h1emb"rs
• Daniel Brookoff, MD, PhD
University of Tennessee, Memphis
• David A. Burks, MD
Henry Ford Hospital, Detroit
• Daniel B. Carr, MD
Tufts-New England Medical Center, Boston
• Toby Chai, MD
University of Maryland Medical Center
• Robert J. Evans, MD
Moses Cone Health System, Greensboro, NC
• David Kaufman, MD
Columbia College of Physicians & Surgeons
• Susan Keay, MD, PhD
Division of Infectious Diseases
University of Maryland School of Medicine
• Robert Moldwin, MD
Long Island Jewish Medical Center
• Diane Newman, RN, MSN
University of Pennsylvania Medical Center
• Christopher K. Payne, MD
Department of Neurourology
Stanford University School of Medicine
• John W. Warren, MD
Division of Infectious Diseases
University of Maryland School of Medicine
• Ursula Wesselmann, MD, PhD
Johns Hopkins University School of Medicine
• Kristene E. Whitmore, MD
Graduate Hospital, Philadelphia
l~( t
1/ COil
(I.
•
Patients, Researchers, Caregivers
Putting the Pieces Together
ln'
110 North Washington Street
Suite 340
Rockville, MD 20850
NIDO'"
• leroy M. Nyberg, MD, PhD
Urology Director, NIDDK
~~",,,,,-)\\n,,,,,,, "n''''lte,,'c) This brochure is made possible
'"
.. .
..
by an educational grant from
Ortho Women's Health & Urology
©OrUlo-McNeil Phannaceutlcal, Inc. 2006
xua 0ty
T e Interstitial
Cystitis
Association
• Monica Liebert, PhD
Director of Research
American Urological Association
.,,,;.. 00 10
I terstitial
Cysti is &
March 2006
02E8872R1·A
Tel: 301.610.5300
Fax: 301.610.5308
Toll-Free: 1-800-HELP-ICA
E-mail: [email protected]
Website: www.ichelp.org
I
J"
9
I
ment with alternatives to intercourse.
help "cool the burn."
With medical supervision, some IC patients have
tried using at-home bladder instillations of local anes­
thetics such as lidocaine or Marcaine'" either before
or after sex. (If you are doing self-catheterization, be
sure to do so only in consultation with your doctor.)
• Small finger-shaped balloons filled with water can
be frozen and then inserted into the vagina briefly
immediately after sex to help reduce irritation.
.
\
If intercourse is just too painful, there are reasonable
alternatives. "Outercourse" is sexual activity that
includes everything except intercourse: sex talk,
sharing fantasies, cUddling, reading erotica, watching
sexy videos, kissing from head to toe, bathing
together, sensual massage, individual or mutual
masturbation, and oral sex.
In the past, any sexual activity other than sexual
intercourse was viewed as something that "bad girls"
did to please men, and today, some women remain
reluctant to try outercourse for this reason. But oral
sex and other types of outercourse are pleasurable
and perfectly normal. Some women who have IC find
that oral sex or stimulation of their genitals with
hands or fingers is more comfortable than
intercourse. The partner with IC can still bring their
partner to orgasm orally or manually, even if IC
symptoms are too painful for intercourse. Couples
can also try a form of intercourse in which the
woman crosses her legs and the man thrusts his
penis between her thighs.
IC patients have come up with a variety of creative
suggestions to help make sex more comfortable.
These include:
• Reaching orgasm quickly to reduce friction on
sensitive tissues.
• Being very aroused before penetration, or using a
vibrator. Using vibrators is intolerable to some, but
others say that a small, battery powered vibrator
helps to achieve orgasm quickly and reliably, thus
avoiding excessive friction. Also, the man should be
very aroused before penetration so that orgasm
comes quickly, and there will be less trauma from
prolonged or deep thrusting.
• To reduce the risk of bladder infection, drink water
or other fluids before and after sex. Voiding a rea­
sonable amount of urine after sex helps to flush out
the urinary system. Diaphragms have also been
identified as causing repeated urinary tract infections
in some women, as have spermicidal jellies or lubri­
cants containing nonoxynol-9.
Having a painful, chronic illness like IC often results
in a loss of sexual interest or ability to become
aroused. The need for frequent trips to the toilet
may make people feel undesirable or sexually
inadequate. Pain, stress, depression, the menstrual
cycle, and certain medications, including antihista­
mines, painkillers, and antidepressants, may also
interfere with sexual interest and activity. If you think
you are feeling depressed right now, it would
probably be helpful to see a psychotherapist. If you
are not sure of the type of therapy you need, there
are various guides sold in bookstores that may be
helpful. A sex therapist may also be of help in sug­
gesting ways to increase sexual interest and activity.
-
- - I,
"
Pain during sex can be the result of insufficient
vaginal lubrication. This may be due to less frequent
sexual activity, drugs that dry out mucous
membranes, or lowered estrogen levels after
menopause. Pain can also result on penetration if
the female partner is not aroused enough to produce
natural lubrication. In this case, delaying penetration
until the woman is fully aroused is helpful.
Regular sexual activity, either alone or with a partner,
is often enough to keep the vagina moist.
Try natural or synthetic lubricants, including
vegetable oil, aloe vera gel, water-based lubricants,
and other lubricants such as AstrogJide". You can find
these products in pharmacies next to the feminine
hygiene products or condoms, or they can be
ordered through various mail order companies or
• For pain or burning after sex, a cold gel pack may
I
/­
online. Adding Vitamin E oil to your lubricant may aid
healing of raw tissues.
• Estrogen cream. placed directly into the vagina.
will help keep the vaginal tissues moist. However,
estrogen is not a cure. it merely relieves symptoms.
and there are certain risks attached to regular use,
so consult your doctor before using.
Erl.,,-·~ilt
r}r, l
I:'rH:,
Men of any age. on occasion. may find it difficult to
become erect or to have an erection which is hard
enough for intercourse. However. erectile difficulties
become more common after the age of 40. Some
men with IC have difficulties with erections because
of genital pain, or embarrassment that their frequent
need to void will disrupt sexual activity with a part­
ner. Many medical conditions. including diabetes.
heart, and circulatory diseases can also contribute
to erectile problems. Partners of IC patients may
develop erectile problems because they are afraid to
hurt the woman during intercourse. Finally. excessive
use of alcohol, depression, anxiety, and insufficient
arousal can also interfere with erection.
Whether erectile failure occurs regularly or occasion­
ally, it is important to remember that intercourse is
only one way of having sex; there are many other
ways that you and your partner can give each other
pleasure. Some men find that focusing on whole
body sensuality instead of genital sensations alone
helps reduce performance pressure, and enhances
their ability to become erect. Even more important,
good communication with a loving partner is an
essential ingredient in improving sex. There are a
number of urological treatments available for alleviat­
ing erectile problems, b~t these should be used only
on the advice of a trained physician. Often. couples
find that sex therapy alone helps them improve their
sexual lives greatly.
• Various articles from our Resource Materials Guide
available through the ICA.
The ICA is a non-profit organization working interna­
tionally on behalf of all IC patients. Its goals are:
• To provide the most comprehensive and up-to-date
information on IC.
• To provide IC patients, their families and friends
with a support network.
• To educate the medical community and the public
about IC.
• To advocate in the public and private sectors for
research funding and patients' rights.
• To promote and provide research funding to find
effective treatments and a cure for IC.
GenerallC Brochure>
IC & Diet Brochure>
IC & Self-Help Brochure
Ie & Men Brochure
Vulvar Pain Brochure
> Spanish Language Version also available
The ICA 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, the
ICA recommends that you consult your own physician regarding any
course of treatment Or medication.
Copyright © 2006 The Interstitial Cyslitis Association (ICA), Maryland.
Material may not be reproduced in whole or in part without special
written permission.
RBX06J
About the leA
The Interstitial Cystitis Association (ICA) is the only
nonprofit health association dedicated to improving
the quality of healthcare and lives of people living
with interstitial cystitis (IC).
Conquering Ie. Changing Lives.
The ICA provides advocacy, research funding, and
education to ensure early diagnosis and optimal
care with dignity for people affected by Ie. Our
work is made possible through the generosity and
vision of individuals as well as of foundations and
corporations.
Donations help us to keep programs and services
operating at peak strength so that every IC patient
who needs help can have it-no matter where he or
she may live, no matter how disabled they may be.
Your donation dollars also enable the ICA to continue
to fund new IC research projects as well as to work
closely with Congress to ensure ongoing federal
funding of IC-specific research.
Helpful links
•
•
www.ichelp.org/AboutIC
www.ichelp.orgjVulvodynia
The information provided by the ICA is designed to
support, not replace, the relationship that exists between
an individual and his/her healthcare provider.
Copyright © 2013 Interstitial Cystitis Association (ICA)
Material may not be reproduced in whole or in part
without speciql written permission.
Janssen
PHARMACEUTICAl. COMPAHIl;S
01"
'or»,"lO')1."9o~u,0't\
T
Content of this brochure
has been developed by ICA.
Printing of this brochure
is sponsored by Janssen
Pharmaceuticals, Inc.
.,--=-:---..--Conquering IC
C anging Lives
Interstitial
Cystitis
Association
www.ichelp.org
K02EllOl!'!.RBV
Ie Patients?
IC and Vulvodynia
What Causes Vulvodynia in
The term vulvodynia (pronounced vulvo-DIN-ee-ah)
means pain in the vulva-the female external genital
organs. The condition is very common in women with Ie.
Although the precise cause is not known, some re­
searchers speculate that vulvodynia and Ie are closely
related because the bladder, urethra, and vulvovaginal
tissues have a common embryonic origin. These struc­
tures are also surrounded and supported by the same
muscles, and the nerves that serve them communicate
with the same areas of the spinal cord. Some of the
proposed causes of vulvodynia include:
• nerve injury or irritation or increased density of nerve
fibers
• allergies or sensitivities
• inflammation
• abnormal tissue response to infection, trauma, or
substances in the environment
• hormonal changes
• genetic susceptibility to pain or vulvar inflammation
or inability to combat vulvovaginal infection
• hypersensitivity to yeast (Candida) or other organ­ isms
• pelvic floor muscle dysfunction
Vulvodynia can make sex or any other activity that puts
pressure on the area painful-prolonged sitting, bicycle
or horseback riding, inserting a tampon, or even wear­ ing fitted pants. Many treatments are available that can
ease this pain and help you regain physical activity and a
satisfying sex life.
Types of Vulvodynia
There are two main types of vulvodynia, which some­ times co-exist:
Vulvar vestibulitis syndrome (also called provoked
vestibulodynia)
In this type, pain is limited to the entrance to the vagina,
called the vestibule. The pain is usually provoked by
external touch or by pressure from sexual intercourse,
tampon insertion, tight pants, bicycling, or horseback
riding.
Generalized Vulvodynia
In this type, pain may be located in the vestibule or
in other areas of the vulva, such as the labia, clitoris,
perineum, or inner thighs. The pain occurs spontane­
ously and may be constant, but it can be aggravated by
activities that put pressure on the area, such as pro­
longed sitting or wearing fitted pants.
Your provider may also examine the tissue through a
magnifier or take a specimen for biopsy. Examination
and cultures will help rule out bacterial or yeast infec­
tions or skin disorders. Blood tests will help determine
whether hormone levels may playa role.
Pubis --+"7"---­
Clitorls-------+'Q
Vestibule
Urefhral mecrtus------1--1~~1~
Labia majora ------t
Labia minora ------\-___."\'
Perineum
----~
Anus----~
~
How is Vulvodynia Diagnosed?
Your provider will take a thorough medical history, ask
about your symptoms, and examine your vulva, va­
gina, and vaginal secretions carefully. The hallmark of
vulvodynia is sensitivity to touch, which your provider
will test with a cotton-tipped swab. He or she will gently
apply pressure to various parts of your vulva and ask
how it feels.
Introitus
How is Vulvodynia Treated?
Because vulvodynia not only causes pain but also affects
your daily activities, your relationships, and your mental
health, getting better may take a combination of self­
help techniques, medical treatments, and psychological
support. That's why you may need a multidisciplinary
team of providers to help you, such as a gynecologist or
vulvovaginal specialist, a dermatologist, a physical thera­
pist, and a sex or couples therapist or psychologist.
I
No one treatment or combination works for everyone,
so be sure you have a give-and-take with your providers
about what helps, what doesn't, and what you need.
Become Part of the ICA Community
Annual membership donations to the Interstitial
Cystitis Association ensure a steady stream of funding
to fuel advocacy activities, expand research funding,
and raise awareness about IC,
Self-help techniques
AVOID IRRITANTS
Detergents, fabric softeners, toilet paper, certain under­
wear fabrics, pads or tampons, and soaps or creams may
be irritating, so avoid bleach, fabric softener, douches,
contraceptive creams or foams, and hot tubs or pools
with chlorine. Try nonirritating, unscented detergent,
paper products, and toiletries, and wear all-cotton un­
derwear. After urinating, use a squirt bottle or bidet to
rinse with cool water. Dry gently.
TAKE THE PRESSURE OFF
Wear loose-fitting pants or skirts, sit on a cutout cush­
ion, avoid cycling and horseback riding, use nonirritat­
ing lubricants for sex, learn lovemaking techniques that
minimize irritation (see our brochure Sex and Ie).
• Learn more at www.ichelp.org/LivingWithIC
AVOID DIET TRIGGERS
The items that provoke your bladder may also affect vul­
vodynia. Some also suggest a low-oxalate diet. Everyone
is different, so use an elimination diet to find out which
dietary items affect you.
• Learn more at www.ichelp.org/Diet
For an annual contribution of $45.00 or more ($75.00
outside of the US) you will become a part of the ICA
community and receive an ICA Patient Education
Kit with information about IC, treatment options,
research initiatives, and a restroom access card.
As an ICA member, you also receive:
• Award-winning, quarterly magazine-ICA Update
• News and research updates via the ICA eNews
• A 50% discount on materials in the ICA Store
• Discounted registration rates for ICA patient
forums and other events
To join, send a check or money order (US funds only)
made payable to ICA with this form to the address
indicated below or join online at
www.ichelp.orgjmembership.
Donations to the ICA are tax-deductible to the fullest
extent allowable by law.
SOOTHE YOUR BODY AND MIND
Apply heat or cold, whichever feels helpful at the time,
with warm or cool baths or sitz baths, oatmeal baths,
warm or cool pads or packs on the vulva, or something
that can be safely warmed or cooled and inserted in the
vagina, such as certain adult recreational products or
the finger of a medical glove filled with chilled or warm
water. Relaxation, visualization, or meditation can also
help.
Keep the dialogue going
Help others understand the need to find
REAL answers about IC!
Please make your donation in US funds only.
Please do not send cash.
Conquering IC.
Changing lives.
ORAL MEDICATIONS
Pain relieving medications include tricyclic antidepres­
sants, serotonin-norepinephrine reuptake inhibitors
(SNRls), anticonvulsants, and opioids. Antifungals for
yeast or antihistamines may be helpful.
The ICA 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, the ICA recommends that you
consult your own physician regarding any course of
treatment or medication.
_I
I
Donation and Membership Form
Your membership support is vital for keeping ICA
programs and services running at full speed!
Title: [ ]Ms. [ ]Mrs. [ ]Mr. [ ]Dr. [ 1
_
Name:
_
Address:
_
City:
_ State:
Zip:
_
Phone: [ ] Home [ ] Work [ ] Cell
_
Email Address:
_
I have been diagnosed with IC:
[ ] Yes
I am a friend or relative of someone with IC: [
I am a healthcare provider:
[l Yes
[1 No
1Yes
TOPICAL MEDICATIONS
These may include topical lidocaine or hormones or
other medications that may need to be compounded
into creams, gels, or suppositories, such as muscle relax­
ants, anticonvulsants, mast cell stabilizers, capsaicin,
and other medications.
[ ] No
[1 No
I am enclosing a check for the amount indicated (please circle):
$500
$250
Visa
$100
MasterCard
$75
$45
Discover
Other: $
_
American Express
Card Number:
_
Signature:
_
Expiration Date:
_
3 or 4-digit Security Code on Card:
_
Today's date:
_
Make checks payable to ICA and send to:
Interstitial Cystitis Association
P.O. Box 17522
Baltimore, MD 21297-1522
INJECTIONS
Injection of anesthetics or other medications beside
nerves that serve the vulva or into pelvic muscle trigger
points can be done in a doctor's office. Onabotulinum­ toxin A (Botox) injected into the vestibule, pelvic floor
muscles, and other vulvar sites is beginning to be used
as a treatment. Interferon injections are sometimes
used for vulvar vestibulitis.
PHYSICAL THERAPY
Pelvic floor therapy should be aimed at relaxing, not
strengthening, the pelvic floor muscles as well as releas­
ing muscle trigger points, connective tissue restrictions,
and nerves.
INTERVENTIONAl THERAPY
For more severe pain, spinal cord or peripheral nerve
stimulators or pumps that release pain medications into
the spinal canal can be implanted.
SURGERY
Women with severe vulvar vestibulitis may be candi­ dates for vestibulectomy, a surgery that removes some
or all of the vestibule.
liJ_
I
About the ICA.
The Interstitial Cystitis Association (ICA) is the only
nonprofit health association dedicated to improving
the quality of healthcare and lives of people living
with interstitial cystitis (IC).
Conquering Ie. Changing Lives.
The ICA provides advocacy, research funding, and
education to ensure early diagnosis and optimal
care with dignity for people affected by Ie. Our
work is made possible through the generosity and
vision of individuals as well as of foundations and
corporations.
Donations help us to keep programs and services
operating at peak strength so that every IC patient
who needs help can have it-no matter where he or
she may live, no matter how disabled they may be.
Your donation dollars also enable the ICA to continue
to fund new IC research projects as well as to work
closely with Congress to ensure ongoing federal
funding of IC-specific research.
Helpful Links
•
•
www.ichelp.org/AboutIC
www.ichelp.org/lntimacy
The information provided by the ICA is designed to
support, not replace, the relationship that exists between
an individual and his/her healthcare provider.
Copyright © 2013 Interstitial Cystitis Association (ICA)
Material may not be reproduced in whole or in part
without special written permission.
Janssen
April 2013
J
Content of this brochure
has been developed by ICA.
Printing of this brochure
is sponsored by Janssen
Pharmaceuticals. Inc.
K02E13004 RBX
Sex and Ie
Sex and
Ie
For most IC patients, sexual intimacy is a challenge.
ICA surveys and research estimate that from 60 to 90
percent of people with IC have difficulties with sex. For
many, IC has prevented them from having any sexual
intimacy.
It doesn't have to be that way. There are many ways
to remain sexually active or resume your sex life, and
there are treatments that can help. Most IC patients
can reclaim physical intimacy when they, their part­
ners, and their healthcare providers work together.
Treatment Is Tops
The best way to ease pain with sex is to treat your IC
symptoms-and the research shows it. If your IC symp­
toms aren't under control, work with your healthcare
provider to find the IC treatments that work for you.
You may need a combination of treatments aimed at
the bladder, the pelvic floor, and, for women, the vulvar
area, since all three can be sources of pain with sex.
Some local treatments can be especially helpful for pain
with sex, such as muscle relaxants in vaginal or rectal
suppositories and topical numbing agents.
Plan Ahead
How
Ie Affects Se,
Both women and men with IC may have pain during
or after sex and even sometimes with arousal. The
most common pain for women during sex is pain with
thrusting, although they may also have pain with pen­
etration, urethral or clitoral irritation, or orgasm. Simi­
larly, men may have perineal, penile, or scrotal pain or
pain with ejaculation. Both men and women may have
IC flares after sex. It's thought that the pain can come
from pressure on a sensitive bladder, irritation of the
urethral area, or pelvic floor muscle problems.
Let's Talk
Touch can help ease chronic pain and strengthen the
bond between you and your partner. So don't miss
out on that part of life! Raise your concerns with your
healthcare provider. Be honest with your partner
about the activities that are painful, but reassure your
partner that you can have satisfying intimacy with
some adjustments and treatments. If it's difficult to
talk, bring your partner to an appointment or ask for a
referral to a therapist experienced in helping couples
with intimacy and chronic pain.
Take steps to feel your best at the time of your intimate
encounter.
Go for "pretreatment." And, plan on having intimacy
soon after the appointment with your healthcare
provider. That way, you can get helpful "pretreatment,"
such as:
• bladder instillations
• trigger point injections
• intravaginal or intra rectal muscle relaxants
• oral pain medication (take them so their maximum
effect is timed for your planned encounter)
• topical medication, such as lidocaine gel, that help
prevent pain during sex
This is also a time to get any prescriptions you might
need for medications to use after sex.
Avoid flare triggers. Restrict foods and drinks that trig­
ger flares. Also, it may be best to hold off on lovemaking
until you have an empty bladder and stomach.
"Test drive" products and activities. Ask your health­
care provider if your bladder and pelvic floor are quiet
enough to tolerate stimulation or penetration. Women
can build and test their tolerance for penetration with
vaginal dilators. Men and women can see if they can
tolerate orgasm before trying with a partner. If you or
your partner wants to try a new lubricant, test a small
amount to be sure you can tolerate it before you use it
during sex.
Relax. Sexual activity is more comfortable when mus­
cles-especially your pelvic floor muscles-are relaxed.
Take a hot bath, stretch, do any helpful at-home physical
therapy, meditate, or use other relaxation techniques.
Numb up. Use lidocaine gel on the vulva or in the vagina or
rectum. Partners can avoid numbing by using a condom.
Adapt Your Sexual Technique
Make sex a whole mind-body experience. Explore
intimate touch that feels good and focus less on orgasm
as the goal.
Try oral or manual stimulation. If orgasm is okay but
penetration is not, manual or oral stimulation are op­
tions. Mutua I masturbation can be satisfying for both
participants.
Use " outercourse" techniques. When penetration is too
uncomfortable for the partner with IC, couples can use
techniques that help simulate it, such as rubbing bodies
together in a "spoon" position or thrusting the penis
between the thighs, buttocks, or breasts.
Go slowly. If you are a woman with IC and are resuming
intercourse after a respite, start slowly. First, try pen­
etration only and no thrusting. If that causes no flare,
progress to gentle rocking and later to thrusting as you
can tolerate it.
Use lubrication. Personal moisturizers and lubricants in­
crease comfort and relieve friction during sexual activity.
Use products that are not irritating.
.-
Limit intercourse intensity and duration. If women and
men with IC can tolerate intercourse, they can do so for
limited amounts of time. As a couple, decide to limit
thrusting time to a maximum of 3 to 5 minutes to start.
Then, increase the time gradually as tolerated.
Try alternative positions. Lying side-by-side may be
most comfortable. For women with IC, being on top and
leaning forward may also be a comfortable position, or
having the partner stand while the other is lying down
may be helpful.
Become Part of the ICA Community
Annual membership donations to the Interstitial
Cystitis Association ensure a steady stream of funding
to fuel advocacy activities, expand research funding,
and raise awareness about Ie.
For an annual contribution of $45.00 or more ($75.00
outside of the US) you will become a part of the ICA
community and receive an ICA Patient Education
Kit with information about IC, treatment options,
research initiatives, and a restroom access card.
As an ICA member, you also receive:
•
•
•
•
Award-winning, quarterly magazine-ICA Update
News and research updates via the ICA eNews
A 50% discount on materials in the ICA Store
Discounted registration rates for ICA patient
forums and other events
To join, send a check or money order (US funds only)
made payable to ICA with this form to the address
indicated below or join online at
www.ichelp.orgjmembership.
Donations to the leA are tax-deductible to the fullest
extent allowable by law.
Keep the dialogue going
Help others understand the need to find
REAL answers about IC!
Please make your donation in US funds only.
Please do not send cash .
Conquering Ie.
Changing lives.
The ICA 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, the ICA recommends that you
consult your own physician regarding any course of
treatment or medication.
Donation and Membership Form
Take Care of Yourself after Intimacy
Heat if you need it. If muscles are spasming or sore, es­
pecially after orgasm, relaxing with the heat of a warm
bath, warm pack, or heating pad may be relaxing.
Your membership support is vital for keeping ICA
programs and services running at full speed!
l
Title: [ ]Ms. [ ]Mrs. [ ]Mr. [ ]Dr. [
Name:
_
Address:
_
City:
Cool off. On the other hand, some women or men find
using a cool pack on the vulva or perineum to be sooth­ ing. Ask your healthcare provider or physical therapist
about internal cooling, for example, with the finger of a
surgical glove filled with chilled water or a chilled device
that's used for internal massage.
_
_ State:
Zip:
Phone: [ ] Home [ ] Work [ ] Cell
_
Email Address:
_
I have been diagnosed with IC:
[ ] Yes
[1 Yes
Medicate. Take your pain medicine, muscle relaxant, or
anti-inflammatory or use your internal muscle relaxant
or pain medication.
[ ] No
I am a friend or relative of someone with IC: [ ] Yes
I am a healthcare provider:
Ease the burn. Use lidocaine gel on the vulva, vagina, or
penis to cool the burn from friction.
_
Give your pelvic floor time to relax. After sex, some
IC patients can't start a urine stream. This usually goes
away after a short while when the pelvic floor relaxes. A
warm bath can help.
[ ] No
[ ] No
I am enclosing a check for the amount indicated (please circle):
$500
$250
Visa
$100
MasterCard
$75
$45
Discover
Other: $
Follow-up with your healthcare provider. Let your
healthcare team know what is working-and what is not
working. Ask what you can do to decrease any pain or
distress associated with sex.
_
American Express
Card Number:
_
Signature:
_
Expiration Date:
_
3 or 4-digit Security Code on Card:
Today's date:
_
_
Make checks payable to ICA and send to:
Interstitial Cystitis Association
P.O. Box 17522
Baltimore, MD 21297-1522
I
-'