Diagnosing and treating interstitial cystitis
Diagnosing and treating interstitial
If only it were as simple as a urinary tract
Interstitial cystitis is a chronic inflammation
of the bladder that sends many women on urgent
trips to the bathroom to urinate — sometimes
painfully — as often as 40, 50, or 60 times
a day, around the clock. The discomfort can be
so excruciating and difficult to manage that
only about half of women with the disorder work
full time. Their quality of life, research suggests,
resembles that of a person on kidney dialysis
or suffering from chronic cancer pain. Not surprisingly,
the condition is officially recognized as a disability.
Of the more than 700,000 Americans who have
interstitial cystitis, as many as 90% are women.
The average age at onset is 40. Several other
disorders are associated with the condition,
including allergies, inflammatory bowel syndrome,
fibromyalgia (a condition causing muscle pain),
and vulvitis (pain in the soft folds of tissue
outside the vagina).
There’s no cure for interstitial cystitis,
but many treatments offer some relief, either
singly or in combination. Fortunately, increasing
awareness is helping to speed diagnosis of this
frustrating condition and encourage research
into how it develops. Surgery is rarely needed.
Difficult to pin down
Interstitial cystitis can vary greatly from
woman to woman and even in a given individual.
Symptoms may change from day to day or week to
week, or they may remain constant for months
or years and then resolve spontaneously, with
or without therapy. Bladder pain ranges from
dull and achy to acute and stabbing. Discomfort
while urinating also varies, from mild stinging
to burning. Sexual intercourse may ignite pain
that lasts for several days.
In premenopausal women, symptoms often worsen
with menstruation. Data suggest that some pregnant
patients experience complete relief during the
second and third trimesters.
Women who have interstitial cystitis don’t
have any special risk factors except for childhood
bladder problems, such as day and night wetting,
which are 10–12 times more likely in women
with the disorder than in those without it. Most
are initially treated for urinary tract infections,
that is, with antibiotics. When symptoms persist
and urine cultures are negative, a woman may
seek further evaluation. But the condition is
so variable that it may take two or more years
before she receives a proper diagnosis and referral
to a urologist.
Diagnosis by deciding what it’s
Unlike a urinary tract infection, interstitial
cystitis cannot be diagnosed with a simple urinalysis
or urine culture. Rather, it’s a diagnosis
of exclusion, which means that a clinician — usually
a urologist or gynecologist — will first
take a thorough history and then perform tests
designed to rule out other conditions. These
include infection, bladder stones, bladder cancer,
kidney disease, multiple sclerosis, endometriosis,
and sexually transmitted diseases.
The next step is a procedure called cystoscopy
with hydrodistension, which is performed under
general anesthesia. The clinician inserts a fiber-optic
tube through the urethra and into the bladder.
The bladder is then filled beyond its usual capacity
with liquid or gas to stretch it and allow a
closer view of the bladder lining.
The most common sign of interstitial cystitis
is red pinpoint spots of blood (glomerulations)
covering much of the bladder wall surface (see
below). Sometimes there are scars or lesions
called Hunner’s ulcers, accompanied by
low bladder capacity due to tissue stiffening
signs of interstitial cystitis
In most cases of interstitial cystitis,
tiny hemorrhages (glomerulations) on the
inside wall of the bladder (left) are visible
during cystoscopy with hydrodistention,
a diagnostic procedure. A normal bladder
(right) shows no bleeding.
Photographs courtesy of Kathy G. Niknejad,
During cystoscopy, the clinician may take a
biopsy (tissue sample) of the bladder to rule
out bladder cancer and look for evidence of the
mast cells that indicate an allergic reaction
or autoimmune response. Interestingly, distending
the bladder can itself be therapeutic. About
half of patients get some relief for about three
months after the procedure.
wall anatomy and interstitial cystitis
One possible cause of interstitial cystitis
is a defect in the layer of mucus (mucin
layer) that protects the cells lining the
bladder (the urothelium). This permits
harmful substances to seep through and
inflame the tissue. Irritated blood vessels
produce areas of pinpoint bleeding (glomerulations)
in the bladder lining.
Treating interstitial cystitis
Treatment (see chart) is aimed at relieving
pain and reducing inflammation. The two main
approaches are oral medications and bladder instillations — drugs
that are introduced into the bladder by catheter
and held for 15 minutes. The procedure usually
takes place in a physician’s office, but
in some cases these drugs can be self-administered
treatments for interstitial cystitis
at low doses, tricyclic antidepressants
relax the bladder and interfere with the
release of neurochemicals that can cause
bladder pain and inflammation. They may
also improve sleep. Amitriptyline is the
medication most commonly prescribed for
polysulfate sodium (Elmiron)
is the only oral drug approved by the FDA
specifically for interstitial cystitis.
It improves the bladder lining, making
it less leaky and therefore less inflamed
and painful. The full effect may take three
to six months. Side effects, which are
rare, include reversible hair loss, diarrhea,
nausea, and rash.
such as hydroxyzine (Atarax, Vistaril)
interfere with the mast cells’ release
of histamine, helping to relieve bladder
inflammation and pain, urinary frequency,
and nighttime voiding. Because antihistamines
can cause drowsiness, they are usually
best taken at bedtime.
anti-inflammatory drugs (aspirin, naproxen
sodium, ibuprofen) and acetaminophen can
help relieve mild to moderate pain. Check
with your clinician about possible side
effects of long-term use of these over-the-counter
medications. Opioid analgesics, such as
oxycodone or hydrocodone combined with
acetaminophen, may be used to treat severe
pain when other forms of therapy have not
worked. Because these medications can be
addictive, anyone taking them should be
followed carefully, for example, at a pain
is the only FDA-approved bladder instillation
drug for interstitial cystitis. It helps
relax the bladder and alleviate pain and
inflammation. Some research suggests that
more than half of patients improve after
six weeks of once-a-week treatments. It
may cause a burning sensation during and
after instillation and can cause a garlicky
odor on the skin and breath for up to three
days following treatment. DMSO is sometimes
combined with other medications.
Hyaluronic acid (Cystistat)
instillation drugs are still under study
and not yet widely available. BCG is a
bacterium that is thought to block inflammation
and stimulate a protective immune response.
Cystistat may help repair the bladder lining.
No single treatment alleviates all symptoms,
and some may stop working over time, so finding
what works is often a matter of trial and error.
The good news is that in 50% of cases, the disease
will disappear on its own.
Because interstitial cystitis can be both physically
and psychologically disabling, people who have
it often need help coping with its many effects.
One option is individual psychotherapy, especially
if depression or anxiety is a problem. Another
is a support group, which gives people a chance
to talk with others who are in a similar situation.
Also, learning as much as possible about interstitial
cystitis may help a woman attain some sense of
control over her condition.
In a procedure called transcutaneous electrical
nerve stimulation (TENS), pain pathways are modified
by a device worn on the body. The device produces
electrical impulses, which pass through electrodes
that are attached to the body with small adherent
pads. Patients can adjust the level of electrical
stimulation themselves. Good results have been
reported in about one-quarter of those using
An implantable device called InterStim directly
stimulates the sacral nerve in the lower back.
Already approved for treating bladder control
problems, it’s now under study as a potential
treatment for interstitial cystitis pain.
Some people report that stress reduction, exercise,
biofeedback, or warm tub baths improve their
symptoms, but no research has evaluated the effectiveness
of these strategies. Bladder training — that
is, learning to urinate only at specific times
(despite the urge to go) — can help reduce
urinary frequency. There’s no scientific
evidence linking diet to interstitial cystitis,
but many people believe that their symptoms are
made worse by tomatoes, chocolate, caffeine,
alcohol, and beverages that acidify the urine,
such as cranberry juice.
Surgery is usually a last resort and undertaken
only when the pain is crippling. The surgical
procedure typically involves removal of the bladder
and the creation of a new one (a neobladder)
using intestinal tissue. Most people need to
catheterize the neobladder themselves in order
to empty it.
Many possible causes
No one knows the exact cause of interstitial
cystitis. One theory is that it’s caused
by infection with an undiscovered agent, such
as a virus. Another is that it’s an autoimmune
disorder set in motion by a bladder infection;
cells that normally fight infection attack the
bladder lining instead, causing pain, redness,
and swelling (inflammation). Yet another theory
is that mast cells normally involved in allergic
responses release histamine into the bladder.
Some research has focused on defects in the
layer of protective mucus that lines the bladder,
which causes so-called leaky bladder syndrome.
A leaky bladder allows harmful substances in
the urine to leak through the mucous layer and
inflame or ulcerate tissue below.
Another idea is that sensory nerves within the
bladder “turn on” and spur the release
of inflammatory substances. Because interstitial
cystitis is mainly a woman’s disease, researchers
think that hormones possibly contribute.
Although interstitial cystitis is still poorly
understood, researchers and clinicians know a
lot more about it than they did just a few years
ago. That’s led to several developments.
Scientists seeking a diagnostic test have begun
to identify substances unique to the urine of
interstitial cystitis patients. They’ve
also found that certain factors required for
healthy cell growth appear to be missing from
the urine, a discovery that could lead to a new
Researchers just completed a nationwide trial
of resiniferatoxin (RTX) as a bladder instillation
to treat interstitial cystitis. RTX is similar
to capsaicin, the extract of chili peppers that
has proven useful in treating arthritis pain.
It is thought to block the sensory nerves in
the bladder that contribute to pain and urinary
urgency and frequency. (For more information
about the trial, visit www.clinicaltrials.gov/ct/gui/show/NCT00056251.)
The National Institutes of Health has earmarked
$5 million to fund new research into the causes
and development of interstitial cystitis. It
has also awarded nearly $4 million for a center
at the University of California at Los Angeles
that will study interstitial cystitis and other
disorders that affect mainly women.
An international symposium of experts who investigate
and treat interstitial cystitis met in October
2003 to discuss their latest findings. (For more
information about the event, visit www.niddk.nih.gov/fund/other/ic.)
Interstitial Cystitis Association
110 Washington St., Suite 340
Rockville, MD 20850
800-435-7422 (toll free)
American Urogynecologic Society
2025 M St. NW., Suite 800
Washington, DC 20036
National Institute of Diabetes and
Digestive and Kidney Diseases
3 Information Way
Bethesda, MD 20892
800-891-5390 (toll free)