"A razor in my bladder"

Interstitial cystitis causes excruciating pain -- but some doctors deny it even exists.


Nancy Evans
April 26, 1999 8:00PM (UTC)

Orthopedic surgeon Vicki Ratner was 32 and a third-year medical student
when the symptoms appeared: It felt like someone was holding a hot poker
inside her bladder. It felt like acid on an open wound. It felt, she says,
"like razor blades inside my bladder." She had a constant urge to urinate.
At first she thought it was a urinary tract infection, also known as
cystitis. She'd had them and knew that antibiotics brought fast relief. But
this time, the urine cultures came back negative and the antibiotics didn't
help. More tests showed nothing.

Persistent pain drove Ratner to see 10 urologists, two allergists and two
infectious disease specialists. She was sent home with a diagnosis of
stress, a referral to a psychiatrist and a recommendation that she quit
medical school and settle down to a more quiet life. Instead, she went to
the library, where she read an article about a disease she had never heard
of that, according to a recent report in the Journal of Urology, affects
700,000 Americans: interstitial cystitis (IC). Causes and treatment unknown.
Symptoms well known: urgency and frequency of urination, pain during urination and, in some cases, pain during and after sexual intercourse.

Advertisement:

Journal article in hand, Ratner returned to her original urologist and
asked for the necessary diagnostic test. After much argument, he performed
the test and, sure enough, Ratner had IC. Once diagnosed, she learned how
little is known about treatment and how little interest there was in
learning more. "I spent the last two years of medical school in intense,
unremitting pain and isolation. I thought I was the only one in the world
with this disease."

After contacting the National Institutes of Health, the Centers for
Disease Control and the American Urologic Association with no success, she
went to the media -- and things started to happen. She got a Manhattan news program to air a three-minute piece on IC, which prompted 3,000 letters -- mostly from women. "They all described the same symptoms, the same misdiagnosis and mistreatment by doctors," says Ratner.

In 1984 some of those patients joined Ratner to form the Interstitial
Cystitis Association,
a nonprofit patient advocacy group. Later that
year, Ratner appeared on "Good Morning America" and 10,000 letters came in to the ICA. In the 15 years since, ICA has organized support networks, testified in Congress and funded pilot research projects. It
publishes newsletters for patients and physicians and has co-sponsored (with
the NIH) a biennial reseach conference.

It's helping, but not fast enough for those who are suffering. Until 1987
not one penny of federal research money had been spent on IC. By 1990, $11
million was earmarked for IC and related research via NIH, but Ratner
thinks that because more than 90 percent of IC patients are women and it's
considered a rare disorder of post-menopausal women, it's not a priority.

"It's not rare," says Ratner, and in fact more than 25 percent of patients
are under age 30. And the numbers -- at least 700,000 Americans (compared to 20,000 with hemophilia and 30,000 with cystic fibrosis) -- warrant more attention.

That's where sexual politics comes in. As late as 1985, the leading urology
text described IC as "a disease that ... may represent the end stage of a
bladder that has been made irritable by emotional disturbance ... A pathway
for the discharge of unconscious hatreds." That text has been changed, but
some women say that because 98 percent of urologists are men, this disease
that affects women (90 percent of patients are female) is not getting
enough attention. One women wrote to the ICA: "I am a psychotherapist who
has yet to be diagnosed with this disease but I have every symptom
described. I have been dismissed and ignored. I have been chastised for not
emptying my bladder and told it is my fault. I have been told it must be a
problem in my marriage, and the doctor said he had no patience for
psychosomatic disorders! If I did not have an infection, then it must be in
my head. 'Drink lots of cranberry juice' I was told."

Advertisement:

Once a patient can get around doctors who refuse to take the symptoms
seriously, the next problem is ruling out ordinary cystitis, endometriosis
and sexually transmitted diseases. Then the urologist uses a cystoscope to
look inside the bladder; if the patient has IC it will reveal tiny hemorrhages in
the bladder lining.

Once diagnosed, appropriate treatment is a challenge, since there's no
one-size-fits-all answer. One drug, Elmiron, approved by the FDA in late 1996, is believed to restore a damaged, thin or "leaky" bladder surface. "It's not a cure and it's only effective for some patients," says Ratner.

Changes in diet and lifestyle have shown some effect. Avoiding alcohol,
caffeine, artificial sweeteners, acidic and spicy foods and tobacco
relieves symptoms in some patients. And stress reduction, visualization,
gentle exercise, biofeedback and bladder retraining have also helped some
sufferers.

But still, there is no cure, and researchers are still testing theories that
IC is caused by an autoimmune response, allergic reactions, defects in
bladder lining or toxins in the urine, and that it may sometimes be associated with
chronic fibromyalgia, endometriosis, irritable bowel syndrome or lupus.

Advertisement:

Though the causes are unknown, the pain is real. One patient wrote to the
ICA: "Sometimes I wish I was dead because the misery and pain are
unbearable. If I had cancer I would know sooner or later that I would be
either in remission or dead, but with IC I only suffer day after day
without any hope of getting better ... So many times I have thought of
killing myself to get out of the pain and mental suffering caused by this
disease."

Today Dr. Vicki Ratner has two careers: one as a full-time orthopedic
surgeon in the Kaiser Permanente system, the other as president of the ICA,
where she pushes an agenda of research and education -- of patients and
physicians. "Until science has all the answers, patients with this disease
must have treatment for pain," she says. "Doctors need to know that IC is a
real condition that can be devastating ... the pain can be as severe as
cancer pain ... and patients need to find a doctor who will listen, a support
group and information about treatment options."


Nancy Evans

MORE FROM Nancy Evans

BROWSE SALON.COM
COMPLETELY AD FREE,
FOR THE NEXT HOUR

Read Now, Pay Later - no upfront
registration for 1-Hour Access

Click Here
7-Day Access and Monthly
Subscriptions also available
No tracking or personal data collection
beyond name and email address

•••





Fearless journalism
in your inbox every day

Sign up for our free newsletter

• • •