Hope for Baffled Victims of Interstitial Cystitis

It can be agonizingly painful and embarrassing, jeopardizing careers, relationships, even sleep.

Though once considered a rare disease, 90,000 Americans--mostly women--suffer from it. And some say the number may be as high as 500,000.

Obtaining a diagnosis can prove frustrating, taking an average of 4 1/2 years, five doctors and a significant psychological toll.

The disease is interstitial cystitis, or IC, a debilitating bladder condition accompanied by a constant urge to urinate--sometimes as often as 60 times a day.

Glimmer of Hope

Even though there is no cure or single treatment that has proven universally effective, some patients and physicians see a glimmer of hope. They point to these developments:

--The growing numbers of researchers who are studying interstitial cystitis. In the last year, it has been the focus of several articles in medical journals, including a supplement to the journal Urology.

--In 1987, the National Institutes of Health awarded seven research grants totaling $1.2 million to study IC. In 1986, there were no NIH grants to study the disease.

--Patient information is more accessible, thanks to the Interstitial Cystitis Assn., which was founded by Dr. Vicki Ratner after she was diagnosed with the disease in 1984.

Yet experts still aren’t sure what causes the disease, first described in 1878 and thought to be extremely rare.

“It’s called interstitial cystitis because we think the disease does not just affect the surface of the bladder but the spaces between the cells (interstices) of the lining of the bladder,” said Dr. Samuel Spigelman, a Van Nuys urologist who is currently treating about 20 IC patients.

Some speculate the inside lining of the bladder is defective or missing entirely, he added. Other researchers theorize that some substance in the urine itself is harmful.

Still others believe the cause differs from person to person. “IC is not one disease,” said Dr. Larrian Gillespie, a Beverly Hills urologist. “It’s multiple metabolic diseases.”

The Typical Patient

Clinical observations and surveys are beginning to shed more light on what it’s like to live with the disorder. The median age of onset is 40. The typical patient, Spigelman said, has to urinate two or three times an hour, and get up four or five times during the night.

Their lives can be grim indeed, according to a 1987 survey conducted by the Washington-based Urban Institute. Half of patients are unable to work full time, said Ratner, and of those, many are unable to work at all.

Suicidal thoughts are three or four times more common among IC sufferers than in the general population. “Painful intercourse affects 63%, and many of those are unable to have it at all,” said Ratner, an orthopedic resident at Montefiore Medical Center, New York.

Those with interstitial cystitis also score quality of life lower than aged-matched female kidney dialysis patients. And that, said Ratner, “says a lot.”

Particularly distressing to sufferers, she said, are physicians who suggest the problem is psychological. Ratner recalled the advice one doctor gave her: “ ‘Maybe you should quit medical school. Maybe you need a new boyfriend. Why don’t you get married?’ ”

If the disease is suspected, the Interstitial Cystitis Assn. suggests a urine culture be taken to determine if a bacterial infection is present and rule out other diseases. If no infection or diseases are found, the association recommends a cystoscopy (bladder examination with a special instrument) be done.

A procedure known as hydro-distention, in which the bladder is stretched by filling it with water, combined with cystoscopy is the only sure way to detect the tiny hemorrhages on the bladder wall that point to the disease, experts say.

Once diagnosed, oral medications are often prescribed. These include anti-inflammatory drugs, anti-spasmodics, antihistamines and muscle relaxants. Medications such as DMSO (Dimethyl sulfoxide), FDA-approved for treatment of interstitial cystitis, or clorpactin WCS-90 (oxychlorosene sodium) are sometimes instilled directly into the bladder.

Other Studies

Other options are under study. A type of laser commonly used to treat bladder cancer and venereal warts sometimes proves helpful, said Dr. Allan Shanberg, a clinical professor of surgery-urology at UC Irvine Medical School and director of the Reider Laser Center at Memorial Medical Center of Long Beach.

Use of transcutaneous electrical nerve stimulation can alleviate symptoms, too, according to a Swedish report.

Another drug, sodium pentosanpolysulfate (Elmiron), not approved by the FDA but under investigation at five centers, will eventually help 40% to 50% of patients, said Dr. C. Lowell Parsons, an associate professor of surgery/urology at the UC San Diego School of Medicine.

Dietary therapy is suggested by Gillespie, who believes most IC sufferers have an acquired inability to metabolize four amino acids: tryptophan, tyrosine, tyramine and phenylalanine. She recommends avoiding foods containing high amounts of those amino acids, including avocados, bananas, beer, nuts, onions, raisins, chocolate, mayonnaise and yogurt.

Other urologists say diet may play a role, but don’t believe patients need to eliminate so many foods. “There’s no data that shows diet therapy works,” said Dr. Philip Hanno, an associate professor of urology at the University of Pennsylvania. “There’s no proven benefit to going on a strict diet but it’s only common sense to avoid foods that make your symptoms flare up.”

Diet, Shanberg said, “may be important in controlling the symptoms. “But I don’t think there’s any data that it’s important in causing or curing (IC).”

Surgery is a last resort, said Hanno, needed by less than 10% of patients. Most commonly performed, he said, is a procedure in which most of the bladder is removed and part of the bowel is fashioned into a new “bladder.” If patients are selected appropriately, Hanno said, the success rate is more than 50%.

Susan Bolton, 36, said she decided to undergo total removal of her bladder in November after partial removal did not alleviate her symptoms. Before surgery, the Canyon Country resident said, she had tried many treatments, but nothing worked for long.

In fact, the pain can be so relentless, some patients are forced to alter or abandon career goals. “For me it felt like a knife in my bladder,” said Ratner, who expects to complete her residency in another year.

Works for Association

Sandi Bois, who had hoped to specialize in tax law after graduation from law school in 1983, instead serves as West Coast executive director of the Interstitial Cystitis Assn. “They understand,” she said.

As researchers debate treatment strategies, many patients have learned not to rely on a single approach. Linda Margulies, a 40-year-old Newhall teacher, has tried DMSO, acupuncture, homeopathic and Chinese medicines. She follows a strict diet, drinks “a gallon of water a day,” lost more than 40 pounds and walks an hour every day. Most recently, she received clorpactin treatment. “I’m almost symptom-free,” she said.

Some patients go into remission, but such relief is unpredictable. Meanwhile, as they wait for better treatment options and a cure, many also participate in support groups--now operating in 42 states.

Said Bois: “There is hope that was not here even two years ago, (but) the truth is we have a long battle ahead. The disease has remained a mystery for a century.”

For more information, write the Interstitial Cystitis Assn., P.O. Box 151323, San Diego, Calif. 92115, or P.O. Box 1553, Madison Square Station, New York, N.Y. 10159. Information on area support groups: (714) 495-6017 or (818) 990-7653.