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."

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.

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."