Interstitial Cystitis: Disabling Bladder Condition

by Food and Drug Administration (FDA)

The woman knew she was going to be fired from her job. Since her 20s, this insurance firm middle manager has suffered from interstitial cystitis (IC), an inflammatory disease of the bladder wall.

The chief symptoms Marsha (not her real name) has are a smaller than normal bladder capacity, urgent and frequent urination, feelings of pressure and pain around the bladder and in the pelvic area, and painful sexual intercourse. Now 46 years old, she has coped with these symptoms fairly well until recently, when they have worsened. On some days, Marsha is in such agony that she can barely walk.

Though sympathetic at first, Marsha's supervisor became impatient with her frequent bouts of pain and trips to the bathroom, as well as time lost from sick days and doctor's appointments, even though she's made up every minute. When she started to miss policy meetings, Marsha began to get indications that she would be fired. Her boss would comment that she couldn't know what was going on because, "You aren't always here."

Finally, when Marsha needed to urinate every 20 minutes at work and 10 times during the night, leaving her exhausted and depressed in the morning, she became so fearful of being asked to leave that she decided to retire on disability instead. She hopes to return to her job when she feels better, but so far it hasn't been possible.

Marsha counts herself among the more fortunate of IC sufferers because she receives long-term disability benefits and has both Medicare and private medical insurance. Also, unlike many other women, whose marriages and relationships are put under severe stress by IC, Marsha is lucky to have a supportive husband.

Cause Elusive

No one knows what causes IC. It wasn't recognized as a disorder until about 20 years ago. In 1978, the Food and Drug Administration approved Rimso-50, a purified form of the industrial solvent dimethyl sulfoxide (DMSO), for symptomatic relief of IC. Before that, many patients were neither diagnosed nor treated.

Because physicians could find no organic cause, the prevailing medical opinion was that IC was a "hysterical female condition," even though at least 10 percent of cases are in men. Even Campbell's Urology, the definitive text of urologic diseases, stated as late as 1986 that IC was "daunting in its evasion of being understood. [It] may represent the end stage of a bladder that has been made irritable by emotional disturbance." The book further states that interstitial cystitis may be a pathway for the discharge of unconscious hatreds.

People with IC have had to put up with this type of disbelief for a long time. Kristene E. Whitmore, M.D., chairwoman of the Department of Urology, Philadelphia Graduate Hospital, Philadelphia, Pa., says, "The average number of doctors seen before diagnosis is five, and it takes three to five years to get that diagnosis."

When the columnist Ann Landers wrote about IC in 1987, she received 10,000 letters from patients or their families, relieved that the condition was finally being recognized. A 1987 study conducted by the Urban Institute in Washington, D.C., found that IC makes people so miserable that they contemplate suicide four times more often than the general population and that they rate their quality of life lower than those who undergo kidney dialysis. Nearly 30 percent of IC patients can't work full-time, according to the study.

Although no bacteria or fungi or viruses are found in patients' urine, many researchers believe it's possible that IC is caused by an infectious agent that hasn't yet been identified.

Researchers have also suggested it may be an autoimmune disorder of the bladder's connective tissue, in which the body's defense mechanisms against invading bacteria turn suddenly against healthy tissue. In some patients, special white blood cells called mast cells, which are associated with inflammation, are found within the bladder's mucous lining. Or, some scientists theorize that the disorder may be an allergic reaction, because many patients have a history of allergies.

Some women go into remission during pregnancy, while others get worse, suggesting that in some patients hormones may be involved. Complicating the picture, many women with IC also suffer from a variety of other conditions, such as irritable bowel syndrome, migraine headaches, fibromyalgia (chronic aching of the muscles, joints, and connective tissues), low back pain, and similar disorders.

One theory in favor at present holds that the inner lining of the bladder (the glycosaminoglycan or GAG layer) that protects the bladder wall from toxic effects of urine may be "leaky," allowing substances in the urine to penetrate the bladder wall and trigger IC symptoms. A California study found that 70 percent of IC patients they examined had a "leaky" bladder lining.

More likely, any or all of these factors may exist, leading many researchers to conclude that IC is a syndrome, or a collection of signs and symptoms, rather than a specific disease. Others, such as Whitmore, believe it's more than one disease and is different in every person.

Making a Diagnosis

Although there is no test that identifies IC, urologists rely on several criteria to make a diagnosis:

• Frequent and urgent urination, and pelvic or bladder pain, especially as the bladder is filling.
• Pinpoint hemorrhages that can often be seen on the bladder wall during cystoscopy (an examination of the bladder's interior with a long, lighted tube, performed under anesthesia). This is called nonulcerative IC, seen in about 95 percent of patients.
• Cracks, scars, and star-shaped sores called Hunner's ulcers that are found in the bladder wall in ulcerative IC. Bladder capacity is decreased because the usually elastic bladder walls become stiff and don't expand normally.

Because it's easier to define IC by what it isn't than by what it is, a diagnosis must rule out bacterial cystitis — the most common urinary tract infection — whose symptoms it most closely resembles. Bladder cancer, kidney stones, vaginitis, endometriosis, sexually transmitted diseases, and tuberculous and radiation cystitis, as well as prostate infections in men, are some other conditions that must be considered. Thus, interstitial cystitis becomes a diagnosis of exclusion.

Although about 10 times more women than men get IC, it's possible that men have been underdiagnosed. "We haven't been real sensitive in screening our prostatitis patients, so maybe more men have IC than we think," says Whitmore.

Symptoms usually begin between 20 and 50 years of age, but the average age of onset is 40. Some cases have been diagnosed in children. About 450,000 people in the United States are believed to have IC, but true numbers are hard to come by, because many cases are either undiagnosed or misdiagnosed. Although occasionally more than one member of a family has IC, the disorder is not believed to have a genetic component.

About the Author

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