Interstitial Cystitis: An Introduction to the Problem

Abstract

Even for those of us who are experienced at saying a lot about a little, it is difficult to write an introductory chapter about a condition for which few specific diagnostic criteria have been established and for which there is no agreed pathophysiology, evaluation, or treatment. “Interstitial cystitis” (IC) is a term that is applied in different ways by different people to describe a constellation of symptoms and sometimes signs that some people group under the overall heading of “sensory disorders of the bladder and urethra”, while others prefer to use the inclusive term “the painful bladder” or “painful bladder syndrome” (PBS). When we were residents, interstitial cystitis implied a small capacity fibrotic bladder which had resulted from a panmural inflammation of unknown etiology. Once tuberculosis and carcinoma in situ had been ruled out, there was little to do except contemplate an augmentation cystoplasty for symptom relief. No one gave much thought to how the bladder got that way once the important “rule outs” were excluded, and no one gave much thought to whether there was a population of patients with a more moderate or milder form of the condition. Subsequently, it became obvious that there was a large number of adult patients, predominantly women, with a chronic, painful, and variably incapacitating disorder of the urinary bladder, a small percentage of whom developed this “end stage” bladder picture, but the rest of whom did not and who continued to complain bitterly of symptoms, albeit with some remissions and exacerbations, for which physician after physician had no logical explanation. In the United States, it was the efforts of such frustrated patients, and especially Dr. Vicki Ratner, then an orthopedic resident in New York City, which led to the formation of the Interstitial Cystitis Association (ICA). Within this group, it became readily apparent that common complaints included unsympathetic physicians, inordinate delays in diagnosis, and frequent misdiagnoses of a psychosomatic disorder in an anxious, neurotic, or psychoneurotic patient. The ICA was originally organized to educate patients and to serve as a support group, and has become an educational group, not only for patients, but for physicians who are unfamiliar with the disease. Largely through the educational efforts of the ICA, and through their very successful lobbying activities with Congress, more and more attention came to be focused upon IC. An initial interstitial cystitis working group was formed by Dr. Ratner and Drs. Gary Striker and Charles Rodgers of the National Institutes of Health in 1986, and a workshop, sponsored by the National Institute of Arthritis, Diabetes, Digestive and Kidney Diseases (NIDDK) was organized and held in August of 1987. The goals of the workshop, which might also serve as goals for any volume on IC, were outlined as follows: