In 1983, as a third year medical student, I came down with severe suprapubic pressure, urinary urgency, frequency and burning pain in my bladder. The pain felt like a lit match in my urethra. I was barely able to function, and found it almost impossible to concentrate. I assumed I had a UTI, but a complete work-up was negative and antibiotics failed to reduce the symptoms. In search of a diagnosis and relief from the severity of the symptoms, I sought help from one urologist after another—a total of 14. Many told me that the tests were negative and that there was nothing they could do for me. Others suggested that I was not cut out to be a doctor and that I should drop out of medical school, get married, and settle down into a more traditional lifestyle. I spent the last 2 years of medical school in intense, unremitting pain and isolation, imagining that I was the only one in the world with this disease.

Ultimately I made the diagnosis myself. While researching the problem in my medical school library (using Index Medicus at that time), I came across a footnote. It was almost 11 p.m., I was exhausted and ready to quit, the library was about to close. With little energy left after 2 days of searching, I pushed myself to stay, and to my amazement, that footnote led me to an article that described my case exactly. It was entitled “Early Interstitial Cystitis”, published in 1978 by Ed Messing and Thomas Stamey, both from Stanford University Medical Center [1]. I was told by the chief resident of urology at my medical center at that time not to ‘hang my hat’ on just one article. It’s a good thing I did.

Since my bladder looked normal during a routine cystoscopic procedure in the office, it took many months of convincing the urologist at my medical center to consider a cystoscopy under general anesthesia. The procedure was eventually done, according to the recommendations in the article I had found. The diagnosis was finally made based on numerous glomerulations seen on second distention of the bladder. (I realize that this does not necessarily meet today’s criteria, but back in 1984 it did). For me, it was an enormous relief just to know that there was a name for what I was suffering from.

Prior to the mid-1980’s, Interstitial Cystitis (IC) could still be found in the psychosomatic chapter on urologic conditions, described as a rare psychosomatic disorder which “may represent the end stage of a bladder that has been made irritable by emotional disturbances… a pathway for the discharge of unconscious hatred” [2]. In 1986, when the new edition of Campbell’s Urology was published, IC was acknowledged as a real disease. The section on IC in the chapter on psychosomatic illness was removed, in fact the entire chapter was removed, prompted by a letter I had written in 1985 to the editors of Campbell’s Urology.

Two weeks after we met, I was invited to be interviewed by ABC’s Good Morning America, a very popular national morning show. Dr. Phil Hanno joined me. On the basis of a 5 min interview, the ICA received a response of over 10,000 letters during the first week alone. Over the ensuing 3 months, the ICA received over 100,000 letters. It was the largest phone response that “Good Morning America” had ever received, and they invited Dr. Hanno and me to be interviewed again 6 months later. This interview put the ICA “on the map.”