I While in graduate school, in 1992, I was incorrectly diagnosed as having a non-specific prostate infection and put on Bactrim 3x daily for one year by the chief of Urology at KUMC. Of course, to my dismay, I received no relief after continuous antibiotic therapy. But that was just the beginning of my frustrating and, at times, infuriating journey towards treatment. I continued to suffer through increasingly acute and more frequent episodes until, several years later, I saw another physician at St. Luke’s in KCMO. He also thought it was a prostate problem. I was placed on several medications. But I developed a kidney stone due to the combination of Bactrim and Urised which resulted in the accumulation of insoluble particulates in my kidneys. The kidney stone (which was lodged in the right ureter) combined with my other “mysterious” pelvic floor/urinary tract disorder caused me unspeakable misery for nearly three months until the kidney stone was removed via lithotripsy. The urologist suggested that the removal of the kidney stone should “cure” my problem, but I knew that the kidney stone was just an additional misery and had nothing to do with my perineal pain.

My pelvic floor/bladder pain persisted. The next year I returned to the KU Urology Dept. The new head of the department ran the usual tests: negative for pathogens after routine urinalysis; prostate seemed unremarkable. Further test were ordered. A sonogram was performed on my prostate and other explorations and probings ensued. Nothing was found. Point-in-fact, the attending physician said that my prostate was actually as healthy as a male twenty years my junior. And while that little fact made me feel enormously proud of my prostate, it did nothing to alleviate the discomfort of experiencing the sensation of having a needle-sharp railroad spike, driven with a twenty pound sledge, pounded incessantly between my legs.

I returned for a follow-up visit a few weeks later and told the head of Urology at KU, who performed the aforementioned procedure, that I was still experiencing horrific pelvic floor pain. He seemed very vexed with me and suggested that I should seek psychiatric treatment as he could find nothing physically wrong with me. I responded that perhaps I should just see another physician instead. There is nothing more disheartening than having someone, to whom you’ve given your absolute trust, accusing you of fabricating a condition – especially, an illness which is very real and very distressing. Sometimes doctors compensate with arrogance for what they truly lack in competence.

I was then referred to another doctor. He was head of the Geriatric Urological Dept. at KUMED. I told him of my symptoms and of the failure of medical science to find the cause. He ran the usual test (testing for pathogens); did a prostate check (finding nothing of course). I felt like a lab rat having redundant experiments performed upon me with mindless monotony. I used to think pointless repetition was the proverbial definition of insanity – i.e. doing the same thing over and over again and expecting a different outcome. Later, frustrated with the predictable non-results, I did some research of my own on the internet; whereupon I came across the Interstitial Cystitis Association web site. The symptoms of IC they described were very much like my own. I believed I finally found a possible cause of my malady.

I then returned to my last doctor, my fourth one ( the last two didn‘t have a clue and the third one was a jerk), and I asked him about it. He informed me that IC was very rare and, in fact, is hardly ever found in men. He seemed very skeptical at first but he eventually suggested going inside with a cystoscope and performing a biopsy, explaining that it was the only way to know for sure. I dreaded the prospect, but I agreed because I wasn’t getting any better and the excruciating pain was making me contemplate the necessity of the continuation of my own life. The procedure was performed while I was under general anesthesia. The bladder was distended; photos were taken; the biopsy was performed. Shortly after, while I was still in recovery, the doctor came out with the photos and told my partner that it was one of the worst cases of Interstitial Cystitis in a male that he had ever seen. He remarked — no wonder the poor guy was in such terrible pain, and he added that he felt sorry for me. For my own part, I felt simultaneous relieved and justified in pursuing the cause of my affliction, albeit, at first, unsuccessfully, for more than five years through as many as four different urologists.

Yet, I was horrified to ultimately find out that there was very little currently that could be done to cure the disorder. It’s kind of like searching for a suspect who committed a horrible crime and, after years of tracking him down, the cops have to let him go unpunished because of an inability to bring him to justice. So that is where I am now. I’m sliding down a barbed wire fence and I’m finding no where to get off. Pain has become such a unwelcome companion that when it leaves unpredictably for a few hours, and even from time to time, for a few days, I am possessed by such raptures of relief that I feel compelled to rush about and get all of my affairs in order while I am temporarily unleashed from its familiar shackles. But all of my remissions are brief, and the unbearable persistence of pain in all of its indescribable manifestations of agony returns and I can do nothing but despair.

Boy, I wish I could have traded bladders with the first three doctors I visited. I bet they would have received an immediate boost of post-Medical School remedial education in Interstitial Cystitis real fast. Shared tragedy, disease and misfortune, sadly, seems to be the only recipe for instant empathy. So forget just feeling sorry for someone else. Sympathy is way over-rated. It’s too often simply a polite way of saying: I’m glad it’s not me. So, no Mr. Ex-President, and all of you various “well-meaning” people out there — you do “not” feel my pain! How could you unless you were in intractable agony nearly all of the time? And to all of those professionals in the Heath Care Business — especially the doctors, research scientists, and drug companies — what we need is a lot more altruism. It’s inhuman to think that a disease has to be contagious or a disorder widespread or that something has to be the “malady de jour” on CNN before somebody will lift a finger to help. You can’t play the ratings game with people’s lives. Help us find a cure. Sympathy alone wont get the job done. But lot more research dollars and far better educated doctors concerning this human tragedy just might ease our burden.

Yes, even if that progress advances in baby steps, it’s still a beginning — because anything is better than nothing. So what’s next?

Bud