*In 1992, my urologist asked if I would speak to a 16 year old and his family after they received the news that the young adult had been diagnosed as having a rather severe case of urethral stricture disease. The case was so severe that a cystoscope-guided dilitation with filiform and followers was attempted, and the filiform was unable to thread itself through the stricture, and into the bladder. (*I will elaborate more on this later) "Scott" was only the second person whom I had encountered besides myself who had a stricture. The other was a friend, and the subject of difficult urination came up after he complained of "dreading each and every trip to the bathroom", he then proceeded to tell me what a stricture was, and that he had been diagnosed at age 17. We compared notes, and our experiences were quite similar.
There are no accurate statistics of the percentage of the male population with the malady. The co-moderator of this forum goes to a prominent west-coast urologist, who informed him of two (other) current patients. My urologist, located near Philadelphia, Pennsylvania, once elaborated (after my not needing dilitation for almost three years - post urethrotomy) that he was somewhat out of practice with the filiform and followers. This leads me to believe that far less than a fraction of one percent of a general urologists practice is composed of stricture-related disorders. I know for a fact that he has over 9,000 active patients.
These observations lead me to the conclusion that for our own well-being, we should educate ourselves to the highest degree possible regarding all aspects of urology. You never know when your knowledge of your case will be necessary in procuring adequate treatment while away from home. Dealing with urinary tract infections has always been my key task health-wise. Yet there are some with the problem who have never had trouble with a UTI. We are each individual, with specific traits, requiring different approaches. The fact that there are a total of around twenty urological surgeons who specialize in urethral reconstruction serving an estimated population of 309 million does not lend confidence that there is enough of a market for a surgeon to be proficient in dealing with complex cases.
I cannot speak for all urologists in general, but mine was an advocate of the proactive approach with regards to my condition. I would often leave his office with a copy of the latest urology journal, or other pertinent medical publication (with the agreement that it would be returned within two weeks), and within two years of diagnosis, I had (literal) volumes of photocopied articles, a Tabor's Medical Encyclopedia, a Gray's Anatomy, and two books on urological nursing in the 20th Century. This information helped make sense of the decisions my urologist made. Furthermore, with the help of the nursing publications, I discovered methods for avoiding urinary infections, and methods of care important after each subsequent surgery. What it all boils down to is that we each must develop a system keyed to provide the optimum of care, as this will help minimize hospitalizations, and possibly surgeries.
* Returning to "Scott": When I met him, he had undergone an emergency suprapubic catheter insertion (a catheter and urinary drainage system inserted directly into the bladder) as a result of a stricture which could not be resolved by dilitation. He had the procedure performed in the ER of a local hospital, it was deemed necessary because it was thought that he was about to encounter a urinary reflux (due to the fact his bladder was so full). His stricture was thought to be nearly 4 centimeters in length, which is fairly long. Our urologist wanted him to go to one of the teaching hospitals in Philadelphia, but his parents were apprehensive, as their primary physician informed them that the problem could be dealt with adequately in a local setting. His exact words were "it's not open heart surgery".
I explained that (at that time) eleven years had passed since being diagnosed. I had undergone around forty - plus dilitations, two urethrotomies, a urethroplasty (failing at that very moment), one emergency dilitation (similar to his event), a suprapubic catheter failure, and that if I had it to do over, I would have searched for a specialist in strictures and their care. By that point in time, the scarring to my urethra was already substantial, and had I been given the option to seek out a surgeon/specialist at a teaching hospital, that my outcome would have been far different.
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