I had another urology appointment at the beginning of December. This time with a doctor at the university. The hope was that he would be more familiar with my particular situation. And he was, more than I could have hoped: he actually knew of my original surgeon, had worked in the OR with him, and even shared a few beers (I assume after a medical conference or something). He knew the basics about the procedure I had done.
Prior to the doctor appointment, I had a voiding cystogram and retrograde urethrogram. Neither was as bad as I thought it was going to be. The techs at the university's hospital were... well, more professional than the small-town Catholic hospital where I had the last VCUG done. The last time was humiliating and frightening; the techs did not hide their disgust well and made derogatory comments about my surgery. This time around, the techs were respectful and listened to what I had to say regarding catheter size (surgeon's orders: pediatric sizes only). They also, rather than forcing the catheter when they couldn't navigate the sharp turn between native and neo-urethra, let me put it through.
I'm only just now getting the official results back from the tests, though I could see well enough what's going on from the live monitor feed during the test. The last couple inches of my urethra is very tiny and constricted, it didn't actually show up on imaging--not enough contrast dye? The next section is very, very large. There isn't a Fr size large enough to measure it. Then, there's my native urethra, which is normal. Upon urination, the enlarged neo-urethra and native urethra swell dramatically due to the back-pressure the constricted portion of the urethra exerts on the entire system. I'm not entirely sure what the ramifications of that are, other than it's miserably difficult and painful to pee and I could see how back-flow like that could heighten the risks of a UTI (which I get, frequently).
The aim of the tests was only to investigate the urethra; at this point, my urgency and frequency isn't being looked at. The doctors are sort of hoping that resolving one will spontaneously resolve the other.
When I left the doctor's office the understanding was that he would report the findings to my surgeon, they would discuss, and he would contact me with a plan. I haven't heard back yet.
The one thing that leaves me a little less than hopeful was the first solution this doctor proposed: to cut (split) the narrowed portion of my urethra until it reaches the widened portion. While this would technically get rid of the constriction problem, in order to do that my penis would be split along its entire length (sorry guys, that is graphic). That is
terrifying. I do not know if I could mentally handle that. That also seems like a very last-resort option, so I am wondering why he suggested it first. I am starting to suspect why, now: I asked him if dilating (stretching) the narrowed portion with progressively larger catheters would help. He didn't say no, but he also didn't sound enthusiastic about it. He gave me catheters to use as a 'temporary fix.' I'm finding that, while the dilation helps very temporarily, the trauma to the urethra and resulting inflammation makes it not worth it. The inflammation cancels out the dilation effect. The dilation also hurts and I bleed (minimally). I'm perhaps not doing myself any favors by doing it, just causing more damage. I feel like I'm in between a rock and a hard place. I'm just getting used to the painful urination and burning. I'm really very frustrated right now; I think that's why I'm writing this.
If the above didn't quite make sense, more context is here:
http://www.incontinentsupport.org/phpBB3/viewtopic.php?f=12&t=1505&p=13028#p13028Thanks for listening.