Complex voiding dysfunction/external urethral sphincter problems
Hi everyone, 41m, first post here. If this is in the wrong group, please do let me know!
I have complex urinary problems due to a functional obstruction that no one has been able to diagnose. 16 years ago, I woke up with what I believe was a bladder infection/UTI; it took about 3 weeks to get me on the right antibiotic. Once the acute symptoms cleared, I was left with hesitancy, nocturia, a weaker stream, frequency, and urgency. Doctors–supposedly good ones–never found anything wrong with me, save for a little tightness in my urethra. (Not a stricture, not a BNO, not BPH.) I do feel something squeezing and not letting go all the way when voiding, which I believe to be a tight external urethral sphincter.
Since no one could diagnose me, I just lived with this for a long time. I was mostly functional with just annoying urinary symptoms. However, 2 years ago I learned about pelvic floor muscles and decided to explore this as a potential root cause. After trying pelvic floor PT, my symptoms changed for the first time in 14 years. The PT began working on my lower abdomen, and we believe she activated some muscle restrictions that had been latent all this time (as my body pushed through the obstruction). In turn, this has made my condition worse and unlivable.
Fast-forward to today: I've been working with an excellent PT for a year and have seen no change in my urinary symptoms or in my abdomen. We do not believe the abdominal issues are the primary cause, as they havent responded to PT, but their activation has made my symptoms worse. Further, my PT confirms that my pelvic floor muscles are not dysfunctional.
I've tried everything: meds, extensive PT, Botox injections into the external sphincter, with no results. Urodynamics testing showed nothing, and there's no psychological component here. I had 2 pudendal nerve blocks last summer: the first one actually improved my symptoms dramatically…for a few hours before wearing off. A subsequent block did nothing. I've had a hypogastric plexus block recently, and it does not seem to be helping.
So, I'm at a loss. What was once a livable annoyance has morphed into a life-destroying condition. I struggle to sleep and can no longer wear normal clothing due to the abdominal problems setting off retention that I never had before. I believe there is a functional obstruction involving my EUS but I don't know what else to do about it.
I've had a consult with Mayo Urology, but they haven't been sure what they can help with. I do have a note out to the urologist I've been consulting with to ask about coming in for multi-specialty testing.
While awaiting their response, can anyone recommend any doctors who might be interested in a case like this? Or any paths at all?