Quick bit of history – diagnosed with Gleason 9, PSA 22 T3a N1 M0 and had Da Vinci surgery Jan 2017. Positive margins on the bladder neck and one lymph node with cancer, so straight on to Bicalutamide and adjuvant radiotherapy on bladder neck and lymph node sites. PSA been <0.003 ever since.
And now on to the lasting side effects of the treatment! Lymphodeama (mainly left leg), slight residual breast swelling, reduction of penis size, fluctuating libido and… variable incontinence. And this is what I am wanting some info on.
The incontinence takes two forms – the first is sudden leaks, a general urethra emptying moment. This normally happens when I’m sitting cross legged or on uncomfortable cramping chairs, and I have decided it is down to pressure on the perineum thus pushing the remaining sphincter valve. Just a guess though. It’s something I’ll have to live with.
My big concern is incontinence when getting sexually aroused. The moment I start to feel turned on, aroused, keen, my urethra lets go. Repeatedly. This REALLY puts the damper on any sexual activity. Annoyingly, I can now achieve full erections and ED has been sorted, but libido is non-existent as I know what happens should I get even an aroused mind. It’s that instant.
I have spoken about with my urologist, who has said it is Climacturia and there is no cure. It’s not. Climacturia is when urine fire backwards into the bladder at the point of ejaculation. That is NOT my issue. I can get aroused and climax when lying (relaxed?!) on my back with no leakage whatsoever, but any other position results in huge leakage.
So… over to you, wealth of knowledge. Any guesses? And perhaps more to the point, can anyone recommend another urologist I could speak with (privately if necessary) who would be willing to apply some listening to the situation? If so, please do message me, I would be most grateful.
Thanks for reading, and I wish you all the best with your own journeys.