Those with an artificial sphincter

Posted by peterj116 @peterj116, 10 hours ago

How difficult was it to learn to use?
I had another visit to the surgeon yesterday & showed him a spreadsheet from the last week, showing uncontrollable leakage of around 500ml per day. He didn't think that was a big deal (3 months post-op) and said that I'll just have to put up with it.

After 5 or 6 training sessions with PT, I still can't move my pelvic floor at all. He said he's never had a patient who can't exercise his pelvic floor muscles. Well, I can't. I can't be the only one in the world.

He's referred me to a "sphincter specialist" who will "assess" me.
I dread to think what that involves.
But I may be able to get one installed 9 months after surgery, rather than wait for a year of uncontrollable incontinence (can't see me living through a year of this).

But then he said that he doesn't know if I'll be able to manage the artificial sphincter - implying that I'm so stupid & uncoordinated, I won't be able to push a button.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

tuckerp | @tuckerp | 7 hours ago

not sure if I already mentioned but I use the bag with condom. I do everything I did prior except wear shorts. Its not without its complications but I have a life. Its been 5 years. I may look at the AUS but not convinced it offers any less complications.

gmul | @gmul | 5 hours ago

Peter,
Please check the early December thread: "Sling, or artificial sphincter". Lots of comments there.
Mine wasn't difficult to learn to and it is quite easy to use. It involves squeezing a bulb in your scrotum 3 or 4 times. It becomes natural.
I did not respond to pelvic floor therapy, despite years of trying.
Before the AUS install, I had to do an urodynamics test, administered by a specialist urology nurse. She filled my bladder to the max a couple times then measured the flow rate, among other things. Not habit forming. Also had to have a cystoscopy to check the bladder. Those could be the tests you will be getting.
Best of luck.

peterj116 | @peterj116 | 5 hours ago

Oh. Thankyou.
2 people in the history of the universe that can't control the pelvic floor.
That makes me feel a bit better.

I've read up on the urodynamics test & the cystoscopy.
No problem doing either of those, if I get a result.

Out of curiosity, have you ever been able stop your urine flow midstream at will?
I've never heard of such a thing & told him that pre-surgery.
He was astounded & is (probably) currently writing about me for a medical journal - in the Believe-It-Or-Not section.