Artificial sphincter: Was it difficult to learn how to use? Tps?

Posted by peterj116 @peterj116, Dec 18, 2024

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.

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.

REPLY

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.

REPLY

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.

REPLY

I lost both urinary sphincters resulting in no control whatsoever. Life was very unpleasant. About three years ago, I had an artificial urinary sphincter installed which was one of the best decisions I've ever made. A few days to get the hang of it, but now I can use it easily standing up or sitting down. It's easiest to use two hand since it want to slide around a little in the scrotum. I highly recommend you take that step. It was, and still is a very positive experience for me. There are more important things to worry about it.

REPLY

Could you tell me (if you can) detail about getting the hang of it?
Exactly what physical problems did you have?
I'm only 60 & quite mobile, so should have no problem reaching down & pressing a button - but he made me feel like a 95 year old with Parkinson's.

REPLY

"Out of curiosity, have you ever been able stop your urine flow midstream at will?"

Maybe when I was 22 and not 82. Can't remember. I'm sure others could report on this topic; especially those who have tried writing their names in the snow.

REPLY

I have an AUS, which works great. No, I cannot stop urine flow until the device releases all the pressure, usually about 30-45 seconds.
I have no physical restraints, but I'm careful to use a wide bicycle seat now and probably will stay away from a horse saddle. I don't ride horses, anyway.
I use the device easily without hardly thinking about it anymore. Two hands works best for me, one to squeeze the bulb and the other to keep the device from squirming around the the scrotum. Don't worry, it's easy, fast, painless and dependable.
I'm 73, got it about 3 years, ago. I'm very active with sports, life, etc. I wear a Depends, just to catch any little dribble and use one or two per day. Most of my non-AUS friends at my age say the dribble a little anyway under physical stress.

REPLY

Thanks for that.
I didn't think of it moving around. Can't they just weld it in? A couple of bolts, maybe?

REPLY

Peter. I went 2 years without bladder control after prostate cancer and removal before I found a Dr that put the AUS in me. Male sling surgery failed 1 year after prostate removal . My assessment was a consult and than a cystoscopy to check the urethra where it was sewed back up to check for scarring. After 1 night in hospital after surgery the catheter was removed. No lifting no mowing for 3 months. Soft chairs with cushions are your best friend.. Ice on groin/genitals off n on for few days after surgery. 6 weeks for AUS parts to heal inside body, than it was activated and you hold the 2 hoses and squeeze the pump . The bladder empties. Yes the incision from middle of scrotum to rectum is painful but it gets better . ( use more pads to keep incision dry . My incision got infected from urine leaking on it). 3 and a half years later I’m happy I did it. 1 thick pad a day . I have 2 friends in there late 70s who had AUS implanted this year. Both are happy and dry after 10to15 years wet.

REPLY
@lee61

Peter. I went 2 years without bladder control after prostate cancer and removal before I found a Dr that put the AUS in me. Male sling surgery failed 1 year after prostate removal . My assessment was a consult and than a cystoscopy to check the urethra where it was sewed back up to check for scarring. After 1 night in hospital after surgery the catheter was removed. No lifting no mowing for 3 months. Soft chairs with cushions are your best friend.. Ice on groin/genitals off n on for few days after surgery. 6 weeks for AUS parts to heal inside body, than it was activated and you hold the 2 hoses and squeeze the pump . The bladder empties. Yes the incision from middle of scrotum to rectum is painful but it gets better . ( use more pads to keep incision dry . My incision got infected from urine leaking on it). 3 and a half years later I’m happy I did it. 1 thick pad a day . I have 2 friends in there late 70s who had AUS implanted this year. Both are happy and dry after 10to15 years wet.

Jump to this post

2 years? You poor thing. I'm struggling after 3 months, I pee with every step. Over it.
Looks like I'll be assessed by another surgeon in 3 months. Hopefully.

Thanks for mentioning the incision problems. Did you use 2 pads, because leakage is a real problem at the moment.

REPLY
Please sign in or register to post a reply.