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

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.

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bwjb | @bwjb | May 12, 2025
In reply to @grandpun "Hi "bwj", I didn't see a reply to your one comment, " Instead I get a..." + (show)
Profile picture for grandpun @grandpun

Hi "bwj",
I didn't see a reply to your one comment, " Instead I get a squirt, generally a spray often missing the toilet bowl, followed by 5 or so seconds of a slow stream before it peters out. I have to pump the device several cycles in this manner to feel that I have emptied."
That's pretty much how I started out. And now maybe you have your own technique.
Anyway, now I've learned to do one good squeeze with everything well aimed to hit the bowl; then repeated squeezes to continue peeing like a race horse; then do some more squeezes till flow is done. I give it a couple seconds or more to be sure I'm empty and that's it. Done.
Hope you're doing well and enjoying more freedom from the bathroom & pads.

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Hi Grandpun,

I'm glad your AUS is working well.

I've had a severe setback with mine. I developed a "rectourethral fistula" where my urine flows into my rectum so I have frequent watery diarrhea. I'm still following up with the doctor that installed the AUS to see what can be done to fix the problem.

Regards,

bwjb

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david1643 | @david1643 | 2 days ago
In reply to @ritanana "Thank you all for sharing. I've been 14 months since surgery and am mostly incontinent. Sleeping..." + (show)
Profile picture for LuvTN25 @ritanana

Thank you all for sharing. I've been 14 months since surgery and am mostly incontinent. Sleeping is pretty OK.
My urologist and my cousin's both suggested implanting an ASC. I've not yet met/spoken to my urologist's partner who performs the implantation, yet
I'm in middle of building a home and my wife was just diagnosed with a resurfacing of her breast cancer so, for next several months, lots of stress. I had planned to wait until June to move forward with ASC; but with recent wife's diagnosis; and the fact that her care will be entirely in my hands, I think I should wait until she's back to 'normal.' Thoughts?

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@ritanana
I am sorry to hear about your wife. It seems life has a way of getting in the way of what needs to be done. I hope all is well now for you and your wife.

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geno2853 | @geno2853 | 1 day ago
In reply to @smc24 "I lost both urinary sphincters resulting in no control whatsoever. Life was very unpleasant. About three..." + (show)
Profile picture for smc24 @smc24

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.

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@smc24 who did your AUS surgery? Also, any cyclists out there who had an AUS? Thanks.

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smc24 | @smc24 | 1 hour ago

Dr. Mathew Mellion. Indiana University Health, Methodist Hospital Indianapolis performed my AUS. He is very well known for the surgery.
Yes, I ride a bike frequently and have for years. But, I have changed to an unusual seat which puts all the pressure on the butt, like a chair, not on the crouch. I keep my bladder as empty as possible to available stress leakage. I wear a Depends, only for safety, not out of necessity.

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