Artificial urinary sphincter - not a rave review

Awe, Peter, I am so sorry you did not get an expected result : (. I hope somebody who had the same surgery and has experience with it will jump in this thread soon and have some answers. Is that device adjustable at all after it is put in place ? Since you stated that it needs just one pump and most need 2 or 3 it does suggest much faster opening and thus perhaps means (as you suspect) that valve is not tight enough.
Will you have follow-up with your surgeon soon ? Does he have any idea why is it happening and can it be adjusted to be perfect ? Can urge part be controlled with meds that somewhat relax bladder ?

Been many years since mine was activated, so my memory is a bit hazy on the effectiveness of the AUS early on. It is quite possible that it took a little while for mine to work at efficiently but I do remember that it was exactly what my urologist at the time called "The Gold Standard." Give the device and your body a little more time to acclimate to it. My interpretation of what's working says it may be better after a period of getting used to it. I do remember that if I let the liquid build up too much it was a real rush to make it to the bathroom! Give it about a month (maybe a little less time if it isn't doing even as well as now) and go back to your Doc and go through all the details--don't skip anything in talking with him. A final, long term fact you will have to keep in mind--it will not work forever. I had a double cuff done after 5 years and after another 5 years needed to do it again but the cancer had other thoughts so I'm on pads now. Good luck and best wishes--when my two worked, they were wonderful.

I have just posted my full experience on another thread:
https://connect.mayoclinic.org/comment/1355409/
I also posted about the mechanism of penis shortening after surgery. I am a retired doctor/hospitalist.

Last week I had my third AMS800 artificial urinary sphincter placed. They cannot increase the pressure in the balloon because it increases the risk of reducing blood flow and causing atrophy. What they can do is fit a longer cuff. My first one was 3.5cm which slowly became less effective. When they did the second surgery they found that there was atrophy of the urethra and they fitted a 5cm cuff in a different position. The tubing for the second one eventually migrated through the skin of the scrotum and had to be removed because of risk of infection. Nine days ago I had my third one placed. This time there was only room for a 4cm cuff, but it is high up against the bladder. Urine flow after surgery is very poor, which I think may be a good sign that it will work better. I like the idea of using two cuffs!

Thankyou.
I just got work (7am in the middle of Winter, which doesn't help) and urge incontinence was awful. I'm used to giving up & just peeing into the pad, but I can't do that now. So I'm left with the awful feeling of badly needing to pee, without being able to.
From what I've read, adjusting it is another surgery & probably another couple of weeks off work.
I see the surgeon again in a month, so see how I'm getting on. I don't want to seem ungrateful, but I'm not doing well at all.

3 of them? New nightmare unlocked.
I'll have a good look through that thread. Thankyou.

Peter, I am not well versed in the device, but I would think that your bladder needs time to adjust to fuller volumes. After all, you’ve been leaking constantly for over a year and your bladder is not used to being inflated by any volume of urine.
I think the feeling of needing to rush to the bathroom will slowly decrease in time. Right now, you are stretching those smooth muscle fibers in the bladder ( due to greater volume) which have surely contracted in the last year. I certainly couldn’t say how much time to give this, but a month or two more would not be unreasonable in my mind. Best,
Phil

Call your surgeon or regular urologist and ask if there are any pills that can lower urgency . I think I read on this forum of such pills existing < 3

PS: I found this by Googling : For lowering the feeling of urine urgency, medications like anticholinergics (oxybutynin, tolterodine, solifenacin, fesoterodine, darifenacin, trospium) and beta-3 adrenergic agonists (mirabegron) are commonly prescribed. These medications work by relaxing the bladder muscles, reducing the frequency and urgency of urination. Some anticholinergics are also available as patches or gels.

That makes a lot of sense. You're right. My bladder's had it easy for the last 10 months & has had the carefree 'pee where you like' lifestyle of a toddler.
I'll have to learn to ignore my bladder's whinings.

It's a bit like my legs. After a year of "taking it easy", I find walking very difficult because I've lost muscle mass through being bedridden for weeks at a time.

Yes. My physio gave me some bladder-relaxing pills when I started my ill-fated & ultimately unsuccessful pelvic floor training.
Thanks

Hi Peter, So sorry you’re getting poor results from the AUS
You didn’t mention but mine is the AUS 800. It’s a pretty standard piece.
You’re saying it only takes one light pump suggests to me that the ‘pressure’ in the cuff is too low. Sadly, my understanding is it’s not adjustable, only replacement.
For now, I agree with the advice of the other commenters to give it some time and your bladder time to adjust to ‘normal’ filling and urgency.
In the meantime, maybe look for another surgeon who has lots of experience in these devices and their installation. I hope you don’t take this wrong, but after the fact I found out my surgeon was also renowned for gender affirming surgery. So I think he was very experienced in this part of the body. It’s your call for sure.
Patience, pads, and good searching. My prayers for you in this.