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Considering an Artificial Urinary Sphincter (AUS): Need advice
I had a prostatectomy in 2013, followed by radiation in 2013 and more radiation in 2024. My leaking has continued to worsen. My new urologist recommended that I consider an artificial urinary sphincter. He says he’s performed “a lot” of them. By chance, he was a resident 3 years ago, assisting one of my previous urologists. He completed a fellowship last year and is now back at the University of Alabama at Birmingham. He’s taken over my care from my previous urologist who retired last year.
My questions: I know would want a surgeon who has done a lot of them successfully. How should I investigate? If my doctor says he has done a lot, should I believe him? What is a lot? If he says he’s had a good success rate, should I believe him? What is a good success rate? I doubt he’s going to give me his client list. All I know to do is to ask around, see if anyone has had AUS, find out who they went to, and ask what their experience was. I can do that here in this forum, but does that mean I’d need to travel to another city? Thanks.
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I was rather surprised to hear that PFPT is a subspecialty within the world of physical therapy. "Many" postpartum women and elderly women have urinary continence issues (thus TV commercials for "Poise" and other similar thin pads). I first saw it mentioned right here on this blog. I thought "what...why didn't my urologist 'automatically' refer me for it?" I immediately called, and off I went. It was done in the outpatient physical therapy department of my hospital (separate building). They only had one PFPT therapist, but yep...it is a whole series of unusual, yet similar exercises to strengthen you pelvic floor muscles, several of which are quite small (you can "over do it" with too vigorous exercise). The therapist basically gave me a new perspective on what I already knew: From your diaphragm down, your entire abdominal cavity is one giant air chamber affected by your breathing (diaphragm moving up and down). The removal of your prostate causes a change in the pressure on your bladder as you breathe and move, and of course the radical prostatectomy removed your more important of two urinary sphincters. So, the PFPT therapist teaches you lifestyle changes, such as no more than 8 ounces of any beverage at one time, without rest period between. Hopefully you don't drink more until you urinate. You urinate every two hours whether you think you need to or not. In doing so, you are consciously training your one remaining, weaker urinary sphincter to "perform on command." You are retraining it to both hold and release urine. For the first many weeks post-op and doing your PFPT therapy, you must avoid caffeine and acidic beverages which are both irritants to your very angry post-op bladder. It was all a rather amazing discovery that this subspecialty therapy even exists, but then, the therapist told me that 90% of her patients are women with urinary continence issues, and of those about 50/50 postpartum moms, and elderly women. Ask your urologist for the referral. (S)he will know to whom to write the order. Believe me, your urologist has written many such referrals for PFPT. Good luck!
I'm following all comments about artificial valves. My incontinence is severe. I need to use pull-ups with a pad nested in the pull-up. I go through 1-2 pull-ups and 8-10 pads per day. It's gradually gotten worse over the past 9 years. Beginning this January, I had an un-passable kidney stone, stint removal, systoscopy, severe bladder bleeding, bladder cauterization of lesions and diagnosis of chronic radiation cystitis. I hope an artificial valve is in my future. I had HBOT mid summer and need another systoscopy to verify healing before considering a valve.
I'm interested in all comments and experiences with artificial valves. Thanks
@29modela
I had an AUS installed on June 4. On July 10, they activated it and I’ve been 100% continent since. I could soak a thick pad in two hours if I was busy.
The surgery doesn’t last long in my case I went in around 9 o’clock in the morning, they took me in at 10 to do the surgery and at 12:30 I was leaving.
The problem with the surgery is that they have to get to the urethra which is right in the perennial area so they open it up and you end up with stitches there. That makes it very difficult to sit down without a lot of pain for about two weeks. I found that rolling up a Thick towel and then shaping it into a U and sitting on that allow me to sit without pain. There is another opening in the stomach. Mine was about 2 inches wide. I barely noticed it, It never really hurt.
This was well worth it for me. Now I can travel without having to worry about bringing pads
@29modela That was me. I had a pad within a bigger pad for a while, too.
8-10 a day is worse than my 7 pads.
Definitely push for an AUS. As long as your dexterity is ok, so you can operate the pump & you don't have arthritis in your hands, the AUS will be of huge benefit.
@peterj116
Thanks for your positive comment. Did You have any issues with the installation or healing.
@jeffmarc
Thanks for your positive comments. I'm leaning towards getting one. Some good things come with sime pain. Thanks again.