INCONTINENCE, Leaking, Dripping, etc. - Advanced Prostate...

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INCONTINENCE, Leaking, Dripping, etc.

Johnson411 profile image
13 Replies

INCONTINENCE - Does anyone have an artificial urinary sphincter (AUS)? If so please share your thoughts, experience, etc. Thank you.

Dx 6/21, G9, TURP 7/21, EBRT 44 doses 9-10/21, perineural and intraductal invasion. Currently on Zytiga, Lupron, etc. I have been experiencing worsening leakage, dripping, and occasional complete incontinence. Wake up 5X per night, and use about 10 pads per day. I am 10 months since TURP and have numerous cystoscopies, and urodynamic studies, which indicate leakage during. There is scar tissue in the urethra near the remaining prostrate. Appreciate your thoughts. All the best, just not all at once.

David

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Johnson411
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13 Replies
Echotango51 profile image
Echotango51

Hi Johnson 411I had a AUS implant [AMS 800] in 8/2018. This was the best thing I have done since I was DX in 12/13. I had the surgery and leaked like a sieve . I used 5 to 7 pads a day, after 5 years I was done with the leaking. If I had a dollar for every kegel I did, I would by twitter. I still use a small guard just in case when I go out. If I pick up something heavy it will leak a little. When I’m home in the yard I don’t use anything. I don’t let my bladder get to full, it will come out at a small stream. I should have had the implant done much sooner.

Good luck

Echotango51

Johnson411 profile image
Johnson411 in reply to Echotango51

Thank you! Very helpful in my internal debate.

Echotango51 profile image
Echotango51 in reply to Johnson411

I hope my reply helps. You shouldn’t have to have that kind of leakage , by the way , anything over 25 lbs , my wife picks it up.

Break60 profile image
Break60 in reply to Echotango51

I’m leaking like crazy a month after I had a cystoscopy to remove a piece of clamp from my bladder which apparently traveled there nine years after my 2013 RP. It was causing UTIs and I was leaking but not as bad as now.

I’m going to see the uro who did the cystoscopy and discuss the AUS since it was so successful for you. See my profile for my Pca history.

jhartdo profile image
jhartdo

I am getting one in three weeks. My PCP also had one and says it is the best surgery he ever had. I have a bit of bladder spasticity, so I take 10 mg oxybutynin.

RS265 profile image
RS265

Hi Johnson411, I had complete incontinence post RP and so had an AMS800 implanted in June 2016 and it simply works. It will leak if you distort the mechanical seal through pressure on the perineal area,I fly long haul (15hrs+) every other month, ski 50+ days/yr, do regular reformer pilates classes and mountain bike. I was told to expect a revision surgery at 5 years due to cycling friction on the perineal area but hasn't been needed, yet. Recently it has failed when I used a conventional bike seat but it remains sound on a split saddle such as the Selle Hell. Would also fail if I rode horses. 😀

My uro was paranoid on infection control.

London441 profile image
London441

I had one installed a year ago. I liken it to a hip replacement, which I also have. You put it off, then when you finally get it you wonder why you didn’t do it long ago.

AUS is the last stop on the heavy incontinence train, and I couldn’t be more grateful for its existence. Anyone who’s dealt with heavy incontinence knows how miserable, uncomfortable, smelly and distracting it is. The AUS works great and couldn’t be easier to use.

Istomin profile image
Istomin

I agree with all the comments above. Severe incontinence after prostatectomy. I had the AUS installed at MSK last fall (delay b/c of the pandemic) and it’s a life changer. Don’t use a pad most of the time. If I go out, I’ll put in the thinnest Tena model and it works all day. My recommendation would be to go with a surgeon who has extensive experience and not one who does the procedure on occasion among many other things.

Wahoo_ profile image
Wahoo_

Recovery time?

j-o-h-n profile image
j-o-h-n

Whatdoyouknow?.....A Johnson talking about his johnson................

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/05/2022 10:24 PM DST

Dlanghorne profile image
Dlanghorne

Yes, I had 5-6 pads a day since Prostatectomy in Jan 2019. Finally got Artificial Sphincter in Jan 2021. Works great with one pad that I can sometimes leave in and sleep with at night.It's a little awkward to use BUT does work.

Timberjack69 profile image
Timberjack69

I had an RP in 2018 and was totally after surgery. Had a sling fitted with surgery which worked okay but for some reason was uncomfortable. 8 months later I had an AUS fitted and has changed my life. I were the smallest pad available, Men Size 0. If I intend doing heavy work or lifting I make a point of emptying my bladder first. Its not perfect but for me it was life changing.

cjgbsg profile image
cjgbsg

Johnson, I had my RP 4 years ago and have experience incontinence ever since. I tried all the remedies my urologist could recommend with little to no success. In Sept last year I had a sling inserted and that didn't work, I think it made my problem worse. Then he suggested the AUS and Jan of this year I had the implant. I now con do whatever I want without the worry of leakage. I wear a thin pad mostly for peace of mind as it never get wet after wearing one all day. I wish I had this implant done immediately after my RP and I would not have had to go through the incontinence. If you have not already had this surgery I would encourage you to go forward and have the implant.

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