Anyone deal with pain post AUS 800 activation?

Posted by joe1001 @joe1001, Mar 17 6:34pm

I had my procedure in Jan ‘26 and 6 weeks later activation. Since activation I’ve experienced periodic severe pain in the penis and scrotal area when peeing. Tested for UTI came back negative. Dr indicates that after years of leakage the bladder may now be stressed due to urinary pressure build up due to the elimination of leakage and the urethra is not used to the increased flow which can irritate?
Patiently waiting for the plumbing to adjust, still only a month since activation but fortunately dry! Appreciate your comments!

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Tough to answer without some further details.
How many years leaking?
How much leakage? Was it variable?
What did you do the handle the leakage? Pads? Clamp?
Since activation, have you tried to just drain the bladder frequently to relieve any stress on Bladder and Urethra?
Has your diet changed recently? Like more coffee and other items that could cause irritation?
Franky, I'd seek a second opinion and provide all those answers and more.
Does sound like a troubling situation.
Good luck and swift resolution for you.

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Profile picture for grandpun @grandpun

Tough to answer without some further details.
How many years leaking?
How much leakage? Was it variable?
What did you do the handle the leakage? Pads? Clamp?
Since activation, have you tried to just drain the bladder frequently to relieve any stress on Bladder and Urethra?
Has your diet changed recently? Like more coffee and other items that could cause irritation?
Franky, I'd seek a second opinion and provide all those answers and more.
Does sound like a troubling situation.
Good luck and swift resolution for you.

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@grandpun thanks for your input…I appreciate your questions & support:
Yrs leaking: had the Radical Prostatectomy in 2015 had fairly light leakage ever since used light pads. Over the yrs leakage increased. 7 years after RP cancer came back located in Prostate Bed. Had radiation to knock it out in 2024…did the trick undetectable thus far. After radiation leakage persisted and got much worse (diapers, basically uncontrolled!) That brings us to the current dilemma.
Long story short, we’ve been grasping at straws…UTI (Nope) Kidney Stones (Nope) Taking drugs for bladder spasms (in Process) At my wits end I did a google search of Boston Scientific AUS 800 and complications; I recalled (this week) that upon activation of the device I was instructed to press the pump once to open the cuff. My search revealed the fine print in the device instructions indicate I should have been pressing the pump 2, 3 or 4 times until the pump was flat with a dimple fully opening the cuff. Since changing the routine urinary flow has improved, pain when peeing has subsided and my mental outlook has improved significantly. No Pain when peeing. A bit of mild discomfort in the area but probably due to irritation from reduced flow and strain due to partially open cuff.
I shared this with my Nurse Practitioner contact at my hospital and he indicated ‘gee I always told our patients one pump is sufficient’
Quite the saga…I generally trust and follow the advice of my Dr’s but there’s a saying ‘Trust, but verify. My hospital is always ranked in the top 10 nationally. I guess being proactive has its benefits. Been freaking out as we are going abroad in six weeks time which would not be possible if this problem were not rectified and trout season is just around the corner!

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Hi there. I am two weeks post AUS surgery. I know you are supposed to pull down on the device twice a day. Still a little uncomfortable to do. My concern is it almost feels like a third testical is connected to the pump. Has anyone experienced this.
Thanks
Tim

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Mine is a Boston Scientific, AUS 800 and I've never heard nor read about pulling down on it. Such a move seems counterproductive to me. Maybe just feel it to assure it's in place. And why risk disturbing the surgical installation????
Also, from comments on this forum, our approaches to using this device seems a bit variable. It took me a few tries to find the most effective and most comfortable actions to activate opening the cuff. I use multiple squeezes. That has seemed both effective in emptying my bladder and comfortable to both my plumbing as well as my arthritic fingers/thumb.
You and others may find a different technique is best so go with it. And if you have any questions get a couple different opinions from your urological and surgical teams. Good luck finding comfort and effectiveness.

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I'll add this for all AUS users:
I now wear a 'MedAlert' bracelet that states: 'Artificial Sphincter. Do Not Catheterize'.
If some EMS or ER person tries to insert a catheter it will likely damage my urethra if the AMS cuff is "closed".
I also carry the instructions for de-activation of the AMS with me all the time.
I'd suggest you consider a similar, cautionary warning.
Good luck to all and successful AMS usage.

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Profile picture for tailport @tailport

Hi there. I am two weeks post AUS surgery. I know you are supposed to pull down on the device twice a day. Still a little uncomfortable to do. My concern is it almost feels like a third testical is connected to the pump. Has anyone experienced this.
Thanks
Tim

Jump to this post

@tailport I've had my AUS for six years. Yes, pull down on the device while the plumbing is still getting set. Early urination was uncomfortable and activating the device initially was painful in my scrotum. However, once everything gets settled and your scrotum builds up tolerance to the pump activation, the AUS is truly a life changer. My experience with Mayo Clinic through this journey has been very helpful, so if you can, connect with them with your questions.

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Profile picture for jbuuck @jonbuuck

@tailport I've had my AUS for six years. Yes, pull down on the device while the plumbing is still getting set. Early urination was uncomfortable and activating the device initially was painful in my scrotum. However, once everything gets settled and your scrotum builds up tolerance to the pump activation, the AUS is truly a life changer. My experience with Mayo Clinic through this journey has been very helpful, so if you can, connect with them with your questions.

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@jonbuuck
Thank you so much.
We will see how it goes.

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