Anyone deal with pain post AUS 800 activation?

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.

@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!

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

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.

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.

@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.

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

My prostate was removed in 2018, cancer returned; extensive radiation treatments. Severe leakage , 10+ pads a day. AUS installation on February 28 with Activation 6 weeks later. AUS works well with minor leakage.

Almost daily I now experience sever pain near my penis tip after usage. Frequently this radiates to the bottom of my body right behind my scrotum and becomes very painful to the touch. Sitting is impossible and I must stand until this passes; up to one hour. Pressing on the right side behind my scrotum finds a “pointy bump” and tubes that are very painful. The pain is severe and breathtaking. I’ve tried pads; no pads, 2 pads, no change.

The pain comes on quickly; massaging the area and oral pain killers help but massaging is not advisable on commercial airline flights, and I have three long trips scheduled this year.

My doctor does not have any other patients with these symptoms; no suggestions.

Anyone have similar issues? Anyone with suggestions? Considering deactivation and returning to pads; pain now is too difficult. What is going on?????

diverspy47,
You seem to be in a terrible spot with this.
I've been blessed with a great surgeon (at least for me) and no real problems.
I'm surprised your surgeon didn't have a lot of insightful questions for you to sort this out. Like: does anything seem to initiate the pain? How often does it occur? Can you describe the "pointy bump" you feel? Any actions that seem to make this occur? Where do you massage to relieve the pain?
If in your situation I think I'd try to find a non-affiliated surgeon familiar with AUS and get a second opinion. Or, just maybe, a neurologist??
If you want, send me a private message and I'll give you my surgeon's contact number. Granted you'd likely have to send whatever scans of the area you have, full history and the like - and then do a tele-med meeting. But it could be a place to start.
Prayers for your success in getting some normality!

just when I am almost ready to have the AUS put in, a message will pop up that makes me nervous again. I have been using condom catheter every day the last 6 years. While this is a terrible inconvenience, I am reluctant to add more trouble. I still consider myself lucky though. No other treatment.