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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!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

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lsk1000 | @lsk1000 | May 3 8:36am
In reply to @tuckerp "just when I am almost ready to have the AUS put in, a message will pop..." + (show)
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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.

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@tuckerp I would encourage you to try an incontinence clamp (I use Wiesner on Amazon $39, but best to try a few for fit and comfort). I began using the clamp after using external catheters (which wouldn’t wish on my worst enemy) while deciding on whether to proceed with a surgical option. The clamp works so well I never looked back.

Note: Although the makers and doctors advise not to wear more than 2-3 hours at a time, I’ve been wearing it for 18-20 hours every day for 4 years. I use one Tena pad a day so not to ratchet the clamp overly tight. It’s been a comprehensive fix with which there are no limitations to the cloths that can be worn or the things that can be done. You owe yourself a look at it.

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Mrs K | @klein505 | May 3 8:54am
In reply to @diverspy47 "My prostate was removed in 2018, cancer returned; extensive radiation treatments. Severe leakage , 10+ pads..." + (show)
Profile picture for diverspy47 @diverspy47

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?????

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So sorry you are experiencing this pain 🙁 🙁
Has your current doctor ordered any tests or scans to see what is going on ?
I am sure a consult with another doctor or facility will help.
If you search here on AUS you will find similar discussions, here is another patient that also had pain:
https://connect.mayoclinic.org/discussion/aus-800-post-activation-pain/

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tuckerp | @tuckerp | May 3 11:02am
In reply to @lsk1000 "@tuckerp I would encourage you to try an incontinence clamp (I use Wiesner on Amazon $39,..." + (show)
Profile picture for lsk1000 @lsk1000

@tuckerp I would encourage you to try an incontinence clamp (I use Wiesner on Amazon $39, but best to try a few for fit and comfort). I began using the clamp after using external catheters (which wouldn’t wish on my worst enemy) while deciding on whether to proceed with a surgical option. The clamp works so well I never looked back.

Note: Although the makers and doctors advise not to wear more than 2-3 hours at a time, I’ve been wearing it for 18-20 hours every day for 4 years. I use one Tena pad a day so not to ratchet the clamp overly tight. It’s been a comprehensive fix with which there are no limitations to the cloths that can be worn or the things that can be done. You owe yourself a look at it.

Jump to this post

@lsk1000 Thanks. I have 3 or 4 weisner clamps. I even have a couple of other brands. Same concept. I have experimented with every option with the external catheter. I have it down where its almost fool proof. just part of getting dressed in the morning. I can hold it during the night so I dont use anything. The clamps do cause some soreness longer than about 3 hours but I clamp for no leaks. My latest issue is that I just recently became sexually active. My wife passed a few years ago. I am continent laying down but all the extra movement has me leak if I dont watch it. Thinking at 74 if thats the only reason to get an AUS. I guess the fact that I can even think about it is an accomplishment.

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Jeff Marchi | @jeffmarc | May 3 11:05am
In reply to @tuckerp "@lsk1000 Thanks. I have 3 or 4 weisner clamps. I even have a couple of other..." + (show)
Profile picture for tuckerp @tuckerp

@lsk1000 Thanks. I have 3 or 4 weisner clamps. I even have a couple of other brands. Same concept. I have experimented with every option with the external catheter. I have it down where its almost fool proof. just part of getting dressed in the morning. I can hold it during the night so I dont use anything. The clamps do cause some soreness longer than about 3 hours but I clamp for no leaks. My latest issue is that I just recently became sexually active. My wife passed a few years ago. I am continent laying down but all the extra movement has me leak if I dont watch it. Thinking at 74 if thats the only reason to get an AUS. I guess the fact that I can even think about it is an accomplishment.

Jump to this post

@tuckerp
You have some major pain from your treatment. You can’t rely on one doctor that has no answers. Time to hit a center of excellence and get a full work up to try to figure out what’s going on. You may need to see two doctors to find one that can help, Look for doctors that have expertise in this area.

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tuckerp | @tuckerp | May 3 12:22pm
In reply to @jeffmarc "@tuckerp You have some major pain from your treatment. You can’t rely on one doctor that..." + (show)
Profile picture for Jeff Marchi @jeffmarc

@tuckerp
You have some major pain from your treatment. You can’t rely on one doctor that has no answers. Time to hit a center of excellence and get a full work up to try to figure out what’s going on. You may need to see two doctors to find one that can help, Look for doctors that have expertise in this area.

Jump to this post

@jeffmarc I had my surgery done at Banner Health in Phoenix. I switched 2 years ago to Mayo Clinic Phoenix. Dr Wolters. He ran all the testing. Nothing particularly glaring about the surgery. I do have a very over active bladder that medication may help. He also sent me to 6 months of kegel PT at Mayo. I still do those exercises. However, I still leak. I went back to see him last fall and he recommended an AUS. He was not as fond of ProAct. He felt the AUS would be a game changer. I also had him look at an implant. He started me on trimix and that has worked quite well. After close to year of trimix and tadalafil daily I am almost back to normal. I had seen where you were having an AUS. I just worry about doing something where I make things worse. Life and PC seem to be manageable at the moment.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 6 days ago
In reply to @diverspy47 "My prostate was removed in 2018, cancer returned; extensive radiation treatments. Severe leakage , 10+ pads..." + (show)
Profile picture for diverspy47 @diverspy47

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?????

Jump to this post

@diverspy47, I moved your question to this related discussion so you can easily connect with others.

- Anyone deal with pain post AUS 800 activation?https://connect.mayoclinic.org/discussion/aus-800-post-activation-pain/

Has the pain improved in the past couple of weeks? How soon is your first trip?

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diverspy47 | @diverspy47 | 6 days ago

Pain has improved substantially. Part way through my first travel and only issue is increased leakage.

I assume that is due to walking 3 - 5 miles per day with grandkids.

So thankful for infrequent pain. I believe the pain will eventually be gone. Big improvement over 10 pads per day.

Very attentive Doctor- frequent check in’s.

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