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Extreme Pain After AUS Activatin
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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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.
@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.
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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3 Reactions@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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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.
@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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