AUS surgery recovery process

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Greetings, I am 74, had RRP in 9/22 and while incontinence improved in following months, I continued to have severe stress incontinence (10+ pads/diapers per day). Last fall I inquired about experience with AUS surgery and received several helpful responses.

I had AUS surgery a week ago and am still in recovery. The discomfort due to incisions is minimal, but one side effect I did not expect persists - after the foley catheter was removed the following morning, I could not pee and did not leak. I was told that inflammation from the surgery likely pressured the sphincter/urethra. I was shown how to self-catheterize and discharged with 6 or so extra catheters. (I was told about 15% of AUS patients experience this side effect.)

The second day I began to have urges which would increase in intensity and began to pee with dribbles and slow stream in the toilet - very uncomfortable. I have had to get up 3 or 4 times each night to pee (I tried to self-catheterize before bed, but nothing comes out.) At this point, I am peeing in the toilet, but must stress to pee, very weak steam, and am not sure the bladder empties. The surgeon says to be patient and within the next few weeks I should again have stress incontinence (which should be controlled when the device is activated 5 weeks from now.) I find it ironic that AUS has stopped my leaking at least temporarily, but created the opposite problem.

I am curious whether anyone has had a similar experience post AUS surgery and how recovery from this situation progressed.

As an aside, I used the catheters supplied by the hospital in the first two days. It was difficult to obtain additional catheters. I did not know self-catheters are a prescription device, not sold at a pharmacy, but obtained from a medical supply company that arranges for drop ship delivery. My surgery was done at a medical center 3 hours away -- they contacted a local hospital which provided additional catheters.
 
You can order catheters from any medical supply company who takes care of the paperwork. Medicare covers the cost of catheters. I highly recommend getting deposable catheters that are lubricated.
 
Sorry to hear you had issues with your AUS surgery and hope you will be ok soon. I had AUS surgery last April. I was told that when the catcher was removed I might get a false sense that my leaking might stop after the operation due to swelling. Well it did for about 8 hours, then the leaking came back to the way it was. After 6 weeks the device was activated at the doctor’s office. I wore a new pad home just in case. Well I can tell you I didn’t need it. It was hard for me to accept it. I wore depends pull-up with heavy duty pads in them for more than 2 years, with lots of embarrassment along the way. And 5 minutes after it was activated I no longer need pads or pull-ups. As I said before in other posts the light switch was turned on in the dark room.
I’m sure in 5 weeks you’ll be a happy man. Enjoy your new birthday when it comes. Please keep us posted.
 
I did have difficulty peeing after the AUS device was implanted. I did not however have to use a catheter, it was just a matter of having to push and a very weak stream. It took about 10 days or so to begin to be back to normal. I was fortunate enough to be able to have the device activated at 3 weeks post surgery and have been completely dry ever since. I’m now a little over 3 months post surgery and still have some soreness in my scrotum but couldn’t be happier with the results. Hoping things improve quickly for you!
 
Atcmono - best wishes for your procedure and thanks for your comment.

Maureen2623 - thanks for your comment about catheter supply sources - the medical supply companies I contacted did not have inventory on hand, but dropped shipped the product - at least a day delay. this usually would not be a problem, except I needed some that day.

Cay and Lemmo, I very much appreciate your responses and it is comforting to know others have gone through similar experiences with good outcomes.

There has been significant improvement since my post two days ago. I still have urges that increase in intensity and have to stress to pee, but it is much less painful. Also, I have begun to leak between the urges -- it is ironic to view the return of stress incontinence as a good sign -- so I believe the inflammation is diminishing.

I have 5 weeks to go until my next appointment.

Thanks again for your responses, care and concern.
 
On the morning after my AUS surgery, the urologist pulled out my catheter, and I was dry. So the nurses had me guzzle liquid, as they didn’t want to discharge me until I could pee. Well, two hours later, I could not get a drop out, and was feeling the pressure. My urologist said to come by his office about 10 minutes from the hospital, as he had some critical patients to see already waiting. The discharge paperwork took longer than desired, so I finally got to his office sometime after three hours, and I was almost screaming. He took me immediately and reinserted a catheter. WHAT A RELIEF! He had me wear the catheter for another day, and upon removal, I could pee with some effort, but began dripping regularly as before. After activation, I have been 95% dry, and think most of my leakage has been technique of ensuring the last drops are out before leaving the urinal. Best of luck.
 
I am 70 and had RRP 9/22. Prior to surgery I had urinary frequency and urge issues and for many years had pelvic pains. After RRP my pelvic pains became a lot worse and I could not sit. The pain became intolerable and I had a had a pudendal nerve block and the sitting pain is gone but I have penal pain and other pelvic pain. My pudendal nerve is hypersensitive to pressure and muscle tension. I have been using diapers since the RRP and the frequency severely impacts my sleep. I wanted to get the AUS and was going to talk to my Dr about it but I am afraid it might set off the pudendal nerve. My PSA blood sample yesterday came off of the less than <.02 of my lab and went to .03. While this is a small change it is in the positive direction and I had several locations without positive margins. Ussaully they call it a recurrence when it reaches .2. Everything keeps piling up as I got the flu then pneumonia and then have a continuous low grade fever for several weeks which is still there. I would like to get rid of the incontinence but I do not want the pelvic pain to increase. I can tolerate the pain level I am at now
The sleep is my number 1 priority. The best sleep I have gotten was after the RRP and I had the catheter for the week and Slept through the night. I felt so great, the best in over 10 years.
I really do not know where to head and that is why I am trying to accomplish one thing at a time
 
My AUS surgery was almost 6.5 weeks ago and it was activated Wednesday. I am 70 years old and have been incontinent for over 2 years after my RP surgery.

My experience these first few days has been a combination of really happy, excited, and relieved. When it was activated at the Doctor's office I stopped in the restroom and put in a fresh pad. It was still dry the next morning. I changed it and did a workout and was still dry. It did get a little wet later that day, but I thought it might be due to not waiting long enough after voiding to "put it away". I started counting 60 heartbeats after finishing with pressing the bulb and have been dry since.

I slept with a light pad last night for the first time since my RP was done 27 months ago instead of the heavy pad. I wore it for my workout, weights and elliptical, this morning, and it was a little wet, but all sweat, no urine.

My Doctor advised me when she activated it to press the bulb three times to start to pee. With practice I have got that down to where first press starts a small stream, second press it really starts flowing, third press and I finish voiding quickly. I then start the 6o heartbeat count to keep everything dry. It is working!

I am sorry a couple of you had issues. Hopefully with time you will have a good experience. For me, this surgery has been like a huge burden has been lifted off my shoulders. I think for people like me who could not beat incontinence with never ending work to improve my pelvic floor muscles, this is a solution that has the potential to really change your life. I already feel like "me" again and ready to get back to living the way I did before Prostate Cancer interfered in my life.
 
That is awesome to hear and especially since my AUS surgery is scheduled in four days! I will counting the days during the 6 weeks post-op for activation of the device but your story gives me great confidence that this will be a success. Thanks for sharing your experience!

Best wishes,

Bill
 
Thank you Leemo. That exactly what I did. I actually have 2 types, one I wear as a necklace and the other as a bracelet. Bye the way I received a pamphlet with written instructions and photos from my urologist on how to deactivate the device.
 
Leemo....Great advice, thank you for the information.

Cay.....thank you for your encouragement and prayers!

Bill
 
Ricard and GaDawg thanks for your encouragement and best wishes for your continued success.

Anxiety, thanks for sharing your experience. Best thoughts and wishes for you as you confront these unfortunate issues.

Lemmo, thanks for your advice....I ordered mine yesterday.

Atcnomo, best wishes for your surgery..I hope your recovery goes well. Please keep us posted.

As an update on my experience, it will be three weeks in two days since the procedure. I am walking about 4 miles a day. I still have frequent urges during the day (did not have these before the surgery), and must stress to pee and have a burning sensation (urinalysis three days ago was negative). I am very much looking forward to my return visit to activate the device in three weeks.
 
Hang in there, DJG. I would suggest talking to your Doctor about what you are experiencing if you have not already.

I am not a Doctor, but what you are experiencing may be partially due to swelling. I sat on ice packs pretty often the first 3 or 4 weeks for about 20 minutes at a time to help with swelling. It definitely helped with managing the irritation from the incision behind the scrotum. Maybe that would help.
 
Thanks GaDawg,

I've spoken to my doctor who believes it is due to swelling/inflammation from the surgery. I will continue with ice packs...glad to hear that your situation improved.

Thanks again,


DJG
 
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