Hi All. New to forum. Still incontinent two years after cancer treatment.

[ReR]

Still incontinent two years after prostatectomy followed by radiation. I’m quickly reaching the point where I must make a decision regarding surgery. I’ve tried every type of penile clamp, none of which have been satisfactory.

I’m interested in hearing the experiences of men who’ve undergone sling or AUS surgery. My urologist tells me the chances are 50/50 that the sling will be effective, and strongly recommends AUS. However, I already feel like I’ve been mangled enough by the prostatectomy itself, so the thought of AUS seems horribly invasive.

Because I’ve just joined this forum, I’m eager to read about the experiences of men who’ve had these surgeries. If anyone feels inclined to share their experience I would appreciate it.

 

[Gitzet]

My story is exactly like yours. Prostatectomy followed by radiation. Struggled with incontinence, especially after the radiation so close to the surgery. Tried extensive physical therapy that improved somewhat, but in the end I was still going through as many as 6 pads a day. Had the surgery this past March. I’m thrilled with the result. I still leak/squirt occasionally, so I do wear a pad mostly just in case. Wearing one for protection is 99% better than the six I was going though. I say go for it. Some guys get to 100% dry. Good luck.

 

[TimmyOrlow0111]

My story is exactly like yours. Prostatectomy followed by radiation. Struggled with incontinence, especially after the radiation so close to the surgery. Tried extensive physical therapy that improved somewhat, but in the end I was still going through as many as 6 pads a day. Had the surgery this past March. I’m thrilled with the result. I still leak/squirt occasionally, so I do wear a pad mostly just in case. Wearing one for protection is 99% better than the six I was going though. I say go for it. Some guys get to 100% dry. Good luck.

I am in the same exact boat. Prostatectomy in July 2022, almost completely dry in the summer of 2024. Had to have 39 radiation treatments in the Fall of 2024 and incontinence returned within months of the end of radiation. Have consulted with Dr's and they are recommending AUS, I am 65 and they believe that the sling would work short term but that I'd eventually end up with the AUS implant. I understand that you are thrilled with the results, which is great to hear, I am hoping the same but how is managing the pump? Have you had any challenges? I understand that it is a 2 hand operation.

Just incredibly curious because as to your experience as I am close to pulling the trigger as I miss my more active lifestyle. Anything that you might be willing to share would be great.

Thanks in advance,
Tim

 

[Gitzet]

Yes! For me, it’s a two hand operation. Pump is on the left side. You have to pull out the boys, pinch/secure the tubes just above the pump with you left hand, then operate/squeeze the pump with your right hand. A wee bit awkward at first, then it’s no big deal. I find it easier to just drop my pants to the floor, then do my thing. The only time it’s a challenge is in a public restroom room or peeing outside behind a tree or over the side in a boat, it’s somewhat interesting to keep your pants partially up while doing the deed. Honestly, not a big deal. I find myself having a good chuckle about it. Just do it. Wish you the very best. Hope this helps.
BTW, I’m 74 years old

 

[cay]

Still incontinent two years after prostatectomy followed by radiation. I’m quickly reaching the point where I must make a decision regarding surgery. I’ve tried every type of penile clamp, none of which have been satisfactory.

I’m interested in hearing the experiences of men who’ve undergone sling or AUS surgery. My urologist tells me the chances are 50/50 that the sling will be effective, and strongly recommends AUS. However, I already feel like I’ve been mangled enough by the prostatectomy itself, so the thought of AUS seems horribly invasive.

Because I’ve just joined this forum, I’m eager to read about the experiences of men who’ve had these surgeries. If anyone feels inclined to share their experience I would appreciate it.

AUS is the way to go. The surgery was not a big deal either. I went from 5 to 7 pads per day with 2 Depend underwear for 3 years. After the AUS surgery I only use 1 shied in my boxers just for any minor drips. It's life changing and the best decision I made. You will not regret it if you choose the AUS.

 

[DJG]

I had RPS in September 2022 at age 73 and never regained continence. I pursued PT, had acupuncture treatments and did countless kegels with no positive effect. I went through about 5-10 depends a day. I was usually dry during the night.

I decided to have AUS surgery in the fall of 2023 and had it at Mayo Clinic in Minnesota in February 2024.

It is not perfect, but so very much better that I have no seconds thoughts. Reciovery for me was not easy.

I strongly recommend thoroughly researching the surgeon. It is important that the surgeon have mastered this procedure - the surgeon at Mayo has coauthored many studies on AUS effectiveness and is approaching 2,000 procedures as I recall.

There have been many posts on this topic and suggest you research archives.

Good luck.

 

[jayhoward0521]

I had RPS in May 2024 and am now 69. While I'm still incontinent, I only use one pad per day and stay dry at night. Pelvic floor therapy has helped somewhat, but my doctor suggests a sling, noting that I may still have minor leaks with certain movements even after surgery. Given the risks and my current manageable condition, I’m leaning against surgery and considering just continuing with one pad a day. Is this a reasonable approach, or should I reconsider?

 

[TimmyOrlow0111]

Yes! For me, it’s a two hand operation. Pump is on the left side. You have to pull out the boys, pinch/secure the tubes just above the pump with you left hand, then operate/squeeze the pump with your right hand. A wee bit awkward at first, then it’s no big deal. I find it easier to just drop my pants to the floor, then do my thing. The only time it’s a challenge is in a public restroom room or peeing outside behind a tree or over the side in a boat, it’s somewhat interesting to keep your pants partially up while doing the deed. Honestly, not a big deal. I find myself having a good chuckle about it. Just do it. Wish you the very best. Hope this helps.
BTW, I’m 74 years old

Thanks for the response, you seem like you could make the best of any situation much like myself. The 2 hand operation dulls in comparison to dealing with this, I'd rather get my active life back. Be well!

 

[thudson1965]

I had RPS in May 2024 and am now 69. While I'm still incontinent, I only use one pad per day and stay dry at night. Pelvic floor therapy has helped somewhat, but my doctor suggests a sling, noting that I may still have minor leaks with certain movements even after surgery. Given the risks and my current manageable condition, I’m leaning against surgery and considering just continuing with one pad a day. Is this a reasonable approach, or should I reconsider?

I would say that I would not have had the sling surgery if I was down to 1 pad a day and dry nights.

I went from overactive bladder to underactive bladder with the sling. I had the foley catheter in for 2 weeks and had to self catheterize for 4 weeks after the sling.

I had prostatectomy in Sept 2020 and the sling surgery in Sept 2021. Before the sling surgery I was leaking 20 ounces a day and using 4 pads and 1 pullup at night.

Now almost 4 years later - I leak a small amount when rising from certain sitting positions. Also when I work outside or exert, I may leak at night before waking up to pee.