Do you have urinary incontinence after prostatectomy & radiation?

Posted by hmctgraybill51 @hmctgraybill51, Apr 16, 2022

Hello, I underwent a prostatectomy in Sep 2017. Gleason score of 9 with a positive margin. 8 months later began radiation tx with rising PSA. As of this date my PSA's have been undetectable however, I continue to have moderate to severe incontinence. I have seen two urologists with one suggestion the male sling and the other the artificial urinary sphincter for relief. I'm looking for any men with experience in either of these procedures and your comments. Thank You

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

Ken, 1946 was a good year for me as well.
Though my path was much "easier" for me than you, at our age I can assure you that if you can even think of sex - go for it!
I had a beer last night that my cardiologist said I shouldn't think about; and I may have an ice cream tonight.
Enjoy whatever you can in the days granted you by the Good Lord and doctors professional skill.

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I’m 68 year old active man in relatively good health, no major issues prior to the PC diagnosis, however a little overweight.
I had nerve saving RP on Oct 31. The surgery involved right neurovascular bundle resection. The left bundle was saved. Since surgery, my wounds have healed up and I have had minimal discomfort or pain. However I have experienced severe incontinence since the catheter was removed. It is almost 8 weeks now and I’ve seen little to no improvement in my bladder control. I have been doing Kegel exercises on a regular daily basis but haven’t noticed any effect as yet. I have minimal feeling in my penis or bladder when leaking or streaming urine. So I don’t get much warning. I only know from the warmth in my Depends. I go through 3-5 Depends a day. While I’m sleeping I get some leaking but not a lot. I do wake up one or twice during the night and am able to get to the restroom to urinate.

I’m frustrated to no end, as it is and will be difficult for me to get back to my activities - working out, golf, walking and ultimately cycling.

I know it is early days and I need to have lots of patience (not my superpower)!! I have my 3 month check in with my Mayo surgeon early February.

I’m looking for any insights from men who have experienced a similar situation, with resection of a neurovascular bundle. How did your incontinence improve over time? What did you do to gain this improvement? Any other helpful thoughts? Many thanks!!

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@bberger1955

I’m 68 year old active man in relatively good health, no major issues prior to the PC diagnosis, however a little overweight.
I had nerve saving RP on Oct 31. The surgery involved right neurovascular bundle resection. The left bundle was saved. Since surgery, my wounds have healed up and I have had minimal discomfort or pain. However I have experienced severe incontinence since the catheter was removed. It is almost 8 weeks now and I’ve seen little to no improvement in my bladder control. I have been doing Kegel exercises on a regular daily basis but haven’t noticed any effect as yet. I have minimal feeling in my penis or bladder when leaking or streaming urine. So I don’t get much warning. I only know from the warmth in my Depends. I go through 3-5 Depends a day. While I’m sleeping I get some leaking but not a lot. I do wake up one or twice during the night and am able to get to the restroom to urinate.

I’m frustrated to no end, as it is and will be difficult for me to get back to my activities - working out, golf, walking and ultimately cycling.

I know it is early days and I need to have lots of patience (not my superpower)!! I have my 3 month check in with my Mayo surgeon early February.

I’m looking for any insights from men who have experienced a similar situation, with resection of a neurovascular bundle. How did your incontinence improve over time? What did you do to gain this improvement? Any other helpful thoughts? Many thanks!!

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Hi @bberger1955, I moved your questions about incontinences after radical protatectomy with resection of a neurovascular bundle to this discussion:
- Do you have urinary incontinence after prostatectomy & radiation?
https://connect.mayoclinic.org/discussion/urinary-incontinence-1/

I did this so you can read tips and resouces, as well as experiences posted by members and connect with them easily.

You are certainly not alone. There are a number of incontinence-related discussions that you may also be interested in using the group search: Here's a listing:
https://connect.mayoclinic.org/group/prostate-cancer/?search=incontinence&index=discussions

It may seem overly simple, but Kegel exercises help,
- Do those Kegels!
https://connect.mayoclinic.org/discussion/do-those-kegels/

Other Kegel discussions: https://connect.mayoclinic.org/group/prostate-cancer/?search=kegels&index=discussions

Good luck with developing the super power of patience. Don't forget to recognize the incremental improvements. 🙂

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Hello Berg55,
Colleen gave you some good sources, I’m sure. Check them out.
FWIW I can share my incontinence story for your info.
I had very similar RP January 2022. Similar good recovery. Did Kegels before and after RP. But I guess I lost too much of the sphincter likely due to a large prostate, 70cc.
Then, total incontinence. Of course this is the WORST possible urinary outcome. I was really bummed about the whole mess - - literal mess!
For about 15 months I struggled with Kegels. Never saw any improvement.
But like all of us in some ways or others, we cope with the situation and try to find the best response we can.
So at 75 years old I became an infant again. Yeah, it was a spirit crusher but nobody knew unless I told them. So how to cope???
I used Prevail brand briefs though I only could find them on Amazon; no big deal as their price was typical to others; they were just handy and not as bulky. Also, I’d get “Depends Guards for Men, 52 count”. (Luckily I found a much cheaper, and I felt better, store brand at out local chain, Meijers).
At the 15 month mark I got an AMS 800 artificial sphincter. And by a great surgeon too. Though I had to wait about 5 weeks for all the healing to be completed beyond any doubt. Then I had it activated. Right off I went from 7 to 8 pads + one brief per day to one pad and only the brief to hold it in place. In a week or so, I was comfortable that the new rig was working, I got smaller pads and regular jockey shorts. Less bulk!!! More comfort!!! And able to stand up to a commode (though I had to put my pants down since the AMS is a two handed operation) like a man!!!!!!!
What a spirit booster that was. Now I only wear a thin pad as another “just in case” though I’ll be tryin out NO supplemental pad right after the Holiday travel is over. And, yeah, I’m taking it slowly. I just don’’t want to relive that incontinence in any way.
Add that to my lifted spirit and now life is GOOD. No more changing pads every 2 hours! And I can go as much as 5-ish hours if I need to; longer means I’m not drinking enough.
So should the worst happen to you I am confident that you will cope and survive; and hopefully survive well.
So Kegal away and plan for the best but know what to do if it’s the worst.
Be strong, be positive, be creative and with the Good Lord’s help you’ll come out the other side with a great life to live.
All the best!!

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I had a radical prostatectomy in 2006 and then 39 radiation treatments in 2013. I have urinary incontinence and frequent urges quite often, I did have the “ Male Sling “ installed and it did cut down on my incontinence quite a bit, But I still get frequent urges.

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I recommend getting your Doctor to refer you to a clinic for outpatient PT where someone with a Doctorate in PT (DPT) can guide you through a program of various Kegel and Core exercises.

It’s sad that urologists and surgeons don’t ALL make this referral to all PC patients.

Mine did and I did 4-6 weeks of PT before my surgery and this enabled me to be 100% continent immediately after my catheter was removed. I followed up with several more weeks after the catheter was out.

I bought a set of Whataband stretch bands, as used at the clinic, from Amazon for about $35 and used those on days I did not go to the clinic.

I heartily recommend a Baylor Scott & White clinic if there is one near you

Good luck to you.

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@bberger1955

I’m 68 year old active man in relatively good health, no major issues prior to the PC diagnosis, however a little overweight.
I had nerve saving RP on Oct 31. The surgery involved right neurovascular bundle resection. The left bundle was saved. Since surgery, my wounds have healed up and I have had minimal discomfort or pain. However I have experienced severe incontinence since the catheter was removed. It is almost 8 weeks now and I’ve seen little to no improvement in my bladder control. I have been doing Kegel exercises on a regular daily basis but haven’t noticed any effect as yet. I have minimal feeling in my penis or bladder when leaking or streaming urine. So I don’t get much warning. I only know from the warmth in my Depends. I go through 3-5 Depends a day. While I’m sleeping I get some leaking but not a lot. I do wake up one or twice during the night and am able to get to the restroom to urinate.

I’m frustrated to no end, as it is and will be difficult for me to get back to my activities - working out, golf, walking and ultimately cycling.

I know it is early days and I need to have lots of patience (not my superpower)!! I have my 3 month check in with my Mayo surgeon early February.

I’m looking for any insights from men who have experienced a similar situation, with resection of a neurovascular bundle. How did your incontinence improve over time? What did you do to gain this improvement? Any other helpful thoughts? Many thanks!!

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5 months since for me bud. It gets better. I do 1,000 cruches a day for Core
building too plus the Kegels. One other one you can do is lay on the back and
hunch as high as you can go and hold it for a minute and do 3 of them. When you do Kegels, grab and then flex the butt also. I still pee a lot and do have accidents. I don't wear any diaper crap. It makes me focus hard and it really works most of the time.

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I know I wrote this somewhere but I will risk being repetitive, PT and Kegels are wonderful and helpful, but not a guarantee of continence. I went to a pelvic floor specialist two months before my RALP and got high ratings for the strength of those muscles. I did my Kegels faithfully until the surgery and when I was given the okay after the surgery I did them again. Six months later, my urologist was not satisfied with my progress so referred me to PT at his facility but an hour away from my house. After 6 weeks there two things happened; I was able to get into a clinic in my own town with a DPT specialist in pelvic floor issues, and two, my original therapists said there was nothing more they could do for me, that my pelvic floor was in as good a shape as they could get it. Now, four weeks later, my new therapist is saying the same thing to me. My pelvic floor is in excellent shape. So why do I still have stress incontinence? Perhaps, the surgery wasn't as perfect as my urologist claims it was? Another option is my anatomy prior to surgery. Years ago in another state far from my current one, that urologist ran a urodynamic test on me and discovered that my bladder was distended, stretched out so much the muscles couldn't empty it well. My career didn't allow for bathroom breaks very often so I had to hold it in, and the result was the distended bladder. I am wondering if that history ever made it to the desktop of my urologist here in my new home. Yes I should have brought it up, but when you are told you have prostate cancer and you have to decide what to do, bladder distension from 15 years earlier isn't the first thing that pops into your head. My PT hypothesizes that my bladder neck may have been distended too, making this quest for continence more challenging. So what I am saying is, there are other factors that enter into our recuperation. Not all surgeries are alike, not all bladders are alike, and not all recoveries are alike. Those of us struggling to achieve continence can only keep working at it and hope for that miracle day to happen.

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@bberger1955

I’m 68 year old active man in relatively good health, no major issues prior to the PC diagnosis, however a little overweight.
I had nerve saving RP on Oct 31. The surgery involved right neurovascular bundle resection. The left bundle was saved. Since surgery, my wounds have healed up and I have had minimal discomfort or pain. However I have experienced severe incontinence since the catheter was removed. It is almost 8 weeks now and I’ve seen little to no improvement in my bladder control. I have been doing Kegel exercises on a regular daily basis but haven’t noticed any effect as yet. I have minimal feeling in my penis or bladder when leaking or streaming urine. So I don’t get much warning. I only know from the warmth in my Depends. I go through 3-5 Depends a day. While I’m sleeping I get some leaking but not a lot. I do wake up one or twice during the night and am able to get to the restroom to urinate.

I’m frustrated to no end, as it is and will be difficult for me to get back to my activities - working out, golf, walking and ultimately cycling.

I know it is early days and I need to have lots of patience (not my superpower)!! I have my 3 month check in with my Mayo surgeon early February.

I’m looking for any insights from men who have experienced a similar situation, with resection of a neurovascular bundle. How did your incontinence improve over time? What did you do to gain this improvement? Any other helpful thoughts? Many thanks!!

Jump to this post

Thank you for sharing. I too have no feeling to urinate, just a stream that leaks out.
What has helped me is sticking to a diet. Biggest change is no more coffee, or carbonated drinks. The diet seems to have helped.

Am 8 weeks out and down to one thin pad during the day and one at night.

Kegels, fast and slow up to 8 times per day. And lots of core exercises. Seems to have helped.

And I took had right bundle resection.

Good luck with the Drs visit.

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