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

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@dmccarthy104

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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Thank you Very reassuring. 🙂

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After my prostatectomy, I had a problem with extreme urinary frequency. I tried different medications without success. I was then referred to Dr. Marshall Stoller at UCSF, which fortunately is my treating hospital. He pioneered a treatment now known as SANS (Stoller afferent neurostimulation). An acupuncture needle is placed in your ankle and is connected to a battery. This stimulates a nerve which runs from the ankle to the bladder. The treatment lasts 30 minutes. Initially, it's weekly, then monthly and eventually 2-4 times/year. For me, it did wonders, is non invasive and painless (other than the acupuncture needle). I no longer have the problem. If you google "stoller sans" you'll find a wikipedia explanation and many studies of this procedure, which is now being used at lots of major institutions for incontinence and frequency. It doesn't work for everyone but it can be very effective and there's not a big down side to trying it.

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@tomf

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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At 56 y/o after a 2007 non-nerve sparing prostatectomy I’ve experienced 5-trips to urinate during the nite. My history of poor sleep prior to PC did not help. Reading your experience inspires me to continue to work towards improved continence. I continue to see a Licensed Acupuncture Physician to further improve my sleep and it does help, The nite after Acupuncture I often sleep 4 hours straight. My THEORY is to let the body find new pathways for the nerves to regenerate…and keep looking for solutions.

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@scullrower

I’ve had an artificial urinary sphincter for several years now. It has been very helpful although my urge incontinence can be so severe at times that urine pushes through the sphincter. If I urinate on a schedule those urges are fewer. Except for the discomfort for the few weeks after it’s insertion, I have experienced no pain and using the apparatus is second nature now. My only suggestion would be to check out Botox before going the sphincter route. Best wishes.

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Scullrower. Finally, someone else with an AUS. I hope I can ask you a couple of questions. My first attempt failed back in August 2021. Revision surgery, and ended with emergency surgery valentines day 2022. Catheter for a long time. Had urethroplasty to repair damage caused by the first one. Got a suprapubic catheter to let it heal. Got my AUS installed October 25, 2023. December 18 2023 had catheter removed and hardware activated. My surgeon said to pump the bulb 3 times to open up the cuff. I start peeing a lot when barely pumping the bulb one time. How many times do you have to pump your bulb to go to the bathroom? Do you start leaking after 1 pump? How long did it take for your to be comfortable with all this? Do you find it helpful to go to the bathroom kinda on a schedule instead of waiting until you need to go? Are you able to stand up? My doc said to try sitting down but I can get hold of anything and can't pump it. My urge comes on suddenly with not much notice. Thank you for any help I can get. Have a fun day.

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@budisnothome

Scullrower. Finally, someone else with an AUS. I hope I can ask you a couple of questions. My first attempt failed back in August 2021. Revision surgery, and ended with emergency surgery valentines day 2022. Catheter for a long time. Had urethroplasty to repair damage caused by the first one. Got a suprapubic catheter to let it heal. Got my AUS installed October 25, 2023. December 18 2023 had catheter removed and hardware activated. My surgeon said to pump the bulb 3 times to open up the cuff. I start peeing a lot when barely pumping the bulb one time. How many times do you have to pump your bulb to go to the bathroom? Do you start leaking after 1 pump? How long did it take for your to be comfortable with all this? Do you find it helpful to go to the bathroom kinda on a schedule instead of waiting until you need to go? Are you able to stand up? My doc said to try sitting down but I can get hold of anything and can't pump it. My urge comes on suddenly with not much notice. Thank you for any help I can get. Have a fun day.

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Hello,

Just a slight touch and my AUS opens up. Although I can activate the unit standing (but I have to unbuckle my pants and lower them slightly to do so) I prefer to sit. After a while, finding the scrotum bulb becomes second nature. I squeeze one-handed slightly, pee, squeeze slightly again, pee until the stream quits. I do have urge incontinence from time to time, not a pleasant feeling so I pee frequently (once every couple of hours) to keep urine volume low. Ive had overactive bladder as far back as I can remember which complicates things but my main objective has always been to reduce constant leakage. I’m not a very self-conscience person so I got used to things quickly and went from three or more pads a day to one. I always wear pads, large ones daytime; light ones at night, just in case. Most of the time the pads remain fairly dry, but they give me reassurance and catch the occasional urges. Without the AUS I wouldn’t be able to get the massages I rely on for stress reduction and relaxation. A treat, perhaps, but my body has been through enough not to be treated well from time to time. I hope my comments help. Best wishes.

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@scullrower

Hello,

Just a slight touch and my AUS opens up. Although I can activate the unit standing (but I have to unbuckle my pants and lower them slightly to do so) I prefer to sit. After a while, finding the scrotum bulb becomes second nature. I squeeze one-handed slightly, pee, squeeze slightly again, pee until the stream quits. I do have urge incontinence from time to time, not a pleasant feeling so I pee frequently (once every couple of hours) to keep urine volume low. Ive had overactive bladder as far back as I can remember which complicates things but my main objective has always been to reduce constant leakage. I’m not a very self-conscience person so I got used to things quickly and went from three or more pads a day to one. I always wear pads, large ones daytime; light ones at night, just in case. Most of the time the pads remain fairly dry, but they give me reassurance and catch the occasional urges. Without the AUS I wouldn’t be able to get the massages I rely on for stress reduction and relaxation. A treat, perhaps, but my body has been through enough not to be treated well from time to time. I hope my comments help. Best wishes.

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Thank you. I will keep trying to sit.

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Hi budisnothome and skullrower,
Maybe I’m lucky but my AMS 800 works fine. No leakage so after an urge I’m still good for about 1/2 hour.
These things must be “calibrated” for pressure differently. I need a firm squeeze then it starts like gangbuster flow. Another squeeze or two to be sure and I’m done.
It’s been about 5 months since activated and now all I need is a couple days at home (just in case), some confidence, and I’ll see if I can quit even the very light pads.
The surgeon who installed yours may be able to tell you if its pressure can be adjusted easily if you desire.
No matter what it’s so much better than the pads, hassle, and living in a urine swamp 24/7.
Enjoy the freedom and hope you can get it perfected to your liking.

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Hello to all you AUS guys😊. It will be 2 years for me in April. Before the device I used to say, I had no continents, because I literally peed constantly no impulse from my brain because my bladder never filled. Needless to say I look at my artificial sphincter as the greatest thing for my quality of life I am 72 with late stage cancer. As said, by previous responders, there’s a learning curve for use. I live in Florida, so where elastic shorts most of the year and can easily pull down to activate at a urinal. One of my biggest problems has been because of my five years on ADT and Zitega my penis is in hiding most of the time, and if I don’t find it first, and pull it out, no telling where I will be peeing 🤪 using emojis because I feel I have to keep my humor dealing with all of this. I like my guy friends to know what I am going through so that they believe me when I say keep checking for prostate cancer I find most guys don’t like talking about it with me, but I am very fortunate that I have two very close friends that have help me tremendously with my cancer journey being that they have stayed informed about what I am going through. Never looking for sympathy, but just a good ear Golf with these guys and still can’t get any strokes. 🥲🥴.
One more thing a few times I have had a complete emptying without activating the device both times I was sitting and then stood up. Talk to Dr and said they have been cases like this. Not sure but think that maybe the way I was sitting, I activated when I stood up.
Happy New Year to everyone 🎆🎇

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@sam60

Hello to all you AUS guys😊. It will be 2 years for me in April. Before the device I used to say, I had no continents, because I literally peed constantly no impulse from my brain because my bladder never filled. Needless to say I look at my artificial sphincter as the greatest thing for my quality of life I am 72 with late stage cancer. As said, by previous responders, there’s a learning curve for use. I live in Florida, so where elastic shorts most of the year and can easily pull down to activate at a urinal. One of my biggest problems has been because of my five years on ADT and Zitega my penis is in hiding most of the time, and if I don’t find it first, and pull it out, no telling where I will be peeing 🤪 using emojis because I feel I have to keep my humor dealing with all of this. I like my guy friends to know what I am going through so that they believe me when I say keep checking for prostate cancer I find most guys don’t like talking about it with me, but I am very fortunate that I have two very close friends that have help me tremendously with my cancer journey being that they have stayed informed about what I am going through. Never looking for sympathy, but just a good ear Golf with these guys and still can’t get any strokes. 🥲🥴.
One more thing a few times I have had a complete emptying without activating the device both times I was sitting and then stood up. Talk to Dr and said they have been cases like this. Not sure but think that maybe the way I was sitting, I activated when I stood up.
Happy New Year to everyone 🎆🎇

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Good morning sam60. I agree... what penis. I better find it and get it out and hope to hit the toilet. Had many messes at first. And yes to pull pants all the way down or soak underwear. Happy New Year.

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@sam60

Hello to all you AUS guys😊. It will be 2 years for me in April. Before the device I used to say, I had no continents, because I literally peed constantly no impulse from my brain because my bladder never filled. Needless to say I look at my artificial sphincter as the greatest thing for my quality of life I am 72 with late stage cancer. As said, by previous responders, there’s a learning curve for use. I live in Florida, so where elastic shorts most of the year and can easily pull down to activate at a urinal. One of my biggest problems has been because of my five years on ADT and Zitega my penis is in hiding most of the time, and if I don’t find it first, and pull it out, no telling where I will be peeing 🤪 using emojis because I feel I have to keep my humor dealing with all of this. I like my guy friends to know what I am going through so that they believe me when I say keep checking for prostate cancer I find most guys don’t like talking about it with me, but I am very fortunate that I have two very close friends that have help me tremendously with my cancer journey being that they have stayed informed about what I am going through. Never looking for sympathy, but just a good ear Golf with these guys and still can’t get any strokes. 🥲🥴.
One more thing a few times I have had a complete emptying without activating the device both times I was sitting and then stood up. Talk to Dr and said they have been cases like this. Not sure but think that maybe the way I was sitting, I activated when I stood up.
Happy New Year to everyone 🎆🎇

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Sam60 I agree that my late age golf and pickleball friends are very reluctant to talk about my prostatectomy and resultant incontinence. I try to keep the mood light by telling new guys at pickleball they either have to wear a leg brace or Depends to join the group but no one wants to hear what this life is truly like. Even my Pelvic Floor PT was surprised when during an exercise this week I told her I was leaking. I am eleven months out from my surgery and will not contemplate a surgical resolution to incontinence quite yet. But thanks for telling us some real stories about your journey.

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