Anyone still struggling with urinary incontinence after prostatectomy?

Posted by stoney219 @stoney219, Oct 19 2:24pm

I’m a survivor of stage 2C prostate cancer. I underwent surgery to remove my prostate, and thankfully, there’s still no evidence of cancer.

However, one of the most frustrating challenges I’ve faced since surgery is my inability to fully control my urine.

I’m grateful to be cancer-free, but living with urinary incontinence has been difficult. It’s something that affects your confidence, comfort, and overall quality of life. I’m an active person, and having to constantly think about bladder control is exhausting.

I’m curious to hear from other men who have experienced this following prostate removal.

Did your bladder control eventually improve? How long did it take? Did pelvic floor therapy, exercises, medication, or any other treatments make a meaningful difference? Has anyone undergone an additional procedure to correct the problem?

I’m particularly interested in hearing from men who continued struggling well beyond their initial recovery period.

I know surviving cancer is the greatest victory, and I’m incredibly thankful for that. But I also believe surviving and getting back to living comfortably are two different things.

I’d love to hear what has actually worked for others. Thanks in advance for sharing your experiences.

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

Profile picture for edinmaryland @edinmaryland

I appreciate this thread
I have two questions some may have some experience with
1. when continence is achieved ( I can only hope) do you stop doing Kegels?
2 anyone have experience with Gemtessa? How do you know it is working? Do you end up taking it indefinitely?

thanks very much

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@edinmaryland

I had a RP in early June 2026. I am 99% continent, but must do kegels daily. I notice stress incontinence recurring whenever I slack off. Best wishes to you.

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Profile picture for retireddoc @retireddoc

I am a 73 year old who underwent a RP 5 years ago for prostate cancer. I won't discuss my entire journey but, yes, I have had difficulties with incontinence the entire time. It got significantly better around 9 months after surgery but I had a setback when I had full pelvic radiation a year and a half after surgery.

What helped me was following the advice of a pelvic floor specialist, Vanita Gagliani "Life After Prostatectomy" available on Amazon. Becoming continent is more than pelvic floor exercises, it is also diet, teaching the brain/bladder to live without pads etc. The book is very scientific and proven with thousands of men helped. I recommend it.

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@retireddoc thank you for the book title for helping with continence. I am heading for RARP in 4 months and want to prepare as much as possible so that I can minimize incontinence, improve health and fitness. I do have a choice b/W SBRT without ADT or surgery and after many many months of research have decided on RARP at 68 years old.

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I was 68 years old when I had my RP. I did extensive research and was fortunate enough to have numerous colleagues in the field of urologic surgery and radiation oncology to confer with. Obviously, I chose surgery. Multiple reasons but primarily I wanted the cancer out ASAP and wanted to hold in abeyance the option of radiation if I had a local recurrence.

I pretty much recovered full continence around 9 months after surgery but because of a recurrence outside of the pelvis I eventually underwent pelvic radiation. The radiation is what worsened my incontinence.

Another suggestion. I don't know if you are sexually active and if that's important to you. Some men recover erectile function immediately after surgery and some later down the road. Unfortunately, I had total ED after surgery. Many urologists recommend taking 5mg Cialis shortly after surgery to enhance blood flow to the penis. Some also recommend using a vacuum erection device starting 4-6 weeks after surgery if you aren' having nightly erections. It helps stimulate the erectile tissue and keep every healthy.

Good luck to you!

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Seconding the use of a pump, even if you don’t plan on using the included tension bands to maintain an erection (of sorts) for sex.

The pump will help with keeping the tissue healthy, it may help disrupt the formation of internal scar tissue (I think), and it helps reduce shrinkage (at least in my case).

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My RARP was in January 2025; I have been doing Kegels since then, and was seen by a pelvic floor therapist, and I still have what I consider to be considerable incontinence. Urine discharge during orgasm is another side effect of my surgery that I would love to be rid of. I'm going back to MD Anderson, where my surgery was done, to have some tests done on my bladder and associated parts to see if they can find the cause and possibly a cure. Good luck in your journey.

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@ramblinman
We’re in a very similar boat. I had my RALP at the same time, and I do have leakage, and I do have leakage during orgasm.

I had three months of pelvic floor PT with a male incontinence specialist, and that helped, but now I’m back with another therapist (also a specialist in male incontinence) for a refresher.

Just curious…if you’re weighing your pads, do you mind sharing how much you’re leaking? I’m interested in what you’re defining as considerable incontinence.

I’m currently averaging about 55ml a day, which I think is very manageable and little more than minor annoyance, but I’ve read posts here from others who have a fair bit less than that and find it nearly intolerable. I’m curious where you fall, if you don’t mind sharing.

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Profile picture for TurtBean @turtbean

@ramblinman
We’re in a very similar boat. I had my RALP at the same time, and I do have leakage, and I do have leakage during orgasm.

I had three months of pelvic floor PT with a male incontinence specialist, and that helped, but now I’m back with another therapist (also a specialist in male incontinence) for a refresher.

Just curious…if you’re weighing your pads, do you mind sharing how much you’re leaking? I’m interested in what you’re defining as considerable incontinence.

I’m currently averaging about 55ml a day, which I think is very manageable and little more than minor annoyance, but I’ve read posts here from others who have a fair bit less than that and find it nearly intolerable. I’m curious where you fall, if you don’t mind sharing.

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@turtbean thanks for sharing. To be honest I don’t weigh anything. Currently I wear a medium pad and by the end of the day I’m usually dry without experiencing any leakage. But I’m not confident enough to not wear anything. During the day I control what I drink but if I play tennis, or any sport I leak quite a bit, also if I have a mocktail or cocktail in the evening I start to randomly have tiny spurts. Then when exiting the shower and boreparing for bed I still leak randomly until I lie down and I’m dry throughout the night. So I’m not in the worse condition compared to some of these gentleman sharing—I’m discovering that as I read. I just want better.. without having any additional surgery. I never had official PT just did on my own which I’m also discovering that I might be doing the exercises incorrectly. Btw I anal about hygiene so every time I leak I run and wipe down and change my pad hence no opportunity to weigh.

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Profile picture for retireddoc @retireddoc

I was 68 years old when I had my RP. I did extensive research and was fortunate enough to have numerous colleagues in the field of urologic surgery and radiation oncology to confer with. Obviously, I chose surgery. Multiple reasons but primarily I wanted the cancer out ASAP and wanted to hold in abeyance the option of radiation if I had a local recurrence.

I pretty much recovered full continence around 9 months after surgery but because of a recurrence outside of the pelvis I eventually underwent pelvic radiation. The radiation is what worsened my incontinence.

Another suggestion. I don't know if you are sexually active and if that's important to you. Some men recover erectile function immediately after surgery and some later down the road. Unfortunately, I had total ED after surgery. Many urologists recommend taking 5mg Cialis shortly after surgery to enhance blood flow to the penis. Some also recommend using a vacuum erection device starting 4-6 weeks after surgery if you aren' having nightly erections. It helps stimulate the erectile tissue and keep every healthy.

Good luck to you!

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@retireddoc thanks for sharing, I’m discovering we all have different challenges. I’m fortunate to only be dealing with minor inconveniences from incontinence. I have other major health issues that I’m coping with involving major nerve pain and multiple surgeries to fix so I guess I’m want the annoying one to go away. But I’m counting my blessings.

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Profile picture for ramblinman @ramblinman

My RARP was in January 2025; I have been doing Kegels since then, and was seen by a pelvic floor therapist, and I still have what I consider to be considerable incontinence. Urine discharge during orgasm is another side effect of my surgery that I would love to be rid of. I'm going back to MD Anderson, where my surgery was done, to have some tests done on my bladder and associated parts to see if they can find the cause and possibly a cure. Good luck in your journey.

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@ramblinman thanks for sharing and wishing you the best on your journey as well. I’m dealing with major spine issues and have been tolerating this annoying side effect since surgery but I’m realizing that I’m pretty fortunate.

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Profile picture for TurtBean @turtbean

Seconding the use of a pump, even if you don’t plan on using the included tension bands to maintain an erection (of sorts) for sex.

The pump will help with keeping the tissue healthy, it may help disrupt the formation of internal scar tissue (I think), and it helps reduce shrinkage (at least in my case).

Jump to this post

@turtbean thanks for sharing. Fortunate I’m only dealing with minor incontinence as I have other major health issues I’m coming with. Wishing you the best.

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