Anyone still struggling with urinary incontinence after prostatectomy?

There are lots of success stories here.
I'm not one of them.

Many here were able to learn Kegel exercises to control their pelvic floor.
A physio should be your first visit - or even many YouTube videos.
I saw a physio for 6 months, without success.
But it certainly worked for a lot of others here.

If unsuccessful, an artificial urinary sphincter would be a solution - but they normally wait 12 months before considering that.
Except me. They gave up at 9 months.

After my surgery, I never had an incontinence issue. 3 1/2 years later, I had to have salvage radiation because my PSA started rising. Still no incontinence for six years, Then it started and got worse and worse and worse. I finally decided that I had it, and I had an AUS ( Artificial urinary sphincter) Installed in June. I am now 100% continent. I do have to press a button in my scrotum to pee, but that’s no big deal. No more pads. Some people that have had it done say they have a little leakage. I don’t, yet. It changed many things. I just don’t have to worry about accidents anymore.

I had the catheter in for rwo full weeks and was completely incontinent at first. Improved afterwards and took me 5+ months to be pad free.

Like you, I will suffer incontinence to be cancer free, but incontinence sucks
RARP Jan 2025
now 20 months post still leaking some mild stress and urge incontinence
Had catheter for two weeks. initially incontinence was bad was doing Kegels religiously however I was not doing them correctly most time overdoing them (anything worth doing is worth doing to excess)
I finally saw a pt with experience with males post rarp. She taught me to slow down, form over exertion, do two sets a day, she designed a progressive plan but taught me the value of resting ( I still to this day find myself overdoing the Kegals, I can feel the Pelvic Floor muscles tiring and sore. (I am a slow learner)
Anyway, I have made steady but extremely slow progress.
My urology practice gave me Gemtessa I am not sure if it helps but I am taking it.
At 20 months I leak after voiding, and when I strain ( lifting grandchildren, shoveling or something I leak some but it seems like I continue to make slow progress. I worry however, that I might have plateaud. I do not want any devices or more surgery if at all avoidable.

Please let me know if you want more information

Ed

I have minor leakage at 3 1/2 years after surgery, 2 teaspoons in 24 hour . Not much but to much to go without pad. I did pills. Kegels and recently a sling surgery, but still have that minor leakage.Sometimes we may have to pay a price to be cancer free. It is not what I wanted but so much better than many other men have to deal with. Just keep moving forward and be thankful for the blessings we have.

@stoney219
A couple of questions: how long ago was your surgery, and how much are you leaking now?

I had surgery in January. First two months were absolute total incontinence, then I saw improvement overnight about the time I started going to pelvic floor PT, in March.

I did that through June and saw steady improvement, but my May, when I started weighing my pads, I was still leaking 550ml a day (that’s around 2 cups!).

By July, I was down to 140ml a day, and my cancer care team assured me all was going to plan, just to keep at it, which I did.

Now, nine months after my catheter removal, I may leak as little as 20ml a day, or as much as 90ml, and the amount of fluid I drink doesn’t seem to matter, within reason. I’m very steady with that, and right now, I’m limited to water and one small cup of weak decaf tea each morning. No caffeine, no alcohol. I do my kegels (90 a day over three sessions) religiously.

I just had a pelvic floor evaluation, and surprise surprise, the therapist said I’m doing some of them wrong. Sometimes, I’m doing a lift, which is correct, but sometimes, I’m doing a push, which is incorrect and makes leaking worse. The problem is…both movements feel exactly the same to me, so that’s something I’m struggling with.

To compensate, she’s had me adjust the way I do my kegels, and I’m back for a follow-up in two weeks. We’ll see.

As far as management goes, I don’t mean to pay myself on my back, but even at its worst, incontinence hasn’t stopped me from doing a single thing I’d normally do. Now, I’m not out rock climbing and wrassling alligators, but my normal activities of maintaining two acres, going grocery shopping, cooking, being a musician who performs live occasionally, socializing, working (from home), going on vacation, I just put on the required undergarments, make sure I have spares with me, and get on with it. Right now, I can get through a day on either two slim shields or one medium pad.

I had prostate surgery last September and subsequently developed both stress and urge incontinence. I diligently performed pelvic floor exercises under the guidance of an experienced physical therapist who used biofeedback to confirm that I was engaging the correct muscles. Unfortunately, despite all my efforts, I have seen no improvement. I am beginning to fear that I may be among the 8–10% of patients who experience persistent incontinence after prostatectomy.

For now, I manage my incontinence with penile clamps during the day and a pad at night, without a clamp. I have consulted with an artificial urinary sphincter (AUS) specialist, but I am not yet ready to take that step—and may never be.

In the meantime, I am scheduled to undergo an InterStim trial very soon to address my pre-existing overactive bladder (OAB), which has worsened somewhat since surgery. I am hopeful that it will provide some relief.

I wish you the very best as you explore solutions to your own incontinence issues. I know firsthand how frustrating and challenging this can be, and I sincerely hope you find a treatment that brings you lasting relief.

I had a radical prostatectomy in 2015. Depsite all the kegels and PT, my urinary control never got better than stress incontinence (1-2 pads per day). It was livable, but defnitely affected quality of life. Finally, in 2023, I had my urologist perform a urethral sling surgery, which he told me was an option years before. It's a simple outpatient procedure with general anesthesia. When I woke up from the surgery, I was 100% continent. Last year, at this time, I underwent 8 weeks of salvage radiation for a local recurrence. I was warned that I might lose some of my continence. So far, that hasn't proven true. I am still pad free. My only regret is that I didn't do the sling procedure sooner than I did.

I had a Prostatectomy in 2006 . I had very severe incontinence. In 2008 I had the “ Male Sling” installed. It cut down my incontinence quite a bit , but I still had leakage. Now, 20 years later, I still use one medium pad per day. Incidentally, I’ve had 3 UTI’s since my surgery. They blame it on the pads that I have to wear.

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.