Incontinence

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I am 6 1/2 months out of RP surgery, I've seen great improvement in leakage. Big improvement started at 4 months, and now I feel like the improvement has been slightly better every week. I seem to be able to walk and do mild physical exertion with minimal leakage, but every so often it reminds me I am still not 100% when it will blurt out getting out of the car, or in the shower bending over to wash my feet. Will this kind of leakage improve over time? Do I need to continue Kegels at the same pace I am doing now forever?

 

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It does get better over time!

I would not stop kegals until 100%...

Also keep walking and you can find other exercises that also help the pelvic floor (YouTube, Google and other threads on this forum)

I had my RP last September, so we are close, timeline-wise...


+God+bless+ and I pray for yours and everyone's continued recovery (self included)!

 

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I'm at a similar stage but 3 months out. Identical concerns to mdoshen and would be interested to know any comments.

 

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@mdoshen I too had my surgery about the same time as yours - mid August 2022. Your progress appears to be similar to mine in terms of leakage but my big improvement came about a month and a half ago. Without a lot of physical activity I can go with one light pad/shield per day and one at night. If I am more active during the day, I might need two shields. Prior to my surgery, surgeon told me that the majority of her patients reached close to or complete continence between 6-12 months. So my timeframe to continence appears to be in line with her other patient's experience. I am OK with that and continue to see/feel incremental improvements. I continue with my PT, kegel exercises, gym workouts, long walks, no coffee and moderate alchohol intake only on weekends. Good luck with your progress.

@Lysander If you have experienced similar improvements to what @mdoshen described at 3 months, you are in great shape! At three months I was still really wet. Just keep up the kegels and exercise and you should be fine!

 

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I guess I should thank everyone on this thread for bringing me back to reality. I am 5 weeks out from RALP and very impatient about my incontinence. I can make it through the night dry. I can sit for any length of time and make it to the bathroom dry. I just can't stand for lengths of time or walk for a mile or two and stay dry. I've asked this before and will ask it again to those of you who say you've experienced improvement. Is the improvement based on your consciously being able to hold the urine in thanks to all those kegels? Or is it based on your bladder just not leaking urine like it did before thanks to all those kegels? I can consciously hold it in for a while, but would much rather not have to think about it all the time. I'm hoping when I "improve" it will be due to the urinary tract just not leaking anymore.

 

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donegatf my experience is is gradually becomes non-conscious control but still requiring active clenching before coughing/sneezing/reaching etc. It seems to be a case of educating oneself to anticipate stress events.

 

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@donegatf I think you saw and commented in a prior thread where I described my experience and improvements with post RP incontinence. To answer your questions based on my own experience (up to this point), it is more what you describe in your former (first) question but a little of the latter also. I do have to be mindful of leaks when making abrupt movemments or being physically active. This means I have to contract my lower pelvic muscles to prevent or minimize leaks and the kegel exercises make this possible. However, I think my body is learning to manage this on its own because if I am standing around or even walking, I notice I am not leaking (or leaking as much ...) which wouln't have been the case 2 months ago. I hope this is helpful.

 

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Nobody above has stated their age or other preexisting issues. I think both are significant factors in rehab of RP. I’m 5 years out at 75 with PSA holding at <0.1 - the most important. I think many believe they will achieve total continence after some unknown period of time. Also I believe only exceptional athletes who can turn on individual muscles, including the pelvic floor group, will be able to become completely dry as before RP. It’s a life changer once that external sphincter is gone. I think most urologists give extremely positive scenarios to encourage future patient efforts. Also, kegels are forever, even if total dryness is met. You can’t let down unless you use other pelvic floor strengtheners like long distance walking, power yoga, squats with and without weights, etc. Although I do these exercises faithfully 3-5 days/week I still leak 1-2 pads/day depending on which things I do. Most of us suffer stress incontinence. One must except the intense changes they’ve withstood and hope cancer is held at bay.

 

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Forgot to add AUS way to get completely dry along with regular replacements!

 

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stryder - what do you mean by "regular replacements"? I had my AUS activated on 10/19/22 - not 100% successful but way better than it was. I'm 78. My non-nerve sparing RARP was on 5/27/21. I spent a year doing all the kegals, etc but not successful by my standards. I think that there is a high correlation between "non-nerve sparing" and need to do AUS

 

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Hey DrRick, my understanding of AUS is their time-limited breakdown requiring replacement surgery. Seems more dependent upon individual factors involving usage, surgeon skills, and luck. Haven’t heard about correlation of non-nerve sparing and need for AUS. Interesting question. I would like to hear any further feedback.

 

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Agreed - the life span is 8-10 years. Both surgeries were at Mayo Phoenix. The non-nerve sparing and AUS correlation came after several discussions with Dr. Wolter, who has a ton of experience with AUS, and Dr. Tyson who did the RARP

 

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Good Facebook group on AUS if you need more info

 

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What is AUS?

 

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Artificial Urinary Sphincter

 

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DrRick at which Mayo Clinic were your surgeries?

 

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I agree with stryder’s post. Age has a lot to do with it. I’ll be 68 in May, I’m coming up on 2 years since my PR surgery, did the exercises regularly, slight improvement, lots of embarrassment, still about 4 to 5 pads per day along with 1 depends brief. Doctor said leaking probably won’t get any better. AUS scheduled for March 29.

 

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stryder Mayo Phoenix campus on 5779 E. Mayo Boulevard in Phoenix.

 

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I am 6 1/2 months out of RP surgery, I've seen great improvement in leakage. Big improvement started at 4 months, and now I feel like the improvement has been slightly better every week. I seem to be able to walk and do mild physical exertion with minimal leakage, but every so often it reminds me I am still not 100% when it will blurt out getting out of the car, or in the shower bending over to wash my feet. Will this kind of leakage improve over time? Do I need to continue Kegels at the same pace I am doing now forever?

Had mine Aug 9th, 2022 at age 63. By end-September was at occasional leaks; by end-October was mostly 'dry.' By mid-December was at 99.9% Now, I wear a light pad every day, but that's more for peace of mind, I have not had any involuntary leakage incidents in 2023! Stopped doing Kegels regularly back in November; no alcohol or coffee, but I do drink Monsters quite regularly (caffeinated!) without any apparent issue. YMMV.

On the other hand, zero progress on the ED front!

 

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There is a study out: Patient-Reported Outcomes 12 Years after Localized Prostate Cancer Treatment https://bit.ly/3l7fRAy It followed a number of folks with prostate cancer for 12 years (note: the study began in 2009, so presumably wouldn't reflect any improvements in surgical technique since that date).

It shows that 20-24% of those who had RP still had some level of urinary leakage at 12 years (ugh!).