Improving Incontinence Post Therapy

Posted by retireddoc @retireddoc, Apr 7, 2024

This is an anecdotal personal experience/observation but it may be of help to some experiencing continued/increasing incontinence.

I had a RP in 10/21. Prior to surgery I began following a Physical Therapy regimen for pelvic floor/core stability and strengthening as outlined in a book by Vanita Gagliani " Life after Prostatectomy ....." available on Amazon. My incontinence steadily improved over the first year until I was not wearing a pad at home or during very short trips. I am very active-walking, gym and golf-and would wear a very light pad for stress incontinence during those times. After walking and playing 18 holes of golf sometimes the pad was almost dry.

After PSA elevation and recurrent disease in my pelvis, I had 37 radiation treatments in March/April 2023. I had been increasingly lax in doing my pelvic floor/core Kegels exercises in 2023. I noticed a significant uptick in my leakage over the year to the point I was using multiple pads during golf (3-4) and needing to wear one at home.

Not being in control of my disease, I decided I could control my incontinence to some degree. I started doing my exercises twice a day and Kegels every 2 hours like I did in 2021. After a month or so my incontinence improved significantly and I am now back to a single light pad on the golf course.

I realize this is unscientific but may be of help to some with increasing incontinence. My pelvic floor/core exercises take me 15 minutes in the morning and night. Good luck.

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

@retireddoc

I was 68 when I had my RP. I experienced ED and incontinence. If I remember correctly, my incontinence gradually improved to where I was wearing a light pad and playing 18 holes of golf (walking) and I had little leakage. Unfortunately, I later pelvic radiation and my incontinence got worse again.

Urinary incontinence is due to a lot of factors, as you indicated. The book Life After Prostatectomy and Other Urologic Procedures; 10 weeks to Continence by Vanita Gaglani was recommended to me by my urologist. Available on Amazon. Terrific book. She has extensive experience in treating incontinence. The book is very detailed. Recovering is more than just Kegels. I highly recommend it.

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How long did it take before you could more or less do normal things

I got the Vanita book and it helped however I really like the PT i am seeing she is helping
One of my big questions if there a point at which I am being counterproductive by pushing things? Today I had two little kids over and just getting up and down most of the day triggered significant stress incontinence.
Is it better to0 just go ahead and do these things and hope that the things will get better with time or is pushing it going to slow down my progress/? One definite thing is that all this stress incontinence compromises my bladder retraining. ( my bladder gets emptied by the activity as opposed to trying to work on a schedule
thanks so much for replying

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@kjacko

I had my RP a year and a half ago at age 71. I was one of the fortunate one in that I had ZERO incontinence issues. I attribute it to doing Kegels religiously before and after my surgery. After reading so many others who did Kegels, At my recent Followup appointment, my Surgeon told me only 10% of RP patients have zero issues, so unfortunately, you are not alone. Based on my experience, Kegels were the answer. BTW, I did 10quick and 10/10 second movements every hour I was awake. This was after the surgery. Before, 10 quick a couple times an hour. Today, I still pee a few times a night while sleeping. But it’s much different than when I had an enlarged prostate. I don’t have that “urge” feeling, if that makes any sense. I drink tons of water which no doubt affects everything. Keep the faith, you’ll get through it!🤞

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Thanks Kjacko
I appreciate a 71 y.o chiming in.
1. If I thought doing kegels every hour would help I would do them ( no offense) but I have been warned repeatedly that less is better, and I know for a fact that the two sets a day I am doing is fatiguing them some ( they get hot, fixed/stuck and a little painful . THis really is an area that could use some attention. I did some research and discovered that even the urological and scientific community has a recommendation in terms of how many kegels a day to do. I am doing two sets a day, One set of five steps (1/3, 2/3 and 3/3 up and then down, then 6 long ones followed by four sets of quick ones. I also do stretches and care exercises
Like you I had an enlarged prostrate than a cancerous prostrate ( and now no prostrate)
I do have a question about water intake
* prior to my surgery, I drank too little water, sometimes a cup of coffee in the morning and maybe nothing else all day. I remember my PCP telling me she could tell by my labs. I am not saying this is good. I should have been hydrating more. And I was very active.
* now I am told to drink half my weight in fluid ounces ( about 90 ounces a water day and stop a couple of hours before I go to bed. I have tried doing this and spacing it out but my bladder gets full in an hour sometimes. I believe my bladder size is probably normal. I am drinking more than water than before, maybe 40-50 ounces (which is more for me) but not 90 it seems impossible. Haas anyone else had any experience with this. and by the way Kjacko I am really happy that you did not have to deal with the incontinence thanks for taking the time to share your experience

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@dmccarthy104

67 when I had my NS RP. Did kegels before surgery and post. And some progress but limited. Most PT's in the Boston, Mass area had limited experience treating men, post RP. Finally found one and she's been a life saver.

During the day I am dry, and only during hiking and the gym do I wear a very thin pad.

Other tip is know which foods are bladder irritants. Removing these helped with leakage.

Good luck.

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Thanks I stopped coffee and watch spicy foods. which I miss, I am glad you finally found an experienced PT

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@chippydoo

I would suggest getting your bicycle seat fitted to your sit bones, if you haven't done so yet. Many local bike shops have sit boxes to assist with that situation. I ride a good quality seat that fits me properly that has a cut out which is easier on the urethra. While tough, movement is too important to not do so. I wish I could nap.

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I am using a recumbent exercise bike and put a pad on top of the hard seat that has a cut out (the big pad is sort of horse-shoe shaped). Maybe I will try bike shorts next time. The plan now is to re-try my test in another 3 weeks.
However I am concerned that I may be offsetting progress with continence because the bike riding really sets me back although it feels great
This is one of my questions for this group.
Is it better to try to take it easy. do not push things, try to get a handle on stress incontinence and bladder re-training and just give it time
Or is it just as good to try to do many of the normal things despite leaking a good portion of the time? There is value in doing the normal things. However, i do not want to push things if this will compromise my overall progress. I really want this incontinence to go away or at least significantly diminish. as an example, on days without using the recumbent exercise bike< I can go for a short 20-30 minute walk with minimal leakage (especially if it is in the earlier part of the day) However, if I go on a second walk later in the day, I am leaking fairly regularly. If I had rode the bike. I would leak with every single step

Big trade off for me. I used to start every day with 30-40 minutes on the bike, then a cup of coffee and then nonstop activity all day until after dinner. Now I am going slow, thinking about incontinence half the day
It may be I just have to wait this out and keep going slow.
I would not change anything I have done and do not regret the surgery. It probably added at least ten years to my life

However I remember asking what recovery was like and how soon I could go back to work. I was told that a lot of guys go back to work in two weeks. I was sort of expecting that or maybe 3-4 weeks since I am older. However, three months out and I am really not back to work, maybe 1/4 at this point. I do not want to be around others in public knowing I am leaking

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@edinmaryland

I am using a recumbent exercise bike and put a pad on top of the hard seat that has a cut out (the big pad is sort of horse-shoe shaped). Maybe I will try bike shorts next time. The plan now is to re-try my test in another 3 weeks.
However I am concerned that I may be offsetting progress with continence because the bike riding really sets me back although it feels great
This is one of my questions for this group.
Is it better to try to take it easy. do not push things, try to get a handle on stress incontinence and bladder re-training and just give it time
Or is it just as good to try to do many of the normal things despite leaking a good portion of the time? There is value in doing the normal things. However, i do not want to push things if this will compromise my overall progress. I really want this incontinence to go away or at least significantly diminish. as an example, on days without using the recumbent exercise bike< I can go for a short 20-30 minute walk with minimal leakage (especially if it is in the earlier part of the day) However, if I go on a second walk later in the day, I am leaking fairly regularly. If I had rode the bike. I would leak with every single step

Big trade off for me. I used to start every day with 30-40 minutes on the bike, then a cup of coffee and then nonstop activity all day until after dinner. Now I am going slow, thinking about incontinence half the day
It may be I just have to wait this out and keep going slow.
I would not change anything I have done and do not regret the surgery. It probably added at least ten years to my life

However I remember asking what recovery was like and how soon I could go back to work. I was told that a lot of guys go back to work in two weeks. I was sort of expecting that or maybe 3-4 weeks since I am older. However, three months out and I am really not back to work, maybe 1/4 at this point. I do not want to be around others in public knowing I am leaking

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The good news is they wouldn't be aware of it. You must have a great employer.

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@edinmaryland

Thanks Kjacko
I appreciate a 71 y.o chiming in.
1. If I thought doing kegels every hour would help I would do them ( no offense) but I have been warned repeatedly that less is better, and I know for a fact that the two sets a day I am doing is fatiguing them some ( they get hot, fixed/stuck and a little painful . THis really is an area that could use some attention. I did some research and discovered that even the urological and scientific community has a recommendation in terms of how many kegels a day to do. I am doing two sets a day, One set of five steps (1/3, 2/3 and 3/3 up and then down, then 6 long ones followed by four sets of quick ones. I also do stretches and care exercises
Like you I had an enlarged prostrate than a cancerous prostrate ( and now no prostrate)
I do have a question about water intake
* prior to my surgery, I drank too little water, sometimes a cup of coffee in the morning and maybe nothing else all day. I remember my PCP telling me she could tell by my labs. I am not saying this is good. I should have been hydrating more. And I was very active.
* now I am told to drink half my weight in fluid ounces ( about 90 ounces a water day and stop a couple of hours before I go to bed. I have tried doing this and spacing it out but my bladder gets full in an hour sometimes. I believe my bladder size is probably normal. I am drinking more than water than before, maybe 40-50 ounces (which is more for me) but not 90 it seems impossible. Haas anyone else had any experience with this. and by the way Kjacko I am really happy that you did not have to deal with the incontinence thanks for taking the time to share your experience

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Hi Edin. I am drinking more water than ever. At a couple of my yearly physicals it indicated that I was dehydrated. I never was told to drink half my weight but to increase my intake. I did read one report that recommended 24 ounces when you you wake up in the morning. My recent physical indicated no problem with hydration. My surgeon told me a couple of things: 1. Some people just produce more urine than others(that’s me, been that way since I was a kid). He also told me that my bladder may be a little bit softer since my surgery and that could contribute to my peeing issues. Like I said, I still get up a couple times at night, but it’s because I’m a light sleeper and then just go rather than the urge issue I had with my enlarged prostate. Again, best wishes.

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@kjacko

Hi Edin. I am drinking more water than ever. At a couple of my yearly physicals it indicated that I was dehydrated. I never was told to drink half my weight but to increase my intake. I did read one report that recommended 24 ounces when you you wake up in the morning. My recent physical indicated no problem with hydration. My surgeon told me a couple of things: 1. Some people just produce more urine than others(that’s me, been that way since I was a kid). He also told me that my bladder may be a little bit softer since my surgery and that could contribute to my peeing issues. Like I said, I still get up a couple times at night, but it’s because I’m a light sleeper and then just go rather than the urge issue I had with my enlarged prostate. Again, best wishes.

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Thanks K
I mkay be like you in some regard

how much water do you think you drink the rest of the day after the 24 ounces?

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@chippydoo

The good news is they wouldn't be aware of it. You must have a great employer.

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I am mainly self-employed however I also teach part time. I will not be in a classroom like this. I could do some other things but not that while incontinent

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@edinmaryland

I am mainly self-employed however I also teach part time. I will not be in a classroom like this. I could do some other things but not that while incontinent

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Thanks everyone for your input.
I know a big part of this is my being frustrated. I want to get better and want to make sure I am doing everything I can, and I am doing things productively.

It really seems that the 'field' has a little ways to go in terms of best practice and protocols for what happens after RARP. Good news; there are many treatments for the cancer and this is next in line I guess.

I am learning quite a bit from everyone out here on this site. I really appreciate it.

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@edinmaryland

Thanks K
I mkay be like you in some regard

how much water do you think you drink the rest of the day after the 24 ounces?

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64 Oz. Just a guesstimate.

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