1. < Prostate Cancer

Improving Incontinence Post Therapy

Posted by retireddoc @retireddoc, Apr 7 9:35am

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.

badnewsforme | @badnewsforme | Apr 7 2:10pm

Retired doc, great post. Thanks for sharing your personal experience in an arena many of us belong to. After ADT I personally find motivation very difficult.

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spino | @spino | Apr 9 9:50am

My comment is directed toward those who are worried about incontinence, not those who are dealing with it. My own concern about incontinence only exceeded my concern about erectile dysfunction. I was geared up and focused on incontinence when I had my surgery. RALP and a catheter are a cautionary tale for anyone, I think.

I survived my (first) catheter, even though the pain in my penis after surgery had to be the pinnacle of pain I've experienced, and that probably has contributed to my difficulty with concern number two.

However, weighing male diapers (of which I have an apparently lifetime supply,) then pads (the ubiquitous ones for women work just fine,) I quickly discovered my volume of leakage was very low--and diminishing.

Yes, I even now still have very occasional climacturia, but the volume is incredibly low, urine is sterile not poisonous, and as an avid hiker and biker who has lived in the tropics, my existing clothes (and bedwear) have seen far worse. For me, this turned out to be a fear more than a problem and I am grateful.
My concern about doing "kegels"--which my pt refuses to call pelvic floor exercises since it's a largely female problem named for an old white man ;-)-- rapidly turned into amazement that my body could retrain itself after such a damaging abdominal surgery.

I may keep hanging onto the supplies or buy more when my condition changes--after all, as some of you know far better than I, this is a progressive disease, but I am grateful that this particular concern has remained minor, not compelling.

So, as I said, to those of you worrying that incontinence will ruin your life, it may, but not necessarily. Each day will have enough problems of its own. Don't pick your medical path by overfocusing on one or more of the quality of life issues. For today, my recently torn ankle ligament is far more preoccupying than incontinence, erectile dysfunction, or cancer, and for the last week until yesterday it was the sinusitis which I was reasonably certain was a very short term agony.

So here's to the journey, and embracing it one day at a time, so long as it is today. For my brothers who are fiercely doing pelvic floor exercises wondering why they haven't brought the hoped for relief, you have my respect and my empathy. May you find the grace and courage to live well however you find today. For those who only wish incontinence was your primary concern, you have my respect and my admiration, as you go where I have yet to go and have no interest in going, but may well go in the days yet to come. (But my guess is you might not have bothered to read this thread anyway :-(.)

REPLY
1 reply
krisw | @krisw | Apr 18 7:23pm
In reply to @spino "My comment is directed toward those who are worried about incontinence, not those who are dealing..." + (show)
@spino

My comment is directed toward those who are worried about incontinence, not those who are dealing with it. My own concern about incontinence only exceeded my concern about erectile dysfunction. I was geared up and focused on incontinence when I had my surgery. RALP and a catheter are a cautionary tale for anyone, I think.

I survived my (first) catheter, even though the pain in my penis after surgery had to be the pinnacle of pain I've experienced, and that probably has contributed to my difficulty with concern number two.

However, weighing male diapers (of which I have an apparently lifetime supply,) then pads (the ubiquitous ones for women work just fine,) I quickly discovered my volume of leakage was very low--and diminishing.

Yes, I even now still have very occasional climacturia, but the volume is incredibly low, urine is sterile not poisonous, and as an avid hiker and biker who has lived in the tropics, my existing clothes (and bedwear) have seen far worse. For me, this turned out to be a fear more than a problem and I am grateful.
My concern about doing "kegels"--which my pt refuses to call pelvic floor exercises since it's a largely female problem named for an old white man ;-)-- rapidly turned into amazement that my body could retrain itself after such a damaging abdominal surgery.

I may keep hanging onto the supplies or buy more when my condition changes--after all, as some of you know far better than I, this is a progressive disease, but I am grateful that this particular concern has remained minor, not compelling.

So, as I said, to those of you worrying that incontinence will ruin your life, it may, but not necessarily. Each day will have enough problems of its own. Don't pick your medical path by overfocusing on one or more of the quality of life issues. For today, my recently torn ankle ligament is far more preoccupying than incontinence, erectile dysfunction, or cancer, and for the last week until yesterday it was the sinusitis which I was reasonably certain was a very short term agony.

So here's to the journey, and embracing it one day at a time, so long as it is today. For my brothers who are fiercely doing pelvic floor exercises wondering why they haven't brought the hoped for relief, you have my respect and my empathy. May you find the grace and courage to live well however you find today. For those who only wish incontinence was your primary concern, you have my respect and my admiration, as you go where I have yet to go and have no interest in going, but may well go in the days yet to come. (But my guess is you might not have bothered to read this thread anyway :-(.)

Jump to this post

Like you I have suffered the consequences of radiation, in my case for ovarian cancer. I have found that the care for these consequences seems minimal compared to what is provided in the UK. I found an amazing support group, Pelvic Radiation Disease Association that I wish was available here. They provide a comprehensive booklet entitled "managing the bladder late effects of pelvic radiotherapy" that is available online for free from their website, click on their Resources tab. Mayo won't let my share the link in this comment.
Perhaps that can guide your efforts.
I agree that life is too rich to focus on one issue. Every day we breath is a gift.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 18 9:01pm
In reply to @krisw "Like you I have suffered the consequences of radiation, in my case for ovarian cancer. I..." + (show)
@krisw

Like you I have suffered the consequences of radiation, in my case for ovarian cancer. I have found that the care for these consequences seems minimal compared to what is provided in the UK. I found an amazing support group, Pelvic Radiation Disease Association that I wish was available here. They provide a comprehensive booklet entitled "managing the bladder late effects of pelvic radiotherapy" that is available online for free from their website, click on their Resources tab. Mayo won't let my share the link in this comment.
Perhaps that can guide your efforts.
I agree that life is too rich to focus on one issue. Every day we breath is a gift.

Jump to this post

@krisw, I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Allow me to post it for you:
Managing the Bladder Late Radiotherapy Effects of Pelvic Radiotherapy https://cdn.macmillan.org.uk/dfsmedia/1a6f23537f7f4519bb0cf14c45b2a629/4565-10061/mac18910-bladder-latefx-pr-e01-lowres-20210903-lk

REPLY
retireddoc | @retireddoc | Apr 18 9:16pm
In reply to @krisw "Like you I have suffered the consequences of radiation, in my case for ovarian cancer. I..." + (show)
@krisw

Like you I have suffered the consequences of radiation, in my case for ovarian cancer. I have found that the care for these consequences seems minimal compared to what is provided in the UK. I found an amazing support group, Pelvic Radiation Disease Association that I wish was available here. They provide a comprehensive booklet entitled "managing the bladder late effects of pelvic radiotherapy" that is available online for free from their website, click on their Resources tab. Mayo won't let my share the link in this comment.
Perhaps that can guide your efforts.
I agree that life is too rich to focus on one issue. Every day we breath is a gift.

Jump to this post

Thank you.

REPLY
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