Improving Incontinence Post Therapy

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.

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 :-(.)

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.

@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

Thank you.

I would like to resurrect this thread some 🙂
prostratectomy Jan 15, 2025 catheter in for two weeks. I am now at the three month mark; or two and half month mark if this begins with catheter removal'
I have a few questions

1. I know everyone is different, I appreciate that there are many, many factors involved (age, skill of the surgeon, spread of the cancer and surgery.etc.etc) however, as a trend, what are most seeing in terms of gradual recovery/stages of continence recovery? I am doing better first thing in the morning then stress incontinence can take over the majority of my day (I cannot believe, I was told many go back to work two weeks following prostratectomy, I was leaking half the day. What kind of job could I have done?). The research shows great variability. Some men have no problems with incontinence, some have lifelong problems. It seems most do get better but with time. The research indicates 3-18 months for most males under 65 (I am 71) However, I have heard from a few that things can turn a corner around the three month period. I would love to learn more about other's experience here in terms of a timeline. Do I just need to hang in there for another 10-15 months? Long time, but if it is going to get better then I have to just wait it out.

2. Interventions: Kegels ( pelvic floor muscle and bladder retraining) are the foundational plan, paying close attention to doing both right, avoiding over-doing them and badly doing them. However, what else might help/be needed? I am on Gemtesa which could be helping. However, I have been approached with the possibility of the emsella chair and possible stimulation devices. My PT told me to avoid these, she has seen first hand disasters. I tend to believe her ( I trust her very much) . It is hard to believe that a muscle can be strengthened and re-programmed (two different animals) via some type of short cut like this. If I wanted my legs or arms to get stronger I may need to do more and more push up or curls every day. I can't imagine some device doing that for me. If I wanted to throw a ball straighter or juggle three balls, I can't see how some device can help me do that. Opinions?
3. Exercise has really been limited. I take a walk every day but that is about it. I tried riding my exercise bike a month out. I loved it, I felt like my old self, until everything went down the drain. After three days of only 30 minute work-outs ( I felt great) but stress incontinence tripled, I had trouble sleeping, my pelvic floor was rigid and sore. So I waited another month and tried it again, this time for only 20 minutes. Felt great again, then on day three, definite increase in stress incontinence. When I go for walks, stress incontinence kicks in after about 5 or 10 minutes. I wonder if I am better off limiting the walking- if I am pushing things too much or if I should continue walking and even using the exercise bike and consider 'threading a needle' In other words, the health, cardio and possible core benefits may catch up and help pelvic floor rehab or are these things detrimental and adversely affecting my progress? I can walk every day and plan on continuing doing so. I can wait another month and try the 'bike test' again. Any opinions and/or experience with this?

4. Any other advice suggestions in terms of getting through this period of time? If it boils down to really waiting it out, then I need to keep working on that. It is hard; I cannot work in public ( I do not want to be in front of others knowing I am leaking) When I have family over it makes things worse, just getting up and down, moving around especially after the morning activates stress incontinence. I know some get used to this. I know for some this is a way of life. But I sure do not want to get used to this.
I really appreciate everyone's feedback thanks

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.