Seek Virtual Support Group For Men Or Men & Women With Urinary Incontinence

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Hello, all. My name is Harvey. I'm a native New Yorker who was treated for prostate cancer 20 years ago.

Though I had side effects, urinary incontinence wasn't one of them.

In 2022, I started to experience bedwetting but it was manageable. By manageable I mean 2 or 3 times a week and when my urologist recommended Depends brand Pull Ups I thought I had the problem licked. I was wrong.

In 2023 my bedwetting increased to 5 or more nights a week. As I write this, the Pull Ups no longer provide complete relief. Although the pull up holds most of my urine, I wake up feeling wet on my left thigh and on my stomach, above Pull Ups' waistband. Additionally, there's usually a wet spot (4 inches in diameter) on my bed sheet.

When I was diagnosed with prostate cancer in 2003, I joined a support group for men diagnosed with the illness and it was enormously helpful. Instead of worrying in isolation, I saw that there were men in various stages of addressing the illness and that made me proactive. Because I was diagnosed early, I had the advantage of researching different treatments and meeting with doctors who offered the different treatments. That helped me choose the treatment that seemed most suited to my needs and also select a doctor whose temperment matched mine. And in January 2004, I had radioactive seed implantation.

I have no idea if my current bedwetting even has anything to do with my 2003 cancer diagnosis. I do know that being a member of a support group provided just that: support. I don't think I'd have made the choices I made back then without listening to and being heard by men who were also diagnosed.

If anyone reading this knows of an online support group for men or men and women with urinary inconotinence that currently meeting will you please reply. I will be enormously grateful. I hope that everyone reading my post is succeeding in their journey to resolve this and other health issues.
 
I don't know whether this is an "official" support group, but we do lots of encouraging, informing, sharing ideas and problems, so, Welcome. There are both men and women here, with many different reasons for their incontinence and many different levels of incontinence. I can make two suggestions: 1. See your doctor. If you still have a urologist, start there; if not, start with your primary care physician. Any change in bowel or bladder functioning should be checked into medically. 2. Check some of the older threads that deal with protective products. There are several other brands beside Depends, some of which make pull-ups that are designed for overnight use. I use Tena myself, but some of the men in the group may have other suggestions. (I am a woman.) I use washable/reusable bed pads over my bottom sheet just in case I have a particularly heavy wet night. There are also disposable sheet protectors that you probably could buy at the same place as you buy the Depends. I'm sorry that I can't be helpful if you are looking for a group that meets at regular intervals via Zoom or some other virtual meeting app. Perhaps someone else will be able to provide that information.
 
Hello, Larry. I appreciate the message. It was so brief. At your convenience, can you please provide a little more detail. I assume you are or were a patient of Dr. Sandhu. My posting on the NAFC board started "Seek Virtual Support Group For Men or Men & Women With Urinary Continence." Does Dr. Sandhu offer that ?
 
Diana said:
I don't know whether this is an "official" support group, but we do lots of encouraging, informing, sharing ideas and problems, so, Welcome. There are both men and women here, with many different reasons for their incontinence and many different levels of incontinence. I can make two suggestions: 1. See your doctor. If you still have a urologist, start there; if not, start with your primary care physician. Any change in bowel or bladder functioning should be checked into medically. 2. Check some of the older threads that deal with protective products. There are several other brands beside Depends, some of which make pull-ups that are designed for overnight use. I use Tena myself, but some of the men in the group may have other suggestions. (I am a woman.) I use washable/reusable bed pads over my bottom sheet just in case I have a particularly heavy wet night. There are also disposable sheet protectors that you probably could buy at the same place as you buy the Depends. I'm sorry that I can't be helpful if you are looking for a group that meets at regular intervals via Zoom or some other virtual meeting app. Perhaps someone else will be able to provide that information.
 
Hi, Diana. Thank you for your kind reply. I guess I was spoiled way back in 2003/04 when I had a support group to visit in person for something like 16 consecutive weeks. While the group wasn't co-ed it did provide a real bonding experience between the guys. And as I said in my posting on here, it helped me put things in prospective and at the time, make the best choice possible for a doctor to treat my prostate cancer.
The nice thing about this message board is that I can refer back and forth to any postings such as yours. I hope you're having a good day. I don't know where you are but we're due for very inclement weather here in New York.
 
Your situation is different than most of us here who have post
Prostatectomy issues. Dr Sandhu is a incontinence expert at MSK. I think you should see him or someone of his experience to
evaluate your condition.
I had an AUS implemented 3 years ago and am extremely satisfied
 
@HarvInNY as @Diana mentioned, this is a great group with a wide range of issues, not all stemming from prostate procedures. Perhaps, a spectrum of incontinence folks may help you think about your particular situation from a different set of eyes.

A recommendation is to initiate a discussion with your Uro or GP about getting evaluated for pelvic floor physical therapy. You likely had some after your procedure, maybe it is time to work with a PT again.
 
larryw61 said:
Your situation is different than most of us here who have post
Prostatectomy issues. Dr Sandhu is a incontinence expert at MSK. I think you should see him or someone of his experience to
evaluate your condition.
I had an AUS implemented 3 years ago and am extremely satisfied

Hi, Larry. Can I assume that you're not suffering from U.I. bedwetting and not needing disposable briefs or diapers ? Harv
 
That's correct, I had almost total incontinence after my RP.
My understanding is that those who choose radiation therapy can develop issues years after treatment. I don't think seed implantation is done alot anymore ,at least I haven't heard much about it recently . It's possible thats its the cause of your issues or maybe it's something else. I suggest you see someone who can diagnose your problems. If you need advice with diapers etc
I'm not your guy
 
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