Living with incontinence and ED - Prostate Cancer A...

Prostate Cancer And Gay Men

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Living with incontinence and ED

JinATL
JinATL

I’m looking to connect with other men who have incontinence and ED. It would be nice to share notes on how to live with both. It’s a lot to deal with as a 49 year old single gay guy

John

13 Replies

How long since your RP? I know a guy who got a double implant (AUS and penile implant)

JinATL
JinATL in reply to Tall_Allen

I have done research on the AUS and don’t like the risks. I talked to two men who had it and it failed badly. I don’t want to risk an infection or worse from it. I’m still trying to learn how to live with diapers and pads.

Daily cialis or it’s generic helps with the ED.

Tall_Allen
Tall_Allen in reply to JinATL

I know 2 men who have it who love it. The key seems to be an experienced urologist to place it.

How long since your RP?

JinATL
JinATL in reply to Tall_Allen

Coming up on 2 years.

Tall_Allen
Tall_Allen in reply to JinATL

That's a long time to live with those symptoms. I asked because there was a study that found that there can be some improvement even after a few years:

ncbi.nlm.nih.gov/pmc/articl...

I had major problems with both incontinence and ED and had (separately) an AUS and a penile implant.As you are getting some benefit from Cialis - I didn't - you would be unlikely to be resorting to a penile implant.

Regarding your incontinence, again it depends to a large extent on its severity - in my case my bladder would empty every time I stood up from the chair. Pads could not cope and life was pretty miserable. Prior to getting my AUS I used an external catheter (a condom-like sheath draining to a bag on my leg) and, whilst cumbersome, this was an acceptable halfway house until I could have the AUS and went a long way towards restoring my quality of life.

I'm not sure from your message what degree of incontinence you are experiencing and whether you find that pads, whilst tiresome, are a reasonable solution for you or whether you are looking for something beyond that. Happy to discuss further here or via pm if you feel that my experiences might help

JinATL
JinATL in reply to andrewc775

I’ll PM you. I am 100% incontinent when I sleep or during sex. About 25- 50% during the day when I’m not active and sit. 100% when I exercise or move around.

Have you tried doing 200 kegels/day? That exercise helped me immensely. ED is still an issue for me (4 months post RALP surgery), but I’m on a regimen of taking Cialis (5 mg) daily and using a vacuum pump everyday. It feels like I’m making progress, but it’s still a bit depressing.

JinATL
JinATL in reply to robmbones

I do kegels. Yes, it is depressing to not have things down there respond like they used to even with cialis. If I met another guy in the same boat I think a lot of the pressure would be off.

robmbones
robmbones in reply to JinATL

JinATL, I’m sorry that kegels aren’t working for you. Before I had my incontinence under control, I was a wreck. My husband has been very encouraging and supportive with my post-surgery ED, but I feel so incomplete. I hope things get better for you.

JinATL
JinATL in reply to robmbones

That’s awesome your husband is supportive. I find guys aren’t very willing to date someone with ED and incontinence. I have to wear some sort of protection 24/7 and sex can get pretty wet. I use pads, diapers and external catheter to manage it. Not ideal but I’m healthy

I had a radical prostatectomy in April 2016. I have been incontinent since then in spite of my efforts with Kegels and physical therapy. I was scheduled to have AUS implant surgery but it has been delayed repeatedly due to Covid-19. My situation is complicated by the fact that I am a US citizen in Montreal, Canada not a permanent resident of Canada . My US health insurance will pay for the surgery but because I am not in the Quebec health care system the surgeon would not be covered for malpractice in case anything were to go wrong. So they will not do elective surgery. For that I have to go back to the USA which I can't do right now.

As for ED, the situation is not so bad because my excellent surgeon was able to spare my sex nerves. I am able to get erections with a little help from Cialis (or Viagra) and more recently I have been doing trimix injections which work very well but are definitely not for everyone.

I hope this is helpful. I am also gay and am 70 years old. I haven't given up and neither should you. I intend to be healthy and sexually active for the rest of my life. Best wishes. Stay strong.

This is a reposting of comments made one yr ago: "I am questioning everything at this point. I had surgery in June of 2013 and the ED problems continue. I was clearly not told it would be this bad." Today nothing has changed. I am so glad to be cancer free. I have done, kegels, medicines and all other suggested treatment options. I also have to continue to wear a pad daily. I am just in a mode of acceptance.

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