From incontinence to an artificial ur... - The Simon Foundat...

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From incontinence to an artificial urinary sphincter.

RossBer profile image
5 Replies

This is my first post here.

I had a prostatectomy just over three years ago. The removal of my prostate solved three problems and created two more. Gone was the urinary retention and trouble urinating. Also gone was the prostate cancer.

What I got were the two side effects from a prostatectomy, erectile disfunction and incontinence. For many they regain continence and erections. I was one of those who did not.

Initially my incontinence was virtually complete. Four to Six adult diapers per day! A different approach was needed to get some semblance of a life back. Enter external catheters, also known as condom catheters.

A nice nurse helped with the sizing and gave me samples of several brands and types. I learned a lot about external catheters over the next couple of weeks. They are made from two materials latex or silicone. Your anatomy makes a difference. Men fall into two broad categories, showers and growers. Condoms work well on erect penises, it is what they are designed for. They work less well on flaccid penises and worst of all on flaccid growers, me.

I found that one of the silicone ones worked reasonably well and would usually last 12 to 14 hours if I was careful. I got my life somewhat closer to normal,

The flaccid penis and condom catheter problem still bothered me and looked for a better solution. I found Men's Liberty, A different type of external catheter that uses a hydrocolloid glue to attach to the glans of the penis. It works! 24 hours up to 48 hours or more without problems, I even got up to 72 hours once trying to see how long it would work!

While not the most economical solution, the confidence that I wouldn't leak or have other problems with it made the Men's Liberty worth every penny. I had my life back!

I continued to do my Kegel exercises and finally got my leakage down so i could return to adult diapers at two per 24 hours. Then down to one per day and finally transitioned to two or three shields per day. Finally I got down to one shield per day.

Progress stopped at from 12 ml. on a really good day to over 120 ml on an active day that placed more stress on the bladder. While better, it still felt like my penis was being pickled in piss. I wasn't dry, seemingly ever past the first few minutes.

I finally decided to go with the backup plan, the implantation of an artificial urinary sphincter. My urologist suggested it as an option six months after the prostatectomy since my incontinence was still so bad. I had hope and decided to wait until I could not get any more progress without it. That turned out to be almost 2 years later.

I got referred to the specialist in my HMO. He explained that the artificial urinary sphincter would help considerably, but would probably leak a little. He was right, some movements that place a lot of stress on the bladder do leak a few drops. Also if I sit on a lightly padded surface the right way, it presses on the artificial sphincter and allows some leakage.

It has been 6 months now. Worst case leakage is now 20 ml a day and the best has been 2 ml a day. Most days are between 6 ml and 14 ml. I still wear a shield during the day and mostly feel dry. At night I can sleep without any protection and am dry.

Would I get the artificial urinary sphincter if I had to do it over again? I probably would do things about the same, but I would get the artificial urinary sphincter six months sooner.

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RossBer
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5 Replies
wetone2 profile image
wetone2

I had the same procedure done, was a great help. A few years into this my valve started sticking, then the valve eroded thru the urethra.

THIS ended up causing four more bladder related procedures. Had to have it removed. Now back in diapers 24/7. Not trying to scare you but get it checked often.

RossBer profile image
RossBer in reply towetone2

Sorry to hear of your problems with the implant. This is the first instance I've ever heard about such a thing happening.

incon1982 profile image
incon1982Administrator

Thank you for sharing your story! I am sure this will be very helpful to many others.

Cotinus profile image
Cotinus

Thanks for this post. It's helpful to learn about your experiences. My incontinence has increased radically in the past year (prostatectomy 5 years ago) and I'm thinking about the AUS.

RossBer profile image
RossBer in reply toCotinus

It is an option that you should at least consider. While I'm not totally continent, I'm relatively dry. I seem to be settling in at about 10 ml. a day. This is easily handled by a shield and I feel dry. Ideal? No. Can I live with it? Most definitely.

Do consider that this is surgery done under a general anesthetic and you will have some new and interesting scars. There will be pain during the healing. The pain will mostly be in the perineum where the operation was done. Sitting will be painful for a couple of months. Suggest getting a foam U shaped neck pillow to sit on. You don't want to put pressure on the incision site.

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