Is it Permanent?: I may have posted... - The Simon Foundat...

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Is it Permanent?

pgd-70 profile image
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I may have posted this previously, and if so I apologize. I'm wondering if my incontinence is going to be more permanent than anticipated. It's been over 2 years since my combined prostatectomy and diverticulotomy, and I'm still nervous about going without wearing some type of diaper. I have tried on occasion when I think I'm going through a dry period, but then the unfortunate happens. I'm almost to the point of giving in to diapers, and not go through the anxiety of what kind of underwear to wear on any given day. Purchasing high quality diapers is also a concern. I'm curious if anyone else experiences similar feelings, and how they manage. Thanks for any thoughts.

Dennis

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pgd-70
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incon1982 profile image
incon1982Administrator

Most urinary incontinence issues resolve in the 1st year post surgery. So it sounds like you may have an ongoing issue. Have you discussed it with your surgeon?

I have spoken to other men post-prostatectomy who have had long-term incontinence, and they are extremely disappointed. Some are angry, because they weren't told that this might happen. I do hope our surgeon discussed possible long-term consequences of the cancer and surgery with you.

If you don't lose a lot of urine when the unfortunate happens, perhaps you only need what is called a "guard", which can be worn in your regular underwear. It might be a bit less expensive than full-on briefs or tabbed diapers. But you also need to be comfortable in whatever you wear, and not be fearful of leakage. You want to go out and not have to worry! And enjoy life!

Not sure if this helps, but I do hope some of the other men might be able to offer some ideas of thoughts on this.

pgd-70 profile image
pgd-70 in reply to incon1982

Thanks for your reply and thoughts. Yes, I did discuss in great detail the possible risks from a prostatectomy. He did suggest some alternative approaches...radiation, watchful waiting, etc. However, since I had previous bladder issues, and a green light surgery 10 years ago, I decided to be done with it. He also indicated the removal of the large...grape fruit size, diverticulum could complicate things. As far as the right protection to wear and when, that always seems to be a toss up in my case. Some days I don't have a huge problem, and other days a complete flooding can occur. I guess I decided to prepare for the worse and hope for the best. I'm getting closer and closer to accept my issues, and get on with life. Now, I've developed a number of heart issues that has grabbed my attention even more than the incontinence. Again, thanks for thoughts. They are appreciated.

incon1982 profile image
incon1982Administrator in reply to pgd-70

You have the right thoughts - just keep moving forward in life! Get a product you feel comfortable with and that will keep everything contained, and keep going! I am sorry to hear about the heart issues. It seems like we just get through one thing, and life throws something else our way. This getting older stuff is really not for sissies!

RossBer profile image
RossBer

Had my prostatectomy just over 3 years ago. Total incontinence initially. Ended up going with external catheters, also known as condom catheters. Finally found Men's Liberty external catheters that attach to the glans with a hydrocolloid glue. These worked fantastically well.

I continued exercises to increase what was left of the voluntary sphincter and my abdominal floor muscles. Finally got 'leakage' down low enough to use adult diapers, initially 3 per day. Another year to reduce the leakage to where I could use shields in briefs. Got from 2 per day to 1 per day. Improvements stopped a number of months later.

I finally got tired of feeling wet all the time. I decided to go with the backup plan and scheduled surgery for an artificial urinary sphincter. I had the surgery 6 months ago. There is still some leakage during the day. I've been between 5 and 16 ml per day. I am sleeping with no leakage. I still need the shield, but am mostly dry and I no longer feel as though my penis is being pickled in piss.

Was told by the urologist that there might be some leakage with the artificial urninary sphincter under stress but that it would be much less. He was right. Am I happy with the results? Emphatically yes! Would I do it again? Yes. Would I recommend it to others? If they have need, I'd suggest they research it on-line and talk with their urologist.

Would also suggest getting a foam 'U' shaped neck pillow to sit on while recovering from the surgery since sitting on the incision is not a joyful experience!

I also got hit with E.D. and am going in for penile prothesis implantation surgery in a couple of weeks. The third stop in my 'New and Unusual Scars in New and Unusual Places" tour. In consultation with the urologist, I chose the malleable prothesis, so after the surgery I will have a constant 'erection' and be a human dildo!

Keep smiling! It makes them nervous wondering what you've been up to!!

Hi,

I know what you mean about the which underwear anxiety. That’s enough to give anyone high blood pressure.

I found a couple places that make and/or sell some excellent disposable pads , pull ons and adult briefs (diapers).

Northshore has megamax which is amazing for absorbency and several other great products. Tye Medical sells an amazing diaper and pad system. Garywear makes an excellent PUL waterproof but breathable diaper cover in several sizes and colors. Much cooler than vinyl pants.

There are several other places, Amazon has a ton of people selling as well.

Hope this helps. Hang in there. We are not defined by what protection we need, but by the person we are.

Kind regards,

Jim in Maryland

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