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incontinence following prostratectomy

Posted by edinmaryland @edinmaryland, 2 days ago

Three and half months out from RARP (Jan 15, 2025) closer to three if going from date catheter removed (Jan 29, 2025) . I have seen some progress ( can sleep at night getting up once or twice and somewhat dry in the mornings, but that changes) . However stress incontinence persists, and I have periods of regression. I try to go for a walk (or two) every day. Doc advises to live my normal life and more or less deal with it. (if it does not get better in a year or so then consider other options). I am working with pelvic floor specialist pt.
I tried riding my exercise bike at one month out and then at three months out- after short workouts, incontinence is worse following both 'experiments' so i I have put that on hold.
I recently tried some gardening ( light digging,spreading mulch) incontinence gets worse and stays that way for a day or two or three. In addition to stress incontinence I experience leaking (leaking for a long time after urinating, leaking when laying down, leaking when I try to go to sleep. Doc tells me my sphincter is not closing. I am backing off any lifting and taking a day of rest however, this is very hard to sustain. Should I just not try much of anything.? I cannot work like I used to. I am not inclined to try a clamp ( I have heard on this list that they can fall off, sometimes they are painful, and I wonder if they really help)
I appreciate that everyone is different and it is hard to predict but waiting this out for possibly nine more months is hard if it turns out that way.
Anyone else have any tips for getting through this ordeal ( besides doing kegels)? especially anyone in their 70s
I am wondering about consulting with another urologist to see if there is anything that should be checked (blockage, obstruction)
Can anyone recommend someone that might specialize in incontinence following prostratectomy?

thanks much
incontinence sucks
I never had any incontinence whatsoever prior to this surgery so I do not believe it is age-related.

I have been warned not to try 'short cuts' such as the Emsella chair or stimulation devices as these have not proven effective and some have reported problems with these.

It may be that I have to wait it out and coming into month four might be early but these past 14-15-16 weeks have been very hard. especially when I hit setbacks. Any tips??

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

edinmaryland | @edinmaryland | 1 day ago
In reply to @peterj116 "I've heard nothing but good things about the artificial urinary sphincter. The male sling doesn't sound..." + (show)
@peterj116

I've heard nothing but good things about the artificial urinary sphincter. The male sling doesn't sound as effective (although it's less invasive in that it's installed & you forget about it.)

As many here will tell you, it's worth the effort continuing with the Kegel exercises if you can.
That would hopefully avoid surgery altogether, if you can master that.
We'll never get comfortable with the pads.
They're horrible in so many ways. I know three months of this seems a very long time. Each day is horrible. So the prospect of a year of this is not fun.

I've learned to just relax & sit in my recliner for large parts of the weekends.
It's pretty frustrating.

There are plenty of guys here who have either mastered the pelvic floor exercises or have had the artificial urinary sphincter (or sling) who should be able to share their experiences.

There is light at the end of the tunnel - and it's not a train.

Anyway, here's the male sling & the artificial urinary sphincter.

Jump to this post

Thanks again Peter
this is helpful
I know this is looking ahead but the information on sphincter versus sling may be on my agenda

Your comment: "I've learned to just relax & sit in my recliner for large parts of the weekends."
It's pretty frustrating. is spot on. I am spending a lot of time on a recliner or couch or chair in my driveway passing time. I do not want to get used to this. I do not want to feel like a feeble old man killing time. I love doing things, I love working.
the kegels do not require effort. I wish I could do 100s a day and that would speed things up. Turns out this would slow things down.
I really am still working on two main things ( besides patience)
1. doing kegels effectively and learning how to better relax pelvic floor muscles, not to over-train or over train or ' over use' more than under-train
2 trying to live a somewhat normal life- not getting too sedentary, keeping a level of fitness, not letting incontinence ruin everything but also accepting my limitations/restrictions. For example, I turned down two weddings, I am not having kids over for sleepovers, I am avoiding many public functions. even if I can hide or mask what is going on, I often need to be near a rest room and I am very uncomfortable knowing I am leaking when I am around others.
thanks very much peter

REPLY
edinmaryland | @edinmaryland | 1 day ago

WOW I never heard of this one,. this is great so now it might be artificial sphincter, sling or balloons
I will be doing my research thanks Jeff

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tuckerp | @tuckerp | 1 day ago

Not that I recommend this but I could not stand the leakage and the pads. I bought a coloplast condom and leg bag. Keeps me dry all day then at night I can sleep without it. I have done this for five years now. There are problems like the condom slipping off, sticking to the skin, kinks in the hose, etc. I just work out a fix and keep going. The Dr was not happy since he believes you quit trying to control the leakage. I just started PT therapy to see if I can non-surgically fix it. But this option gives me a full lifes activity. Gym, hiking, outside chores, pickle ball. Just cant wear shorts. I am 73.

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1 reply
jimchs | @jimchs | 1 day ago

I had my RP in 2015. Never leaked until last May when I had urethral surgery. Since then 100% no control. Lived with pads until October when doc gave me a clamp to try. It was a game changer although I know just a stop gap until permanent fix could be decided. I was able to get back to work, gym, social situations, parties and, life almost 95%. It sounds painful squeezing the penis but, not at all and, usually at the end of day starts to get raw but, for the most part I don't even know it's there all day. Leaps and, bounds better than wearing Depends and pads all day. Regular underwear and, one pad during day for clamp stress bypass. Don't wear at night so, have to deal with that.
Recommend a clamp to get back to living at least until you figure it out. Tried PT to no avail. Just weighing AUS vs. ProAct for myself now.

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2 replies
edinmaryland | @edinmaryland | 1 day ago
In reply to @tuckerp "Not that I recommend this but I could not stand the leakage and the pads. I..." + (show)
@tuckerp

Not that I recommend this but I could not stand the leakage and the pads. I bought a coloplast condom and leg bag. Keeps me dry all day then at night I can sleep without it. I have done this for five years now. There are problems like the condom slipping off, sticking to the skin, kinks in the hose, etc. I just work out a fix and keep going. The Dr was not happy since he believes you quit trying to control the leakage. I just started PT therapy to see if I can non-surgically fix it. But this option gives me a full lifes activity. Gym, hiking, outside chores, pickle ball. Just cant wear shorts. I am 73.

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thanks Tucker
I have a friend who relies on an external catheter and he reports similar issues as you, He can go for walks with his daughter and get out some but he reports it falling off sometimes.
I want to avoid this but it is definitely a back up plan for now.

You bring up a good point about trying. I read the book ten weeks to continence and big part of that program seems to be psychological, not giving in to emptying your bladder and has you wearing thinner and thinner pads each week (in addition to other things like PT) However, this just did not seem 'do-able' to me. Despite badly wanting to get better, it seems my bladder and pelvic floor muscles have a mind of their own

How long ago did you have prostrate surgery??

if you can find a pt trained to work with males after protratectomy I would recommend this
thanks so much Tucker

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1 reply
edinmaryland | @edinmaryland | 1 day ago
In reply to @jimchs "I had my RP in 2015. Never leaked until last May when I had urethral surgery...." + (show)
@jimchs

I had my RP in 2015. Never leaked until last May when I had urethral surgery. Since then 100% no control. Lived with pads until October when doc gave me a clamp to try. It was a game changer although I know just a stop gap until permanent fix could be decided. I was able to get back to work, gym, social situations, parties and, life almost 95%. It sounds painful squeezing the penis but, not at all and, usually at the end of day starts to get raw but, for the most part I don't even know it's there all day. Leaps and, bounds better than wearing Depends and pads all day. Regular underwear and, one pad during day for clamp stress bypass. Don't wear at night so, have to deal with that.
Recommend a clamp to get back to living at least until you figure it out. Tried PT to no avail. Just weighing AUS vs. ProAct for myself now.

Jump to this post

Thanks jmchs
I am resisting and resistant to the clamp but honestly if things do not get better in a month or so i will order one and try it

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tuckerp | @tuckerp | 1 day ago
In reply to @edinmaryland "thanks Tucker I have a friend who relies on an external catheter and he reports similar..." + (show)
@edinmaryland

thanks Tucker
I have a friend who relies on an external catheter and he reports similar issues as you, He can go for walks with his daughter and get out some but he reports it falling off sometimes.
I want to avoid this but it is definitely a back up plan for now.

You bring up a good point about trying. I read the book ten weeks to continence and big part of that program seems to be psychological, not giving in to emptying your bladder and has you wearing thinner and thinner pads each week (in addition to other things like PT) However, this just did not seem 'do-able' to me. Despite badly wanting to get better, it seems my bladder and pelvic floor muscles have a mind of their own

How long ago did you have prostrate surgery??

if you can find a pt trained to work with males after protratectomy I would recommend this
thanks so much Tucker

Jump to this post

Feb 2020 - LRARP. Zero PSA since. I have had to experiment quite a bit. Use a condom 2 sizes smaller. I put a dab of Vaseline on the spot it tends to stick. You cant coat it or it will not stick. I strap the tube to my thigh to keep it in place. I can do anything I did before. I have a few clamps but they are for sitting around doing nothing. Hard to wear past a couple hours.

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jeff Marchi | @jeffmarc | 1 day ago
In reply to @jimchs "I had my RP in 2015. Never leaked until last May when I had urethral surgery...." + (show)
@jimchs

I had my RP in 2015. Never leaked until last May when I had urethral surgery. Since then 100% no control. Lived with pads until October when doc gave me a clamp to try. It was a game changer although I know just a stop gap until permanent fix could be decided. I was able to get back to work, gym, social situations, parties and, life almost 95%. It sounds painful squeezing the penis but, not at all and, usually at the end of day starts to get raw but, for the most part I don't even know it's there all day. Leaps and, bounds better than wearing Depends and pads all day. Regular underwear and, one pad during day for clamp stress bypass. Don't wear at night so, have to deal with that.
Recommend a clamp to get back to living at least until you figure it out. Tried PT to no avail. Just weighing AUS vs. ProAct for myself now.

Jump to this post

I also use a clamp occasionally. You’re only supposed to keep them on for two hours at a time, But as long as you move it to a different position, you can continue to use it. Sometimes I forget to set my timer for two hours and I’ll find I’m three or four hours in and don’t even notice it’s on. I have had a couple of times though, after three hours I have noticed it’s on, and had to get it off right away.

I use the Wiesner clamp, got it on Amazon.

I go dancing with my wife on Saturday nights and I put it on for that. I also put it on when I go to the gym three times a week.

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edinmaryland | @edinmaryland | 1 day ago

Thanks so much Jeff and Tucker

I am keeping these comments in a file I have when and if I try the clamp out in fact I am thinking of getting the Wiesner as this is the second time someone has mentioned that specifically

thanks very much
not looking forward to it but I need a contingency (or perhaps I need to just try it and find out what it is like)

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edinmaryland | @edinmaryland | 1 day ago

I will likely get it and report back

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