Quality of life, 2 years post RALP ?

Posted by 71/502 @brucerichardson, 1 day ago

How would you rate your quality of life 2 years post RALP surgery? Scale 1-10.

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Profile picture for 71/502 @brucerichardson

@retireditguy also not a doctor. But I think they say 18 to 24 months. Took me about 2 1/2 years. Good luck,

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@brucerichardson -- I agree. I've also heard that recovery can take 2 years (or even more in some cases). I probably wasn't clear enough in my comment but what I was sharing was what my doctor told me about my odds at 1 year, not a couple of months. For me, the key point (which I probably failed to adequately communicate) was the idea that recovery often takes a long time, so he was (I believe) setting my general expectations rather than giving me a hard deadline. Thanks for clarifying that point! Best wishes.

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Profile picture for diverjer @diverjer

I sure hope I don't have to stay the way I am now on this incontinence issue, it irritating, annoying and frustrating. I do all the kegels exercises, about 360 a day. Hopefully can start pelvic PT in couple weeks. Doctor said he wouldn't send in a referral for PT until 3 months and that is needed for Medicare payments. Medicare won't pay for PT on self referral. I stopped caffeine and alcohol drinking. Didn't drink much alcohol anyway, so that doesn't bother me much. Was eating lasagna the other night and wanted a glass of wine, but drank a Sprite instead.
I believe it all stress incontinence. When I lay around on couch, sit and visit or sleeping there is no problem leaking. I get the urge to pee and make it to bathroom with few drips when getting up and first few steps. But through the day when I am moving around it's a different story. In morning I weigh pad and it's usually .1 to .4 oz. Once last week .7oz. I believe that all happens when I get up out of bed and a little stress drips. For whatever reason I am getting up 4 times a night and have a full strong stream! I stop drinking around 7PM - 8PM and go to bed at around 12AM. Don't understand how I pee so much at night, yet during the day it's all drips unless I been sitting and visiting. They say they have a mesh thing to put in and can do in an office visit, but doctor saying they like to wait a year. Suppose to really work, but have to wait a year. Oh well, I know people in worse shape and should complain so much. Just a real change if life style in short period of time.
Also in this heat high 90, feel like temp 110 I am starting to get a rash or itch.

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@diverjer After my RARP in 2015, I never recovered from stress incontinence. Went through 1-2 pads per day. It was pretty annoying, and somewhat limiting for activitites, and a constant worry. My urologist, about two years after the surgery, put the urethral sling surgery on the table and left the decision to me. I underwent a double hernia surgery about 6 months after the RARP, and really was not very keen on yet another surgery for a few years, so I just lived with the incontinence. Finally, in 2023, I had enough of the stress incontinence and did the sling (“mesh”) surgery. It was a complete success, and I recovered from the bruising and swelling (not much pain, just ugly looking priavtes) in a couple of weeks. No more pads. Big upgrade in quality of life.

I had a local recurrence last year (2025) and underwent 8 weeks of radiation therapy. My urologist told me to expect some loss of incontience, even with the sling. Glad to report that that has not happened. Still living without pads. Maybe I am a little more “drippy” than before, but hard to say if that is therapy related or age related (I’m 73). Either way, it is of minor concern compared to the stress incontience.

There is hope for surgically correcting stress incontinence.

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Profile picture for diverjer @diverjer

Thanks for the info, I may be inpatient wanting over this incontinence. I got catheter out May 12 so only been about 2 month and I have improved. Especially at night whike sleeping. Pullup seems dry, but does weigh a bit more .1 to .5 oz more, but I believe that happens when getting out of bed 4 times and walking to bathroom. Also, I should mention they did nerves bearing on right side and partial nerve sparing on left side. So that might make a difference

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@diverjer
One thing I noticed about this problem, that drives me nuts. I’ll go to the bathroom pee until my bladder is empty. Go back to my bedroom sit down on my bed and the moment I sit down I leak a spurt. The problem standing up is no big deal. The problem sitting down is consistent.

Since I don’t leak it all at night laying down, I don’t have to wear anything for protection.

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Profile picture for Jeff Marchi @jeffmarc

@diverjer
One thing I noticed about this problem, that drives me nuts. I’ll go to the bathroom pee until my bladder is empty. Go back to my bedroom sit down on my bed and the moment I sit down I leak a spurt. The problem standing up is no big deal. The problem sitting down is consistent.

Since I don’t leak it all at night laying down, I don’t have to wear anything for protection.

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@jeffmarc
Jeff - don't you have AUS implant now ? I am so sorry to hear that it did not solve a problem : (

I was thinking - if sitting down causes squirting it is probably because of sudden pressure to your pelvic floor and perhaps even device activation part ? How about you try sitting slowly or sitting first somewhat on one side than slowly leveling up on a chair ? Or, perhaps wait 5 min in the bathroom and try going again so the rest of the urine (however small amount) is released in the toilet.

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Profile picture for surftohealth88 @surftohealth88

@jeffmarc
Jeff - don't you have AUS implant now ? I am so sorry to hear that it did not solve a problem : (

I was thinking - if sitting down causes squirting it is probably because of sudden pressure to your pelvic floor and perhaps even device activation part ? How about you try sitting slowly or sitting first somewhat on one side than slowly leveling up on a chair ? Or, perhaps wait 5 min in the bathroom and try going again so the rest of the urine (however small amount) is released in the toilet.

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@surftohealth88
The AUS will be activated tomorrow. Then I’ll see what happens.

I noticed this problem a long time ago. The problem with waiting in the bathroom is that the bladder is constantly being refilled. The longer you wait the more you pee.

I have had my bladder checked by the doctor after peeing and it was empty.

Up till now, I have carried a small towel that I put in front of me when I sit down, otherwise I leave a spot on the edge of the bed.

I brought this up because I think it may be a common problem. I don’t have the problem when I’m standing up.

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@jeffmarc - I do have a similar problem. I can pee ‘til I’m empty, then do some small activity immediately afterwards, like sitting or reaching to turn the light switch off, and…squirt!

I can bed down, pick up my 20-lb stand mixer, carry it across the room and set it down, no problem, but just a minute or so later, turn partway to my left or right, and…squirt!

I spoke to my care team about it and they suggested I try “massaging” my penis after peeing, to get rid of any last little drips, but that hasn’t really done much good.

It’s bearable, more an annoyance than anything else.

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Profile picture for TurtBean @turtbean

@jeffmarc - I do have a similar problem. I can pee ‘til I’m empty, then do some small activity immediately afterwards, like sitting or reaching to turn the light switch off, and…squirt!

I can bed down, pick up my 20-lb stand mixer, carry it across the room and set it down, no problem, but just a minute or so later, turn partway to my left or right, and…squirt!

I spoke to my care team about it and they suggested I try “massaging” my penis after peeing, to get rid of any last little drips, but that hasn’t really done much good.

It’s bearable, more an annoyance than anything else.

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@turtbean
My guess would be that activating obliques causes squeezing bladder and squirting. Perhaps some very good PT would know how to fix that or what muscles need to get stronger to make contra-balance to obliques. Did you try activating Kegel before twisting ?

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Profile picture for Jeff Marchi @jeffmarc

@surftohealth88
The AUS will be activated tomorrow. Then I’ll see what happens.

I noticed this problem a long time ago. The problem with waiting in the bathroom is that the bladder is constantly being refilled. The longer you wait the more you pee.

I have had my bladder checked by the doctor after peeing and it was empty.

Up till now, I have carried a small towel that I put in front of me when I sit down, otherwise I leave a spot on the edge of the bed.

I brought this up because I think it may be a common problem. I don’t have the problem when I’m standing up.

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@jeffmarc

Good luck tomorrow Jeff 🍀🌞 !!! : ))))

May your AUS work perfectly and may you be free from any squirting 100 % !!! : )))

Let us know how it goes !!! : )))

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Profile picture for Jeff Marchi @jeffmarc

@surftohealth88
The AUS will be activated tomorrow. Then I’ll see what happens.

I noticed this problem a long time ago. The problem with waiting in the bathroom is that the bladder is constantly being refilled. The longer you wait the more you pee.

I have had my bladder checked by the doctor after peeing and it was empty.

Up till now, I have carried a small towel that I put in front of me when I sit down, otherwise I leave a spot on the edge of the bed.

I brought this up because I think it may be a common problem. I don’t have the problem when I’m standing up.

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@jeffmarc copy that. Good luck tomorrow, JefF.

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I'm 14 months post RARP and I would rate my life as an 8 on a 1-10 scale.

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