One year plus of incontinence after RP

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I have scanned prior posts of mens experience with incontinence following their RP. The experiences are all over the map which is to be expected and I appreciate everyone sharing. I am 66 years old, active, and in very good physical shape. I am 14 months out from my RP (August 2022) and like most have gone from no control to more control over the months. I am currently at around 16-20 ml per 24 hrs and use 1 light pad/day (maybe a second if doing physical activities) and 1 light pad at night for safety. Regarding PSA testing I am pleased to say that all tests have come back undetected. I realize from other's posts I am probably very fortunate to be where I am but I still leak enough, especially later in the day, which requires management. I am adverse to further surgeries and want to dry out naturally. I have had 6 mos of PT and do daily kegels and other pelvic focused exercises ...

So I am curious to know how many of you exceeded one year incontinence post RP, did it eventually dry up, and what did you do to hasten the process? Please, I am very aware of the sling and AUS options but am not focused on them now so recommending these procedures for me is premature.

Thanks and I do hope all of you are doing well! Bcarr

 

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I had my RP in September 2022. I am still using one to two pads per day and use a pull up at night. Better than the first 6 months but still not good enough. I’ve had lots of PT and kegels. I have a check up with my urologist in December. I may ask about the sling procedure, but I am reluctant to go ahead with it. If I had your profile, I’d wouldn’t opt for surgery.

 

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bcarr, I had my RP in early May of 2022, and my symptoms are exactly like yours. The one to two pads/24hrs are more of an inconvenience now, but not stopping me from any activities or holidays. Cheers ..

 

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I am 16 months post RP, 63 years old in excellent health and very active, the first 6 months were unbearable from a leaking perspective. I was in the dumps big time!

I did get Kegel PT and still do my Kegel exercises daily. For the most part I am dry, I only leak when I am active but I also leak if I have a slip or sudden reactive motion. I am so pleased with my state at the moment in comparison to my first 6 months, thanks God!

I walk 5 miles a day at a brisk pace across fairly hilly terrain and I use one light pad but during the day, normal activities and at night I am dry 99.9% of the time as noted previously.

I do play golf and I like to have a couple of drinks when doing so, I wear a heavier pad but have noticed that even that leaking has subsided over this past Summer.

I have noticed over the past several weeks my leaking during my walks has increased every so slightly from this past Summer, not certain but perhaps the chilly weather might be playing a part or maybe I am just on a bit of a downswing as it's not a straight line improvement. My urologist tells me that the healing and retraining can take up to 2 years.

But absolutely celebrate your small successes and improvements, it is vital to your psychological state. IMHO.

I wish you continued good luck and improvement, remember everyone heals differently and at different rates, so stay positive. That is critical.

 

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I am 14 months post RP surgery. I am 64, healthy and active. I stopped wearing pads six months ago. I get the occasional leak. Mostly stress incontinence, but very manageable. I occasionally have to change underwear. I stopped doing kegels. My question to you all is how is your ED? That is my main struggle now. Tried the pump, pills, and injections. Nothing seems to work.

 

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I am just over a year post op. I leaked like mad for a month but it cleared up quickly. Luckily I never leaked at night either, not once. A year on I am 99% leak free. Snezing, coughing etc no issues. No pads.
All I put it down to was my health (60 and 70 kg) and try to live healthy, but it's depressing for sure when you have it.
Kegals was the key for me every day 3 times a day, but as mentioned in my first post I have ordered a Kegal Hard devise that blitzes the manual way we all do it............so they say. I'll report back.

MODOSHEN, ED is terrible, depressing and makes me realise there isn't a god after all, but you have to keep at it. Again, I can get it up again now and it happened literally on the 1 year anniversery of my operation, in my spa pool haha.
In the early stages I used Trimix and it worked a treat. Don't need it now thankfully.
There are different mixes of iinjections so talk to your specialist. Don't give up!
Look at Kegalhard website and have a read. Mine hasn't arrived but when it does I'll report back.
menkegel.com/

Best of luck with your recovery.

 

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I am 55 yrs old and had my RP 18 months ago. I had a horrible time with incontinence. The first 6 months I had to wear a full disposable diaper and went through 6-10 a day. I had very little bladder control. I work as a carpenter and go to the gym 3X a week. No amount of kegels or other exercise seemed to help. Months 6-12 things improved greatly and I used 4-6 light pads. I had 38 radiation treatments months 13 and 14. That didn't change my incontinence much. I used the same 4-6 light pads. Months 15-18 have gone great and I am down to 2 light pads a day. Mostly at the end of the workday when I'm tired. When I get home I lie down for 15 minutes and I remain pretty dry. A few leaks if I laugh ,pass gas, or move in an awkward way. I recently went to the urologist to see if he could do anything about arousal incontinence.I still leak heavily if I give myself an erection ( Bimix injection) or my wife pleasures me. He prescribed me Imipramine. It has been a gamechanger. I have taken it for 2 weeks and barely leak a drop even after working a long day and enjoying a beer immediately after work. It did not work when I'm aroused but my day to day is back to normal. I can even hold my bladder for 30 minutes if there's a traffic jam on the ride home. I'm happy I tried the medication. I was against any medication at first but he persisted and it paid off for me.

 

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I had my RP on December 3,2019 and leaked for three years despite intensive PT. I had the sling surgery in January 2023 and have been basically dry since then. It was life changing surgery - for the better! Note: the recovery was painful and took six months for the tenderness to go away. That said, I wish I had done the sling surgery much, much sooner.

Good luck!

 

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Congrats bcarr on being <0.1. That’s the end (no pun intended) of RP. I’m 10 years older at 76, and in exceptional condition except for incontinence and ED (the bigge for me). I go to gym 4xwk doing weights and yoga for 2+ hours. Soon hope to increase my walking to 6mi/day like before the oven turned on from July-September here in the desert. Only doing 2mi now. On days of I intensely xeriscape in the desert concrete ground. I give you this information to explain that I go through 1-2pads per day unless I’m sedentary-which rarely happens. None at night. I’ve decided against sling/AUS for lots of reasons. One is not to provide a new Mercedes for a surgeon-just kidding. Many guys/victims on this blog swear by these surgical interventions. I’m uncomfortable with the recovery process, the possibility of problems like replacement- early or later, and still the need for pad+\day. Actually, at my age I’m comfortable with 2pads/day. Continue being undetectable and stay in great shape.

 

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For the first three months I found the incontinence very difficult. By about 6 months it had improved a bit and continued to improve for a year.On a quiet day I can get away with 2/3 light shields and like so many find it gets a bit worse in the evening when you are more tired. I sometimes use Pacey Cuff later in the day. I am unfortunately very erratic. Other days I can have my much more leakage for no apparent reason. I never have caffeine, don't have fizzy drinks and don't have alcohol. My biggest decision has to be made if I am travelling a long distance away from home. I hate wet pads and prefer the conveen on those occasions. I read recently a research article that 69 per cent of men prefer the conveen to pads and when my leakage is more severe I can identify with that. The dey skin and security are the issues for me. Of late I have perhaps become more inconsistent in doing the Kegels, I had COVID and still have a bit of a cough. Consequently, I have had to wear a light shield at night just in case of the cough. Previously I wore nothing at night and hope to get back to that soon. I won't be two years post op until the end of March 2024 so I'm going to give it a bit longer and get back to more consistent Kegels. Then I might consider the surgical option. ED is still an issue but I am fine with that now. I use the Vacuum Pump regularly and it works really well for me. I haven't really lost any erection length which I know is an issue for some. My wife also had a prolapse and was waiting for the op for two years. She is now 10 weeks post op and we have been able to be fully intimate for the first time in 2 years. At almost 69 years old the incontinence is the big issue for me.

 

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I am 14 months post RP surgery. I am 64, healthy and active. I stopped wearing pads six months ago. I get the occasional leak. Mostly stress incontinence, but very manageable. I occasionally have to change underwear. I stopped doing kegels. My question to you all is how is your ED? That is my main struggle now. Tried the pump, pills, and injections. Nothing seems to work.

Hi@mdoshen, ED is now non existent. I was able to achieve partial at around 6 months and full at 8-9 months, as I recall. Post RP ED was not the primary concern for me, incontinence was (and is). I did not have ED prior to my RP so that may play into my early recovery.

 

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For the first three months I found the incontinence very difficult. By about 6 months it had improved a bit and continued to improve for a year.On a quiet day I can get away with 2/3 light shields and like so many find it gets a bit worse in the evening when you are more tired. I sometimes use Pacey Cuff later in the day. I am unfortunately very erratic. Other days I can have my much more leakage for no apparent reason. I never have caffeine, don't have fizzy drinks and don't have alcohol. My biggest decision has to be made if I am travelling a long distance away from home. I hate wet pads and prefer the conveen on those occasions. I read recently a research article that 69 per cent of men prefer the conveen to pads and when my leakage is more severe I can identify with that. The dey skin and security are the issues for me. Of late I have perhaps become more inconsistent in doing the Kegels, I had COVID and still have a bit of a cough. Consequently, I have had to wear a light shield at night just in case of the cough. Previously I wore nothing at night and hope to get back to that soon. I won't be two years post op until the end of March 2024 so I'm going to give it a bit longer and get back to more consistent Kegels. Then I might consider the surgical option. ED is still an issue but I am fine with that now. I use the Vacuum Pump regularly and it works really well for me. I haven't really lost any erection length which I know is an issue for some. My wife also had a prolapse and was waiting for the op for two years. She is now 10 weeks post op and we have been able to be fully intimate for the first time in 2 years. At almost 69 years old the incontinence is the big issue for me.

Hi @hbrownlow First, thanks for your informative response. Its great when posts go into detail becuase its the details that are most helpful! You mention Conveen which I am not familiar with but from a quick web search it appears to be a type of external catheter. I used external catheters up to 6 months ago but stopped because my Surgeon/Urologist counseled they could be counterproductive to achieving continence because you lose the sensation of wetness which, as you and others may have experienced, helps to remind and encourage use of lower pelvic muscles to control leakage. I found this to be the case. Now, if I want the security of 100% dryness for a few hours I use a penile clamp. I also tried using a vacuum pump while I had ED but found it extremely uncomfortable and inconveient to use. Since I have regained erections the pump is not needed thankfully and I can focus on the remaining incontinence!

 

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Congrats bcarr on being <0.1. That’s the end (no pun intended) of RP. I’m 10 years older at 76, and in exceptional condition except for incontinence and ED (the bigge for me). I go to gym 4xwk doing weights and yoga for 2+ hours. Soon hope to increase my walking to 6mi/day like before the oven turned on from July-September here in the desert. Only doing 2mi now. On days of I intensely xeriscape in the desert concrete ground. I give you this information to explain that I go through 1-2pads per day unless I’m sedentary-which rarely happens. None at night. I’ve decided against sling/AUS for lots of reasons. One is not to provide a new Mercedes for a surgeon-just kidding. Many guys/victims on this blog swear by these surgical interventions. I’m uncomfortable with the recovery process, the possibility of problems like replacement- early or later, and still the need for pad+day. Actually, at my age I’m comfortable with 2pads/day. Continue being undetectable and stay in great shape.

Hi @stryder, Great feedback! Good that you are staying so physically active! Use it or lose it! Your thinking about the sling and especially the AUS procedure is right in line with mine! I appreciate that many have undergone these procedures and for most are very satisfied. But I really want to avoid any additional surgeries for a variety of reasons so I am hoping with daily kegels and other exercises recommended by my therapist and staying very physically active (walking, weight training, biking, scuba diving and my wife's never ending house and garden projects) I will achieve or get very close to full continence.

 

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I am 55 yrs old and had my RP 18 months ago. I had a horrible time with incontinence. The first 6 months I had to wear a full disposable diaper and went through 6-10 a day. I had very little bladder control. I work as a carpenter and go to the gym 3X a week. No amount of kegels or other exercise seemed to help. Months 6-12 things improved greatly and I used 4-6 light pads. I had 38 radiation treatments months 13 and 14. That didn't change my incontinence much. I used the same 4-6 light pads. Months 15-18 have gone great and I am down to 2 light pads a day. Mostly at the end of the workday when I'm tired. When I get home I lie down for 15 minutes and I remain pretty dry. A few leaks if I laugh ,pass gas, or move in an awkward way. I recently went to the urologist to see if he could do anything about arousal incontinence.I still leak heavily if I give myself an erection ( Bimix injection) or my wife pleasures me. He prescribed me Imipramine. It has been a gamechanger. I have taken it for 2 weeks and barely leak a drop even after working a long day and enjoying a beer immediately after work. It did not work when I'm aroused but my day to day is back to normal. I can even hold my bladder for 30 minutes if there's a traffic jam on the ride home. I'm happy I tried the medication. I was against any medication at first but he persisted and it paid off for me.

@cbarry Thanks for your response. Sounds like you got the incontienence issue pretty much controlled with the help of Imipramine. Question: Will you have to take Imipramine on a daily basis permanently to stay continent? Any side effects? Cost? Thanks and good luck with dealing with your ED.

 

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Good morning. I would imagine I have to take the Imipramine indefinitely. It started working from my first dose. I never asked the uroligist how long I would take the medicine or if it eventually would lose effectiveness. He asked me to do a trial run of 90 days. I originally went to him with the intent of getting an AUS. He said this medicine was a 50/50 chance of helping me instead of another surgery.The medicine is cheap $30.00 for 90 days . I live in Boston and have decent health insurance. The only side effect I have experienced is a dry mouth occasionaly. I totally prefer a dry mouth over wet underwear.