Radical removal of prostate surgery- urinary incontinence problems
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Archives1
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Hello all. First post for me.
I'm only 6 weeks post-op RP and have the following issue. I stay completely dry a night and get up 2-3 times to go over my 8 hour sleep. It used to be once a night in the good old days and I'm told that this will likely improve over time. Not a big deal. Sitting at my desk or watching TV? No problems. But if start walking around (as in just walking around while lecturing at my job or walking outdoors), it seems like a not-quite-constant dribble. Every few minutes or so I feel a few drops. Over the course of an hour or more the pads I'm using can get quite full. Or so it seems to me. I have no idea what a full one looks or feels like. It seems like as fast as I'm producing urine, its coming out. I'm doing Kegels but probably not enough. (Got to work on that) I want to start road-bike riding again and assume the same thing will happen while riding. How common is this? Have any of you gone through it it? Is this just a "matter of time" sort of thing or is there something else I could be doing to improve things. Age 65 and in otherwise excellent health. Thanks in advance.
I'm only 6 weeks post-op RP and have the following issue. I stay completely dry a night and get up 2-3 times to go over my 8 hour sleep. It used to be once a night in the good old days and I'm told that this will likely improve over time. Not a big deal. Sitting at my desk or watching TV? No problems. But if start walking around (as in just walking around while lecturing at my job or walking outdoors), it seems like a not-quite-constant dribble. Every few minutes or so I feel a few drops. Over the course of an hour or more the pads I'm using can get quite full. Or so it seems to me. I have no idea what a full one looks or feels like. It seems like as fast as I'm producing urine, its coming out. I'm doing Kegels but probably not enough. (Got to work on that) I want to start road-bike riding again and assume the same thing will happen while riding. How common is this? Have any of you gone through it it? Is this just a "matter of time" sort of thing or is there something else I could be doing to improve things. Age 65 and in otherwise excellent health. Thanks in advance.
Archives1
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@MikeF1
I’m 9 days post surgery, catheter was removed two days ago. I basically feel like I’m leaking all the time. It’s not as bad at night, I am mainly dry as long as I get up and try to urinate each time I wake up. During the day I have a regular dribble and then occasional spurts, I try to urinate everytime I stand up after sitting for a while but by the time I get to the bathroom I’ve already leaked most of it so I only pee a tiny amount. I haven’t really yet had a full bladder and a regular urination. When I stand up and walk it’s much like you described. I have little control at all. I started Kegels but nothing really has changed. I know it’s early days, but this is very frustrating.
I’m only 50 and am having a hard time dealing with this mentally. Welcome any advice folks have.
MikeF1 said:
I’m 9 days post surgery, catheter was removed two days ago. I basically feel like I’m leaking all the time. It’s not as bad at night, I am mainly dry as long as I get up and try to urinate each time I wake up. During the day I have a regular dribble and then occasional spurts, I try to urinate everytime I stand up after sitting for a while but by the time I get to the bathroom I’ve already leaked most of it so I only pee a tiny amount. I haven’t really yet had a full bladder and a regular urination. When I stand up and walk it’s much like you described. I have little control at all. I started Kegels but nothing really has changed. I know it’s early days, but this is very frustrating.
I’m only 50 and am having a hard time dealing with this mentally. Welcome any advice folks have.
Archives1
Staff member
Hello MikeF1, and welcome. There are many in this group who have gone through exactly what you’re experiencing. Many of us saw a gradual improvement in bladder control over the first year or so post-op. Emphasis on “gradual”. The Kegels should help, and many here think that walking helps as well. To the extent you can, avoid caffeine and alcohol. Seeing a PT who specializes in Pelvic floor issues and incontinence will be a big help. Seems like a contradiction, but recovery takes both effort and patience. Best of luck! Let us know how you progress.
Archives1
Staff member
Oops. I forgot that I posted before. Duh! I'll blame post-op, anesthesia-induced brain-farts. Beer and coffee are two of my favorite things (just not at the same time.) Life can be so cruel. I will say that I have to agree with someone else who said they felt that the incontinence issue was understated pre-surgery. My urologist went as far as to say "Oh, you won't have any." He may have said "probably" but that's not my recollection.
Archives1
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@MikeF1 65 here and no problems at all prior to RP. At 2 months post-op. i think i'm getting better. But certainly nowhere near i where i want to be. In bed, i could theoretically get by with no protection, but the problem comes in getting up and gravity kicks in. And now, I'm getting up about every 2 hours with the urge to go. I got a kitchen scale for 10 dollars to measure my daily output which is around 5 ounces. I just got it after 2 months, so don't know if that's an improvement. But, everyone here is correct in saying its a matter of time, and its impossible to gauge how long it will be to full continence. I have 2 online friends in Australia who were immediately continent. Do they do things differently there? I'm still at the point that I wish i didn't get the surgery and would take my cancerous prostate back if I could go back to normal functioning. And, I want to get back on my mountain bike but am told it will be at least 6 to 8 months. Fortunately, I retired a week before my diagnosis, so don't have to worry about the incontinence at work. However, I also don't socialize and only go out for food and doctor's appointments. I'm hoping that a year from now, this will all be resolved and i can just look at it as a bump in the road. Just at 65, a year seems like a very long bump.
Archives1
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@jim11776
Jim, you may want to try the external catheters with a leg bag. It's a little more complicated than pads and pull-ups, but the bag allows you to see how much liquid you have expelled and is much easier on your skin. News about the external catheters is beginning to make its way into a couple of threads on this site. I use mostly external catheters with leg a bag but switch over to the pads if I run short on catheters. I do so much want all men to be successful and get over
the depression and discouragement. Some of us had the surgery on the surgeon's worst day and our controlling nerves are messed up. So, our focus is fixed on managing the daily waterfall. Think: "RECOVERY"!! MASTER whichever method you would like - READ - PRAY - MAKE NOTES. I'm not against pads. I use them sometimes. But, I've found that the external catheters (EXTERNAL - NOT INTERNAL) work better for me. BTW...I'm 88 and have been at this for fourteen years. I still enjoy life, doing yard work, helping with watering the flowers, etc.
Jim, you may want to try the external catheters with a leg bag. It's a little more complicated than pads and pull-ups, but the bag allows you to see how much liquid you have expelled and is much easier on your skin. News about the external catheters is beginning to make its way into a couple of threads on this site. I use mostly external catheters with leg a bag but switch over to the pads if I run short on catheters. I do so much want all men to be successful and get over
the depression and discouragement. Some of us had the surgery on the surgeon's worst day and our controlling nerves are messed up. So, our focus is fixed on managing the daily waterfall. Think: "RECOVERY"!! MASTER whichever method you would like - READ - PRAY - MAKE NOTES. I'm not against pads. I use them sometimes. But, I've found that the external catheters (EXTERNAL - NOT INTERNAL) work better for me. BTW...I'm 88 and have been at this for fourteen years. I still enjoy life, doing yard work, helping with watering the flowers, etc.
Archives1
Staff member
@DanCarr i started using the external catheter when i was walking up to 8 miles a day. seems like walking makes for more dribbling. the catheter worked great the first time. the last time was a disaster. unfortunately, I overdo everything, and since i can't ride my bike, i overdid walking and was up to 8 miles within 2 weeks of the surgery. (I got achilles tendonitis and a brace. and still haven't started walking again, 6 weeks later). the point is, my ankle started to hurt about 4 miles away from home and at the same time, the catheter disconnected from the bag, and it got very sloppy and very wet and no where to fix it on the trail and i got very angry. So, i forgot about it. But maybe I can try it just around the house and see how it works out over night. thanks for the idea, Dan.
Archives1
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@jim11776
I can't imagine walking 8 miles a day, 2 weeks after surgery. Sheeee! I can picture the disastrous loss of the catheter. If I were going to walk one mile while wearing an external catheter, I would make sure to be wearing a penile clamp. I have great skill at slipping off the catheter. It's secure for a few hours. So...I carry the clamp in my left front pocket 24-7 (pants and PJs). (I don't wear the clamp while sleeping. I sometimes wear PJs 24/7.) THANKS FOR SHARING!
I can't imagine walking 8 miles a day, 2 weeks after surgery. Sheeee! I can picture the disastrous loss of the catheter. If I were going to walk one mile while wearing an external catheter, I would make sure to be wearing a penile clamp. I have great skill at slipping off the catheter. It's secure for a few hours. So...I carry the clamp in my left front pocket 24-7 (pants and PJs). (I don't wear the clamp while sleeping. I sometimes wear PJs 24/7.) THANKS FOR SHARING!
Archives1
Staff member
I too use the external catheter occasionally. I have never experienced it slipping off. There are 5/6 different diameters and for me getting it off is the problem. I always need to use adhesive spray remover. I am at a stage where at home working outside a couple of light shields per day is sufficient even when doing yard work. My main challenge is blowing my bagpipes. That's when I tend to use the conveen and leg bag. I guess it's the constancy of the downward pressure when blowing that causes the problem. I have also measured the weight of my pads as a way of measuring progress. On a sedentary day like a Sunday I can be as little as 2mls. On a more active day it can be 20 to 30 MLS. Then on those evenings when I go to band practice could be as much as 100 mls.
To those who have posted recently and are only a few weeks post op it is a question of patience. And all of us who have been through understand the mental challenges. There are some who are virtually continent immediately but those are rare cases and should never be the expectation. Many apparently recover within 3 to 6 months but for some it can take a year to 18 months or even up to 2 years. For three months I personally saw little improvement and then gradually things got better. I am now 14 months post op and as indicated above not totally continent. Minor leakage caused by stress incontinemce can be a permanent situation for up to 20 per cent of men. And a lot of men wear a light shield as a precaution when going out. For me I could live with that. But I have kept an open mind on further surgical intervention eg sling should improvement plateau. To the newcomers who have recently gone through RP note too that treatment regret is common but bear in mind that all cancer treatments have side effects and those who has had radio therapy with androgen deprivation also experience unpleasant side effects.
I am not minimising the emotional impact and we haven't mentioned the other big side effect of ED. Indeed the mental impact hit me hardest at about 1 year out and I have had some counselling which has really helped. I do mindfulness most mornings, keep a gratitude diary and generally keep as active as possible. I also try to ensure that the IC issue will not prevent me for doing the things I want and need to do.
Sorry for the long ramble. I simply want to encourage the couple of guys who have posted recently post op. I found this forum really helpful and many folks, both male and female post messages when you need a listening ear and a word of encouragement.
To those who have posted recently and are only a few weeks post op it is a question of patience. And all of us who have been through understand the mental challenges. There are some who are virtually continent immediately but those are rare cases and should never be the expectation. Many apparently recover within 3 to 6 months but for some it can take a year to 18 months or even up to 2 years. For three months I personally saw little improvement and then gradually things got better. I am now 14 months post op and as indicated above not totally continent. Minor leakage caused by stress incontinemce can be a permanent situation for up to 20 per cent of men. And a lot of men wear a light shield as a precaution when going out. For me I could live with that. But I have kept an open mind on further surgical intervention eg sling should improvement plateau. To the newcomers who have recently gone through RP note too that treatment regret is common but bear in mind that all cancer treatments have side effects and those who has had radio therapy with androgen deprivation also experience unpleasant side effects.
I am not minimising the emotional impact and we haven't mentioned the other big side effect of ED. Indeed the mental impact hit me hardest at about 1 year out and I have had some counselling which has really helped. I do mindfulness most mornings, keep a gratitude diary and generally keep as active as possible. I also try to ensure that the IC issue will not prevent me for doing the things I want and need to do.
Sorry for the long ramble. I simply want to encourage the couple of guys who have posted recently post op. I found this forum really helpful and many folks, both male and female post messages when you need a listening ear and a word of encouragement.
Archives1
Staff member
@Hbrownlow, thanks for the helpful perspective. It’s been hard, even though it’s only been a few days. I keep thinking I’m doing something wrong. I rarely actually feel the urge to urinate before it starts leaking out. I constantly rush to the bathroom every 15-20 mins to have most of it squirt out into the pad and then only pee a couple of tablespoons on the toilet. When I stand ir walk around I don’t get the urge at all and just constantly leak out. Should I be trying to time my trips to the restroom or see if I can gold until my bladder gets full? Which I don’t think is ever going to happen. Or do I just need the accept the situation and give it some time to get better? I tried to get out today and do something normal like grocery shopping. It was hard to get comfortable walking around interacting with people while constantly leaking, and then I go home and realized my pas leaked through my underwear and shorts, utterly demoralizing.
Are Kegels and possibly PT the answers? Should I be trying to do something to control my urinating besides those? Should I keep rushing t0 the bathroom or just accept peeing into the pad?
-Torch
Are Kegels and possibly PT the answers? Should I be trying to do something to control my urinating besides those? Should I keep rushing t0 the bathroom or just accept peeing into the pad?
-Torch
Archives1
Staff member
Torch I leaked as you described for about three months. I never had to pee normally during the day as I had leaked so much. I only did so during the night and initially that was one hour after going to bed and then an hour after that. Eventually that settled and I was dry at night and now only up once during the night and sometimes not at all.
I would try the external catheter when you are going out. And yes certainly do your levels. A visit to a pelvic floor physio will help to ensure you are doing them properly.
I understand the stress and even at just over a year I can be stressed when I have a leek that has taken me by surprise
I'm afraid there's no short cut and you just have to try to be patient.
I would try the external catheter when you are going out. And yes certainly do your levels. A visit to a pelvic floor physio will help to ensure you are doing them properly.
I understand the stress and even at just over a year I can be stressed when I have a leek that has taken me by surprise
I'm afraid there's no short cut and you just have to try to be patient.
Archives1
Staff member
@Torch
Torch, you may have more peace and success if you concentrate on controlling the constant flow, whether it's surging or dripping.
Dripping occurs when the bladder is essentially empty but the bottom valve is wide open and passing along everything the kidneys drop into the bladder. The kidneys don't surge. The kidneys drip. The bladder deals with what has dripped into it. Surg or drip.
The penile clamp (properly placed and properly set) is the surest and quickest solution for shutting off surge and drip...for a short period of time. Practice installing by feel, and not by sight. The clamp takes the place of the valve you were born with at the bottom of the bladder. If the clamp is too loose, it will drip and wet everything down to your shoes. (BEEN THERE! - DONE THAT!) CARRY THE CLAMP WITH YOU 24-7 ALWAYS IN THE SAME POCKET! If the clamp is too tight, it will feel "too tight" and the end of your "down there" will begin to feel cold.
IN SHORT: master the use of the clamp and solve a lot of problems in keeping dry.
Torch, you may have more peace and success if you concentrate on controlling the constant flow, whether it's surging or dripping.
Dripping occurs when the bladder is essentially empty but the bottom valve is wide open and passing along everything the kidneys drop into the bladder. The kidneys don't surge. The kidneys drip. The bladder deals with what has dripped into it. Surg or drip.
The penile clamp (properly placed and properly set) is the surest and quickest solution for shutting off surge and drip...for a short period of time. Practice installing by feel, and not by sight. The clamp takes the place of the valve you were born with at the bottom of the bladder. If the clamp is too loose, it will drip and wet everything down to your shoes. (BEEN THERE! - DONE THAT!) CARRY THE CLAMP WITH YOU 24-7 ALWAYS IN THE SAME POCKET! If the clamp is too tight, it will feel "too tight" and the end of your "down there" will begin to feel cold.
IN SHORT: master the use of the clamp and solve a lot of problems in keeping dry.
Archives1
Staff member
I use an external when flying my glider. Its fairly common. Several hours flying and staying hydrated has its complications. No bag though. The tube exits the bottom of the glider. Kind of weird. Peeing while (essentially)laying down just isn't natural for me. The only issue was finding a brand that stayed on when sweating. Those that did needed adhesive remover to get them off but better too sticky than not enough. Going for an easy bike ride today. Looking forward to see how that goes.
Archives1
Staff member
Speaking of clamps. In the early stages I used the Wiesner Clamp just briefly eg when getting out of the shower and getting dried. But it was quite uncomfortable and a bit like the clip you might put on your cereal packet once you've opened it
. However, I have come across the Pacey Cuff which is a bit more expensive but looks a lot more comfortable. I was thinking of trying it out as another tool in my armoury. Does anyone have any experience with the Pacey Cuff?
. However, I have come across the Pacey Cuff which is a bit more expensive but looks a lot more comfortable. I was thinking of trying it out as another tool in my armoury. Does anyone have any experience with the Pacey Cuff?
Archives1
Staff member
I've got the Pacey Cuff. It's quite comfortable but unless it's pulled quite tight it doesn't prevent all the drips. I did tighten it more and found it caused a bit of penis swelling. I certainly don't think I would want to use for a very long period. I tend to have fairly minimal leakage in the early part of the day and my plan was to try a clamp with a very light pad if I happened to be doing something more strenuous in the evening. I think it takes a little while to get used to the proper adjustment. I might try the Uriclack too. I have seen some quite positive reviews for it.
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