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Leakage issues

User
Posted 24 Sep 2023 at 12:27

Hi I had a prostatectomy 3 weeks again, I've recover well post op and the port sites have healed up well. My problem is leakage. Since the removal of the Catheter I've had very little bladder control. Can any one give any idea how long this issue goes on for, the only thing the hospital have said to me is 'it happens' not very helpful when you're going through 4 pads aday and pretty much house bound.

User
Posted 25 Sep 2023 at 05:47

I was in a similar position. After the catheter was removed I could not as they say hold water and was using perhaps 9/10 pads a day so 4 pads is good!  Over the period of weeks I improved in steps - 6/7 pads a day to 3/4 pads and so on. I’m now 5 months post op and on 1 pad every 24 hours occasionally 2 if I want to freshen up to go out at night. I still need a pad and find I leak more in the late afternoon / evening when tired. All I can say is keep squeezing and if you have not already down load the Squeezy app. I’ve avoided tea/ coffee / alcohol and that helps. When I have had tea it goes straight through me. Good luck

User
Posted 25 Oct 2023 at 11:49

7 weeks in now, dry at night and one pad per day. I saw the surgeon this morning, he confirmed the cancer was contained in prostate, however he couldn't save the nerves. 

Dave

User
Posted 03 Jan 2024 at 11:21
I had my prostate out in late March 2018. When my catheter was removed a week later I had no bladder control. I was not given any warning of what to expect or how to prepare. I had brought pads with me (the hospital did not offer any). I leaked very badly going home, fortunately the bus seats were not porous. I should have been wearing incontinence pants. When I bought some pants the largest available did not fit (I am 38" waist) they felt like they were constantly falling down and there was no obvious difference between front and back.

After 2 weeks I was getting nowhere and I needed to be back at work by the end of April. I persuaded my GP to prescribe a sheath catheter and leg bag which I used until July 2018. (They had to be obtained via an on-line pharmacy. Fortunately I was not on any other medication.)

While using the sheath and leg pag (and a pad in case of leakage) I did pelvic floor exercises, squeezing a rubber ring between my thighs. I was soon able to use the pad at night. after 3 months I was able to dispense with the sheath and leg bag.

I think it was October 2023 when found I only had a slight persistent drip and I could get by with a face cloth inside my pants.

I can still leak badly if I sweat intensely, and I urinate very frequently, but I am mostly back to normal.

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User
Posted 24 Sep 2023 at 13:34

I don't think anyone can give you a definite answer. I was going through many more pads a day than you are, if I remember rightly. It is like asking how long is a piece of string? The most important thing is to do your pelvic floor exercises religiously. I have copied below my suggestion to another member with the same issue. Just be patient, 4 pads a day is not bad at all at this stage - just go for a coffee where they have a descent toilet. Carry a bag with spare pads. Most toilets have disposal bins for nappies etc. 

Following my prostatectomy 12 years ago my catheter had to remain in place for over 5 weeks. When it was removed it felt as though a tap was fully turned on!  I had no help from anyone. Things were so bad that I used to just sit on the toilet for long periods to get some relief. Then a couple of days after the removal of the catheter, while sitting on the toilet, I instinctively tried to stop the flow. Guess what I could feel the rate of drips slowed a little. That was a Eureka moment for me and from that point onwards I would sit on the toilet, squeeze to try and stop the flow for the count of ten, then let go to the count of ten, repeating the process ten times, three times, a day. After a week or so I felt I was making real progress and continued for about a month and gradually reduced the number of pads - eventually to a single pad per day and that is where I am even now. I always put a small pad in my underpants for safety.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 24 Sep 2023 at 13:41
Second vote for the try and stop the stream several times while peeing - assuming you have enough control to fill your bladder in the first place.

You should also avoid caffeine and alcohol as these will increase frequency and degrade control so will hamper your recovery.

User
Posted 24 Sep 2023 at 17:59

I see your point but you still have to do the pelvic floor exercises because you may not notice any change initially but from my personal experience for a couple weeks I did not notice any improvement. I persisted, there is no other way unless you accept that you will be incontinent for the rest of you life. Also remember that the sphincter you are left with is the voluntary one (the involuntary one next the bladder is removed with the prostate) which you were naturally controlling to pass the urine before surgery. It is a matter of retraining it. Vast majority of men either regained control immediately after the removal of the catheter and the rest achieve 100% continence after a few weeks. Some like me only achieve 99.9% continence. Of course there are always going to be a few who are not successful in regaining control. 

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 25 Sep 2023 at 05:47

I was in a similar position. After the catheter was removed I could not as they say hold water and was using perhaps 9/10 pads a day so 4 pads is good!  Over the period of weeks I improved in steps - 6/7 pads a day to 3/4 pads and so on. I’m now 5 months post op and on 1 pad every 24 hours occasionally 2 if I want to freshen up to go out at night. I still need a pad and find I leak more in the late afternoon / evening when tired. All I can say is keep squeezing and if you have not already down load the Squeezy app. I’ve avoided tea/ coffee / alcohol and that helps. When I have had tea it goes straight through me. Good luck

User
Posted 27 Sep 2023 at 07:29

I am at a similar timescale stage and situation.  A week without catheter and pee when I stand up and walk but not when sitting down.  As people have said it’s a case of doing exercises.  It feels great to stop the pee mid flow !!  But I don’t see a return to a ‘few pints’ with mates just yet !!

User
Posted 27 Sep 2023 at 14:15

As others have said, at your timescale, 4 pads daily is pretty good. I think I was on 5 a day at the same stage (I had surgery on 4th July) and having to regularly change when out and about etc. Now, at 12 weeks I am at 1 or 2 depending on activity levels etc. Generally finding less and less in the pads, sometimes the second one is only because I fancy a freshen up.

Key advice as always, keep doing the pelvic floor exercises as they really do help.

Good luck - sounds as if you're on track

John

User
Posted 01 Oct 2023 at 10:04

Hello I have a few friends older than me who also have struggled with leaking, I think the older you are the harder it is I am 53 and got things under control reasonably quickly but only after I asked my physio about other exercises in conjunction with pelvic floor ones. So I started core exercises every day for 20mins and the results were great I was dry in 4 weeks. My 2 friends who I keep in touch with me were I hospital same time as me they are retired in there 60s and are still leaking a year down the line. How old are you I didn't see your age ? One of my mates is going have I think injections to help his incontinence. I stopped doing the exercises and when I saw my doctor he said I have to keep them up forever as long as I can do them of course, as you get older I will probably start leaking so it's important to keep doing them. I do get the pad situation as the ones on NHS are horrible and bulky I used the Tena men ones alot better but not cheap especially when you use 4 or 5 a day. Stay hopeful and keep your chin up. Greg

User
Posted 01 Oct 2023 at 16:23

Originally Posted by: Online Community Member

I think the older you are the harder it is

Age is undoubtedly a factor but most important is pelvic floor strength (which generally can be built up through exercising as you've said). I have an older friend who had fewer initial leakage issues than I did.

Above all, try not to be too despondent about the leakage - it can be hard not to be sometimes, but work at it and it will get better.

User
Posted 25 Oct 2023 at 11:47

Thank you. I'm 75.

7 weeks in now, dry at night and one pad per day. I saw the surgeon this morning, he confirmed the cancer was contained in prostate, however he couldn't save the nerves. 

 

User
Posted 25 Oct 2023 at 11:49

7 weeks in now, dry at night and one pad per day. I saw the surgeon this morning, he confirmed the cancer was contained in prostate, however he couldn't save the nerves. 

Dave

User
Posted 25 Oct 2023 at 16:33

Originally Posted by: Online Community Member

7 weeks in now, dry at night and one pad per day. Dave 

Well done Dave. That's brilliant news and fantastic progress..

Edited by member 25 Oct 2023 at 17:29  | Reason: Not specified

User
Posted 03 Jan 2024 at 11:21
I had my prostate out in late March 2018. When my catheter was removed a week later I had no bladder control. I was not given any warning of what to expect or how to prepare. I had brought pads with me (the hospital did not offer any). I leaked very badly going home, fortunately the bus seats were not porous. I should have been wearing incontinence pants. When I bought some pants the largest available did not fit (I am 38" waist) they felt like they were constantly falling down and there was no obvious difference between front and back.

After 2 weeks I was getting nowhere and I needed to be back at work by the end of April. I persuaded my GP to prescribe a sheath catheter and leg bag which I used until July 2018. (They had to be obtained via an on-line pharmacy. Fortunately I was not on any other medication.)

While using the sheath and leg pag (and a pad in case of leakage) I did pelvic floor exercises, squeezing a rubber ring between my thighs. I was soon able to use the pad at night. after 3 months I was able to dispense with the sheath and leg bag.

I think it was October 2023 when found I only had a slight persistent drip and I could get by with a face cloth inside my pants.

I can still leak badly if I sweat intensely, and I urinate very frequently, but I am mostly back to normal.

 
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