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Advice on incontinence

User
Posted 28 March 2016 22:59:02(UTC)
Hello everyone this is my first post.

I had my prostate removed 4 weeks ago by robot surgery and I'm leaking like a sieve. It is starting to get me down because I can't do anything for any period of time.

If I lie or sit down then generally I do not leak, then if I get up for a pee I dribble all the way to the loo. If I potter about the house standing up then within 5 mins I will get the urge to pee and when I do go it's just a dribble. This then continues until I rest/ lie down for an hour or so whereby I can then go for a normal pee all be it dribbling as I go.

I am doing my pelvic floor exercises but to be honest I am not noticing any improvement.

Does any one have any advice as I'm getting really frustrated because I want to get out and about but I feel tied to the toilet because of this Incontinence.

Many thanks in advance
User
Posted 29 March 2016 17:07:15(UTC)

Hello Ted and welcome

Not to dismiss your worries lightly but only 4 weeks after a robotic prostatectomy is no time at all. It is very rare for a men to regain control immediately so really it's a question of patience.

Are you wearing pads? I assume so but as you are worrying about "dribbling" all the way to the loo or when pottering then maybe you are trying to get through without them.

I'm sure that somebody will be along to offer their advice to but frm what I've gathered from other men on here, you can't expect too much too soon, although I'm sure to you 4 weeks seems like forever

Best wishes
Sandra

We can't control the winds - but we can adjust our sails
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User
Posted 29 March 2016 19:33:59(UTC)
Hi Ted
I was in the same situation as you and thought things would never improve. I found that I dreaded standing up but then tried doing it in stages by easing myself up and then standing still for a minute or so while concentrating on trying to squeeze the muscle to stop myself urinating. This took time but after a few weeks it started to improve. Did the same when getting out of the car or anytime when moving position. Getting down to feed the cat amd getting up again - same technique. Concentrated on feeling good about any slight improvement rather than the bad bits.
I changed the pads regularly to make me feel good rather than because they were close to their limit. Bit by bit things improved around the house and close to home but walking longer distances was the last thing to conquer.
Purely a personal thing but I found that wearing the pads too tightly made me feel as though I almost continually wanted to wet myself so I continually experimented with this.
It has taken 7 months for me to get back to normal but things were vastly improved after 5 months. Stick with it but don't overdo things and congratulate youself over every little victory. Don't be surprised if you sometimes take two steps forward and then one back.
I hope this helps a bit but I can' t sugar coat it as it hasn't been a bed of roses but given time things should improve.
Kind regards,
Kevan

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User
Posted 02 April 2016 20:12:44(UTC)

Hi Ted,

How are you doing with the control issues today?

As stated above 4 weeks post op is far to soon to be worrying about not being dry.

It's difficult to put your situation into perspective without referring to my experiences, so I apologise in advance if this becomes a post where I witter on about "me and what I did", BUT BUT BUT it may help you come to terms with your leakage and MAY help you adapt your approach to your unique position? It may not, but it's worth a go.  So I will witter on, a bit, sorry!

The thing with PCa and RRP, even open surgery is that no 2 men necessarily react the same way. All men have the same basic bits in the same basic position. But when they get interfered with, no one knows for sure what will happen. So you need to bear this in mind, maybe.

So, post op recuperation.

Maybe throw the book out of the window. Play around. Try stuff. Find out and then do what works for you.

Yawn warning - when I was recovering from my Da Vinci I leaked like a sieve. read my blog, I was uncontrollably pissing myself even with a catheter in. How does that work? It shouldn't, no matter.

So, I wore a Conveen sheath and a leg bag whenever I felt tired. Pelvic Floor exercises did not work for me, do not work for everyone, may give some men the feeling that they are doing something and are exercising some degree of control. OR, may just knacker you? That is how it was for me. So I stopped doing them. And I am dry, 99.9% of the time, so they're not necessarily necessary for all men.

Wearing a Conveen with a leg bag you can relax, pee at will, when walking or shopping while watching TV, whenever. If you are out and about you only need to find gravel to empty the bag it if starts it get a bit full.

If you start to feel a bit more in control, you can go cal to pads. Talking of pads I was going through 4 - 6 a day when I staretd, and that is from about 8am to 1800, when I would "bag up", and give up on the day of straining to hold control.

For me, yawn yawn, there was a desire to balance between making slow but steady progress, and flogging the dead continence horse with no good result.

The main message is to look at any and all options for you, and then do what ever you need to to make progress but at the same time give yourself some breathing time and rest time. Think creatively about how you can make your own progress.

good luck

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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User
Posted 29 March 2016 17:07:15(UTC)

Hello Ted and welcome

Not to dismiss your worries lightly but only 4 weeks after a robotic prostatectomy is no time at all. It is very rare for a men to regain control immediately so really it's a question of patience.

Are you wearing pads? I assume so but as you are worrying about "dribbling" all the way to the loo or when pottering then maybe you are trying to get through without them.

I'm sure that somebody will be along to offer their advice to but frm what I've gathered from other men on here, you can't expect too much too soon, although I'm sure to you 4 weeks seems like forever

Best wishes
Sandra

We can't control the winds - but we can adjust our sails
Thanked 2 times
User
Posted 29 March 2016 17:44:11(UTC)

Hi Ted
Good post from Sandra. This can all come good yet. I was lucky in that I was almost immediately dry but was only truly fully continent at 12 weeks. A really good friend on here who had the op at the same time was really upset it was taking time , but he too was fully continent at 6 months. I really don't want to start off the whole PFE debate but I did them and still do whilst I read the paper. Keep positive
Chris




If life gives you lemons , then make lemonade
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User
Posted 29 March 2016 18:13:25(UTC)
Thank you Chris and Sandra for the reassurance. I think I was undersold the truth about the incontinence. I just did not expect it to be as bad. I am going through between 3 and 6 pads a day and a underpants type one at night, although to be fair I am mostly dry at night and only seem to wet the underpants en route to the loo. The main problem is when I stand up and am active, after 5 mins or so I get the urge to pee and then that's it for the day never ending trips to the loo.
User
Posted 29 March 2016 19:33:59(UTC)
Hi Ted
I was in the same situation as you and thought things would never improve. I found that I dreaded standing up but then tried doing it in stages by easing myself up and then standing still for a minute or so while concentrating on trying to squeeze the muscle to stop myself urinating. This took time but after a few weeks it started to improve. Did the same when getting out of the car or anytime when moving position. Getting down to feed the cat amd getting up again - same technique. Concentrated on feeling good about any slight improvement rather than the bad bits.
I changed the pads regularly to make me feel good rather than because they were close to their limit. Bit by bit things improved around the house and close to home but walking longer distances was the last thing to conquer.
Purely a personal thing but I found that wearing the pads too tightly made me feel as though I almost continually wanted to wet myself so I continually experimented with this.
It has taken 7 months for me to get back to normal but things were vastly improved after 5 months. Stick with it but don't overdo things and congratulate youself over every little victory. Don't be surprised if you sometimes take two steps forward and then one back.
I hope this helps a bit but I can' t sugar coat it as it hasn't been a bed of roses but given time things should improve.
Kind regards,
Kevan

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User
Posted 29 March 2016 19:44:47(UTC)
Ted.

As the others have said 4 weeks is not long, I was lucky post RARP 4 days and almost dry a few weeks and totally dry. Lots of PFEs, do not "go" just in case try to stretch out the time between visits. Stand in the shower ( without the water on) with a pad and under pants on then let your bladder go, this will give you the experiance of how well a pad works and may give you the confidence too hold on a bit longer.

If you scroll to the top of the page, click show search and put/ type incontinence into the box it will take you to other conversations where you can see othet people's stories. Not all the solutions will be open to you.

There could still be debris in the plumbing that is affecting things.

I lost my continence a second time following some problems sorting a stricture. 4 months on I am down to a few mls a day.


Thanks Chris
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User
Posted 29 March 2016 19:57:03(UTC)
Hi Kevan and Chris thank you for the reassurance and advice. I will try the test to see how much the pads hold. I think you're right it will give me more confidence in them. I need to make a conscious effort to do things more slowly as I have noticed this does help.

Anyway I have given myself a good talking to and drunk a cup of man up and I'm feeling a lot better thanks everyone your advice and support has been invaluable
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User
Posted 29 March 2016 20:41:35(UTC)

Originally Posted by: Online Community Member
Hi Kevan and Chris thank you for the reassurance and advice. I will try the test to see how much the pads hold. I think you're right it will give me more confidence in them. I need to make a conscious effort to do things more slowly as I have noticed this does help.

Anyway I have given myself a good talking to and drunk a cup of man up and I'm feeling a lot better thanks everyone your advice and support has been invaluable

----------------------------------------------------------------------------------------------------------------------------

Good for you Ted but no need to "man" up.

Your body (and mind) have gone through some significant changes and it's telling you it's pretty fed up about it so humour it for a bit and stop thinking you are an oddity.

You're not, you're just not Superman (sorry to break that news to you !!)

We can't control the winds - but we can adjust our sails
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User
Posted 29 March 2016 20:43:23(UTC)

Hi Ted

Check my profile. I had almost exactly the same symptoms at first (but don't assume your ongoing condition will be as bad a mine). I found the answer for the early stages was a Conveen sheath and leg bag combination; discrete to wear, available on prescription and above all, giving relatively stress free mobility. My early experience with pads and disposable briefs was awful to put it mildly.

Recovering continence after prostatectomy (of any type) does seem to be a bit of a lottery, and a lack of continence does weigh heavily on the mind. For me, the Conveen solution gave me breathing space where at least it was practical for me to get back to work. About three months on, I did recover a bit of control so I could switch back to pads.

IF (and only IF) you don't recover control, there are still solutions available. It is not the end of the world!

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.
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User
Posted 29 March 2016 21:37:13(UTC)

Originally Posted by: Online Community Member
I think I was undersold the truth about the incontinence. I just did not expect it to be as bad.

 

This was an interesting comment Ted - if you might have been undersold the side effects, did they expalin to you why men are incontinent after the op? If not, this might help:

When the prostate is removed, the urethra is cut, the section with the prostate is removed and then the two cut ends are joined back together. For a while after the op, these ends are leaky - our surgeon likened it to trying to hold water in a sieve. 

At the same time, the main valve that controls urine flow out of the bladder is removed and re-sited (or sometimes removed completely) and the brain has to re-learn how to control that valve (in reality, the valve is part of a complex muscle movement) so you go through something akin to when you were a toddler being potty trained. The brain has to work out how it feels and how to hold it closed. 

Alongside all that, the muscles that help to control urine flow (the pelvic floor) have been cut and bashed and bruised so are sometimes a bit slow to step up their game. 

 

Some men have no leaky sieve, their pelvic floor hasn't been cut or damaged and the valve didn't need to be moved - these will regain continence immediately. For EVERYONE else, there is at least one of the three issues above to contend with and it takes time for everyting to fall back into place. Normal progress would be to become dry at night first, and then increasingly be able to hold it in for a while during the day - this can be quite exhausting as your brain has to concentrate all the time. If you have ever had children, you probably remember that once they were potty trained, they still had accidents if they were playing or absorbed in something. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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User
Posted 30 March 2016 11:41:34(UTC)
Hi Lyn it makes sense now that I know what they have done during the operation. None of this was explained I was referred to a website during my consultation. When I asked about incontinence I was told not to worry about it as they don't go near the muscle or nerves. Anyway that's in the past and its now time to move on I now know what to expect and I have picked up some useful advice from you all. Thank you everyone
User
Posted 30 March 2016 11:43:45(UTC)
Hi Tony thank you for the recommendation I will look into the Conveen sheath if it is no better before I return to work
User
Posted 02 April 2016 20:12:44(UTC)

Hi Ted,

How are you doing with the control issues today?

As stated above 4 weeks post op is far to soon to be worrying about not being dry.

It's difficult to put your situation into perspective without referring to my experiences, so I apologise in advance if this becomes a post where I witter on about "me and what I did", BUT BUT BUT it may help you come to terms with your leakage and MAY help you adapt your approach to your unique position? It may not, but it's worth a go.  So I will witter on, a bit, sorry!

The thing with PCa and RRP, even open surgery is that no 2 men necessarily react the same way. All men have the same basic bits in the same basic position. But when they get interfered with, no one knows for sure what will happen. So you need to bear this in mind, maybe.

So, post op recuperation.

Maybe throw the book out of the window. Play around. Try stuff. Find out and then do what works for you.

Yawn warning - when I was recovering from my Da Vinci I leaked like a sieve. read my blog, I was uncontrollably pissing myself even with a catheter in. How does that work? It shouldn't, no matter.

So, I wore a Conveen sheath and a leg bag whenever I felt tired. Pelvic Floor exercises did not work for me, do not work for everyone, may give some men the feeling that they are doing something and are exercising some degree of control. OR, may just knacker you? That is how it was for me. So I stopped doing them. And I am dry, 99.9% of the time, so they're not necessarily necessary for all men.

Wearing a Conveen with a leg bag you can relax, pee at will, when walking or shopping while watching TV, whenever. If you are out and about you only need to find gravel to empty the bag it if starts it get a bit full.

If you start to feel a bit more in control, you can go cal to pads. Talking of pads I was going through 4 - 6 a day when I staretd, and that is from about 8am to 1800, when I would "bag up", and give up on the day of straining to hold control.

For me, yawn yawn, there was a desire to balance between making slow but steady progress, and flogging the dead continence horse with no good result.

The main message is to look at any and all options for you, and then do what ever you need to to make progress but at the same time give yourself some breathing time and rest time. Think creatively about how you can make your own progress.

good luck

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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User
Posted 02 April 2016 20:58:10(UTC)

Hi Ted,

Yes i know what you mean about the incontinence " doing your head in " i,m almost 8 months post Da Vinci prostatectomy and i,m still

bloody leaking like a sieve, although please dont take this as the norm because i,ve come to understand that PCA is a very "person specific" thing, no 2 people heal or deal with it the same.. i,m similar to you, its when i get up that i leak, dont have a problem at night in bed, or even when i,m sitting down for any length of time.

I,ve been doing PFE,S  since two weeks before the op and then from 2 weeks after the op, ive got a pelvic floor like a steel trap :) but still leak. i think the jury,s out on these exercises ( as Lynn a very knowledgable lady on the subject) will tell you but i cant see what harm they

do and if nothing else at least now i can take the top off a bottle of Budweiser without an opener :)

Otherwise i,m 58 fit and healthy, go to the gym 3 times a week , mountain biking etc so who know,s ???

Keep the faith Ted as the Northern soulies say and ( i,m sure youre sick of hearing this) but try stay positive as i believe that has a massive

effect on health and healing in general...

This is a great site as there are some very knowledgable and supportive people on here so keep checking in..

Good luck Keith...

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User
Posted 02 April 2016 22:21:42(UTC)
Hi Keef and Countryboy
Many thanks for taking the time to reply and lend your support and advice I really appreciate it. Well I have had mixed results and minimal improvement, but still improvement all the same. On Wednesday I got that fed up with it I went for a short cycle ride which I thoroughly enjoyed, I blew some cobwebs out and for the duration I didn't want to pee. When I got home I steadily dismounted and walked deliberately and slowly to run the bath. It was at this point that I realised my lower half felt normal, and I had a degree of control this lasted for the rest of the day. The remainder of the week was back to post op normal so I tried cycling again to see if I could replicate Wednesday's success alas I didn't, I got relief whilst on the bike but that was it. Today however I have had what I think is a eureka moment it's the slow and deliberate walking that gave me success on Wednesday. Today I went on a fairly long journey sharing the driving with my wife. We stopped every couple of service stations for the loo and when I got out of the car I did so with pauses to allow me to regain control. I walked slowly and deliberately to and from the car and not a drop was spilt until I forgot myself and started to walk at my normal pace and then I was back to square one. But I have had success I have recognised what gave me success and I will try to repeat it tomorrow. I will update you tomorrow evening when I get home.
Many many thanks everyone it means a lot to me
User
Posted 02 April 2016 23:59:43(UTC)

Oh my! Ted, you should not be cycling this soon - it's a crazy thing to do. At least check with the surgeon first - pointless going for nerve sparing surgery and then risking permanent ED, hernia and who knows what else. It was major surgery, even if you only have tiny puncture wounds :-(
And did you check with your car insurance that you are covered this soon after the op? My husband's insurer wouldn't cover him until we had a doctor's letter which was 11 weeks after surgery. Mind you, he had open RP so emergency stops would have been a bit more of a challenge

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 03 April 2016 00:02:56(UTC)
Originally Posted by: Online Community Member


if nothing else at least now i can take the top off a bottle of Budweiser without an opener :)




So can I, Keef 😏

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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User
Posted 03 April 2016 07:45:11(UTC)

Ted,

Forgot to suggest that if not already doing so, you start wearing briefs. Tight underwear provides a little support that may also help you.

With regard to rising from a seated position such as having been riving, any movement where your stomach muscles will be used, it may help you if you consciously tense the bladder as much as you can before you start to move, and after a while this will happen naturally without you thinking about it. This will also apply to everyday life such as when you bend down to lift something off the floor, bend down and exert when shovelling or digging, or drilling a hole in a wall stretching up when painting, you get the idea? I don't know if I am not tensing consciously or subconsciously any more.

Get your head around the fact that you are making progress, maybe slower than some and slower than you would like, but the fact that you are progressing is a good sign.

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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User
Posted 03 April 2016 09:49:46(UTC)
Ted
May I just say that from my experience Dave's advice is spot on and he has described it all so well. Yesterday was my first day free of any incontinence aids. It has taken 7mths but it has been a step at a time and have not rushed things. Listen to what Dave has said and then adapt to suit you but it sounds as though you are doing just that.
Stay positive, congratulate yourself on the victories and laugh at the occasional mishaps.
All the best,
Kevan
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User
Posted 03 April 2016 10:08:26(UTC)
Originally Posted by: Online Community Member
Hi Tony thank you for the recommendation I will look into the Conveen sheath if it is no better before I return to work


T

The sheath system is good but your consultant may not approve of their use so soon after your op. My consultant is one of the school that thinks is makes you lazy and means you rely on the sheath. My second bout of incontinence was 19 months after RARP and at my insistence they did supply me with a sheath system, when my consultant found out he tried to give the nurse a ticking off but as we both told him, I was not post RARP I was post urethra repair and 90 days of catheterisation.

Pre and post RARP I did lots of PFEs and was almost dry 4 days post catheter removal.

Following the second bout of incontinence I did the PFEs for about 9 weeks with no effect. After reading CBs account I stopped mid Jan 2016 and I am now down to about 3 ml on a bad day and dry on a good day. I think my bladder test dislodged something as my continence improved in the days following the procedure.

Not suggesting you stop PFEs,as some people say they are a no cost option and different things work for different people. I wear fairly tight breifs and found it is a help.

Some advice I was given that is easy to say but harder to do, "stop thinking about the incontinence and put it to the back of your mind".

As we keep saying it is early days.

Thanks Chris
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User
Posted 03 April 2016 14:14:58(UTC)
Hi people Just been diagnosed and slightly worried about the incontinence thing but enjoyed reading this conversation. At what time did anybody get back to work ?
User
Posted 03 April 2016 14:53:33(UTC)
Cornish

I had the Da Vinci robotic surgery and was back at work after 4 weeks,some might say that was too early, the NHS info for RARP says back at work in 2 to 6 weeks, but it's not a race, we all recover at different rates. My job involved part office based and part driving to site meetings throughout the UK, not a physically demanding job.

I feel I complied with the law regarding driving after 4 weeks but in hindsight as I learnt from this site, I perhaps should have also have consulted my companies insurance company.

Lots of things will or may affect your recovery.

Thanks Chris
User
Posted 03 April 2016 17:12:13(UTC)

Thanks Chris, I have quite a physical job but still waiting for what the consultants advise for treatment. RPhas been mentioned. Cheers mate

User
Posted 03 April 2016 17:13:58(UTC)

Cornish

I was off for over 4 months following surgery, in fact I had to "bully" work to let me go back...and they're making me do a 6 week phased return....and to be honest I appreciate it as my head is mince trying to get back up to speed...they're being very cautious....and supportive

I was driving after 6 weeks and when I rang the insurance company they were happy for me to drive after 6 weeks with no additional evidence...since then I've passed my IAM assessment too before I went back to work (kept me from being too bored)

The moral here, is that we're all different and recover at different rates...listen to your body, your support team (medical and, hopefully at work) and your partner....they all have a vested interest in you going back when you're ready too....besides, the better weather will be here soon....

Duncan

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User
Posted 19 March 2017 12:17:15(UTC)

Everybody is different, I am now dry after 6 months post OP, but it was hard at the start, you must be patient and take one step at a time, I was told not to drive for 3 months, it is a major OP and you must give things time to heal, I think another thing is sometimes the catheter is taken out too soon mine was in for 3 weeks a bit of a pain but gives things more time to heal, any questions please ask,
best wishes
Paul

User
Posted 19 March 2017 13:00:18(UTC)

There does seem to be a wide range of recoveries. I was back at work 2 weeks post-op, and driving. Self-employed life... I was 'dry' (barring the occasional dribble) almost immediately, though I have been advised to review that situation due to starting HT and soon to have RT. I guess it will be what it will be. Pelvic floor exercises aplenty, and trying get fit again (now 2 months post op). To be honest, the physical recovery from the surgery is what has been frustrating me the most, but then apparently I am the most impatient person on the UK!

cheers
G

User
Posted 11 July 2017 20:20:15(UTC)

Tony, are you aware if using the Conveen prolongs the normal incontinence time to heal at all?

User
Posted 12 July 2017 19:22:37(UTC)

There is a view that using the sheath and bag makes the wearer lazy and so prolongs recovery. There may be some truth in this for some people (particularly for a friend of mine who just said "sod it, I'm going to get on with my life." and as far as I know he is still using the sheath and bag) but I suspect there is an element of folklore about the subject, as with pelvic floor exercises and diets.

For me, going around with a soggy pad or pair of disposable briefs just made me feel thoroughly depressed as I was trying my hardest with PFEs, TENS machines and so on with absolutely no effect. Once I was using the sheath and bag, the pressure on me eased, I was able to get back to work and once my sphincter had started some limited activity (about three or four months from operation I think), I was concious of it and given a close enough toilet, I could avoid filling the bag. I did not use it as an easy way out. The sphincter just suddenly started working again (a bit) by itself.

I guess that is a long-winded way of saying that from my point of view, no, the sheath and bag didn't prolong my recovery. It's just unfortunate that, having a slight reactivation of my sphincter, there is stopped and absolutely nothing helped any further. Hence the sling and eventual AUS operations.

I have a view, probably to be disputed here, that recovery from incontenence after prostatectomy (done by whatever method) is a lottery, depending on the complexity of the urethra join, the skill of the surgeon, the internal geography of the patient, maybe even pelvic floor strength, quantities of beer and coffee drunk and many, many other factors so generalisation is not really helpful. It seems necessary to judge each case individually to see what is best.

Sorry, rant over....

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.
User
Posted 12 July 2017 20:08:16(UTC)
James

I have had to regain my incontinence numerous times due to repeated bladder neck / stricture procedures and associated issues. The sheath system gave me the confidence to hang on a bit longer and in my case aided and speeded up my recovery.


Thanks Chris
User
Posted 16 July 2017 13:30:44(UTC)

Hi

I am now 170 days post RARP.  Somewhat obsessed by the issue/process of my continence, I have made a daily detailed record of what I eat and drink, when I eat and drink, the time of the last drink before bed and the number and time of each night-time pees including buying a scales to weigh the pads.  All done for myself in an effort to try and understand and learn to try and manage and improve.  I have come to some unremarkable conclusions.  (Note: My personal situation was/is that I had pretty good control during the day from the start and I had total day-time control after about 3 months.  I had little night-time control at the start and that has improved so that today (with one mid-night pee) I have the occasional 10ml-100ml night time disaster (once or twice a week). 

I have learned/concluded that:

1.  We are either all constructed in a slightly different way and when the operation was done the surgeon cut through vital nerves, he cut through more in some and less in others.

2.  The pelvic floor exercises (PFE's) are a waste of time.  Doing them makes no measurable difference. And obsessive as I am, I have never been sure exactly what/where they are so I obsessively exercised everything in my pelvis for months.

3.  The problem is a problem of conscious and unconscious control. There is a sphincter muscle there that can stop the flow but it is weak but not just weak it has a preferred at rest preferred of 'open' (as opposed to the sphincter that was removed/disabled which had a preferred at rest position of 'closed' i.e. pre-op I had to make an effort to open it now I simply have to stop keeping it closed. Keeping it closed is easy to do whilst I am awake but difficult to do when I am asleep (the deeper the sleep the more difficult it is).

4. The 'alarm' process is now different. Previously my bladder would fill and when it got to a certain level of fullness I would feel that fullness and either act on that by going or ignoring it. Now the volume of urine never gets to that level in my bladder to feel 'full', long before then (at a volume previously of 150ml and now at 250ml/300ml) I feel pressure in my penis and I fight to hold back the flow. Over the months it has got better/easier but very little, very slowly.

4. The production of urine into my bladder is not a constant drip it comes in volume suddenly. So, for example, I can have a pee before going to bed and be full an hour later or 4 hours later. Why? it seems to be the time since my last drink. If I have a drink just before going to bed sometimes my bladder will be full within an hour and that its often the deepest hour of my sleep and that's when the disasters occur.

So what? I want to get to a position whereby the muscle will hold back the flow and wake me before releasing and that does happen most nights but sometimes the full feeling is not sufficient to wake me and the muscle is not strong enough to hold it back until I wake!

I have had no briefing/guidance/instruction/training from the NHS it's all been down to me trying to work it out.

User
Posted 17 July 2017 12:16:24(UTC)

That comment moved me to register with this forum (I have occasionally lurked for about a year now) since it resonates somewhat with my own experience. It is now 15 months since my operation and I still leak variably, though I gather the majority are fully continent in about half a year.

In my case nights were resolved quickly, being totally dry after a couple of weeks and not needing pads (there have been just a couple of "accidents"). Daytime was different however and the decline in number of pads per day needed has been slow. It felt like a major breakthrough when I could first get by with just 2 pads and could confidently go out with just one spare in my back pocket. I am now mostly OK with one. I now don't usually experience "stress incontinence" when leakage is associated with actions that raise abdominal pressure such as lifting.

What I experience is rather similar to Nomad's point 4. When I start the day my bladder seems to work well, and able to retain a reasonable volume though not as much as when I went out for beers as a student. As the day wears on though the sphincter gets tired, and I can't hold as much just as described: there isn't enough for me to get a feeling of a full bladder so I am alerted by the sensation of a dribble. Some days the sphincter seems to hold on better than others, sometimes but not always in a way I can anticipate. Doing some gardening last Saturday for example, predictably resulted in significant later leakage,and I rationalise that by assuming the sphincter successfully resisted the pressure on it at the time but then got more tired for later in the day.

Thanks Nomad for describing this, which reassures me I am not alone in the experience. It doesn't seem to be a pattern of incontinence described in the leaflets about prostatectomy.

Speaking anatomically (something I am actually qualified to do) it does probably relate to the 2 sphincters in Nomad's second point. The pelvic floor sphincter that one can consciously contract is restricted to short periods of action, so it is good at adding extra tightness when there is a risk of stress incontinence but useless for closing the urethra for long periods. While you can identify the sphincter by stopping urination mid-stream no one can maintain that for more than seconds. Personally I still persist with the pelvic floor exercises, partly as an act of faith and also with the theoretical possibility that the body mechanisms for building up muscle that is used a lot would also help stimulate the nearby "unconscious" sphincter (the word used technically is involuntary).

In normal men (i.e. those still with a prostate) that sphincter is separate from the pelvic floor since the prostate lies between. It is not something the surgeon can identify in the operating theatre, and it varies in how much it lies in the bottom bit of the bladder and how much in the beginning of the urethra where it is surrounded by the top of the prostate. Thus the damage during surgery is very variable between patients. In Nomad's and my case I presume most of the sphincter was unfortunately removed, and we have a long wait for the little bit remaining to build up its bulk and strength.

In terms of factors to help, the hospital leaflet (and the excellent Prostate Cancer UK literature) warned of the effects of caffeine and alcohol. At some point I got fed up of always having to make special requests in social situations so I did an experiment. In my case I found normal tea causes no problem, making it easy to find something to order in a coffee shop. However if I want to drink coffee, if it isn't decaffeinated I suffer the consequences for about 24 hours. And if you ask for decaffeinated coffee in a restaurant there is no guarantee that is what they will serve, I quickly discovered it is safer to ask for tea! Alcohol deesn't cause me problems, at least for moderate amounts of beer or wine, though I have noticed an effect from larger quantities sometimes consumed at parties without keeping count.

Nomad's experience of changes in urine production probably depends when he eats. While you are digesting food the body keeps an awful lot of liquid in the intestines to help with the process, so that may only start moving to the bloodstream and on to the kidney and bladder two or three hours after the last meal. I don't know whether it might be possible to help things by varying mealtimes.

User
Posted 17 July 2017 21:02:59(UTC)
A very interesting post, I'm so sorry that you are still having problems but my husband has a Supra pubic catheter as he is unable to pass water the usual way, though it does frequently drip and sometimes more (an accident) through the urethra. He has a Leg bag permanently and of course a night bag. Sometimes that night bag will fill to the brim over night (2litres) and others be half full. I've seen him empty his bag and it fill within 30 mins again, it seems random but I suspect that it's not as random as it appears. It's interesting to note the situation with the sphincters, this isn't something we knew about, though he hasn't had his prostate removed it has been blasted by radiation in a futile attempt to reduce its size and its intrusion into his bladder (caused far more problems than it solved). After much angst and a few operations to resite the ureters (badly damaged due to retention) he had to accept that things were not going to improve and he would have to put up with the supra pubic. It's not nice but I guess better than the alternative. He has been told to drink loads to keep the bladder flushed due to the infection risk of stagnant urine (nice eh?) and it does help. I know I'm not adding anything here to your post but I wanted to thank you as it does answer a few questions in our minds as to why the sphincter don't work anymore.

Good luck and I hope that improvements continue to be made over time, I can well imagine how disheartening this all is for you. I know how depressed John feels about it all, the fear of the smell, the bags, the ulcers from the straps, the pads and padded pants (our little granddaughter said, "Gaga you're too big to wear a nappy" when she spotted him getting dressed, fortunately we laughed about it, but what with his 38Cs (Gaga, you've got boobs like mummy has) it's all we can do! Thank goodness for the little ones and the joy they bring amidst all this life changing stuff.

I sincerely hope for improvement for you both, I know how debilitiaing this can be.

Devonmaid
User
Posted 19 July 2017 22:41:18(UTC)

Thanks J-B and Devonmaid for your posts. It is clear from yours and other post on this forum that we are all in a different place for one reason or another (a surgeons skill?). I am able to see some positive progress with incontinence which is good but I see absolute zero progress towards any degree of erection. My heart goes out to you all.

Thanked 1 time
User
Posted 27 July 2017 10:11:17(UTC)

It seems logical that skill is involved in getting the best outcomes, and there is certainly research evidence that the hospitals with the best results are those doing lots of prostate operations so their surgeons are well experienced.

However there is also enormous variation between patients. When I asked my own surgeon about continence he told me of a recent patient who never needed pads, he was continent as soon as the catheter was removed. But that is unusual, apparently most men take 4-6 months to recover continence and for some like me recovery progresses slowly over (so far) numbers of months in the teens. The good news is that one study showed that for those not regaining continence quickly there are still continuing improvements for up to three years.

I suspect that the reason is that we are all slightly different in our construction, and those differences means that what is left after removing the prostate will function better or worse depending on the individual and thus require less or more recovery time.

Much the same is true of the nerves controlling erectile function. They are actually microscopically small and not visible to the surgeon. However it is known they usually travel next to small blood vessels which are visible. To "spare" the nerves, what the surgeon does therefore is preserve the thin outer layer of tissue on each side of the prostate which contains a visible small blood vessel. My guess is that in some people the most obvious small blood vessel isn't in fact the one with the nerve alongside, so the nerve gets damaged. (Mind you there is always some damage, that thin layer is bound to suffer from the process of being separated from the prostate underneath and there will be further variability in how well and fast it is able to recover).

 
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