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Incontinence 1 year on after a radical prostatectomy

User
Posted 04 November 2015 16:42:24(UTC)

I had a radical prostatectomy last November. Everything seemed to go OK. I had little pain or discomfort, was soon fairly active again, and my PSA levels are still negligible (<0.03). Yippee!

However, the incontinence was and is pretty awful. I have kept careful records of daily urine loss into pads from the time the catheter came out. Initially, I was losing about 450 grams per day. One dreadful day in February it topped 900g! For a few weeks after the op there was little improvement but in the spring it started to decline, although it was rather two steps forward and one back!

Now, nearly 12 months on I am stuck at about 30g per day loss and have been there for about two months. That's a huge improvement on where I started but it's still enough to have a significant impact on my life. I'm getting pretty depressed about the lack of progress. I have kept up the pelvic floor exercises for all this time, but who knows whether they do any good or not.

So I'm wondering now whether this is as good as it's going to get on the current regimen and that I'll need some surgical intervention to get dry, or whether things might still get better spontaneously. I recall our "Mens Health" physio in the early days drawing me a graph of urine loss against time showing sudden improvements followed by periods of no progress. But since medics seem to monitor progress by pads per day and you can hardly use half a pad, then that hardly seems surprising does it?

So, I'm hoping there's some experience out there that can give me some pointers on what my prospects look like over the next few months.

Thanks

Roger

User
Posted 05 November 2015 00:20:02(UTC)

Hi,
assuming that you are doing the PFEs correctly, they should have done their job by now so it seems on the face of it that your incontinence is not related simply to retraining the pelvic floor. Our urologist doesn't believe that PFEs actually make any difference anyway :-( So what else could it be, and can it still improve? That depends on a number of things such as:
- are you dry at night?
- do you leak more as the day wears on and you become tired?
- alternatively, do you leak only when lifting or being energetic?
- do you drink cranberry juice (proper stuff not 'made from concentrate)?
- have you tried cutting out all caffeine - decaffeinated tea is not at all unpleasant
- do you drink a lot of beer or fizzy drinks?

Can you get another appointment with the Men's Health physio?

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


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User
Posted 04 November 2015 22:24:28(UTC)

Sorry Roger can't offer any experience. My husband now having to decide which treatment after nearly 3 years active surveillance,he is 71 now. Must admit this is our worry about operation,although he has been offered the operation,problem is alternative of radiotherapy is as daunting with other effects to bladder and bowel. So difficult!

User
Posted 05 November 2015 00:20:02(UTC)

Hi,
assuming that you are doing the PFEs correctly, they should have done their job by now so it seems on the face of it that your incontinence is not related simply to retraining the pelvic floor. Our urologist doesn't believe that PFEs actually make any difference anyway :-( So what else could it be, and can it still improve? That depends on a number of things such as:
- are you dry at night?
- do you leak more as the day wears on and you become tired?
- alternatively, do you leak only when lifting or being energetic?
- do you drink cranberry juice (proper stuff not 'made from concentrate)?
- have you tried cutting out all caffeine - decaffeinated tea is not at all unpleasant
- do you drink a lot of beer or fizzy drinks?

Can you get another appointment with the Men's Health physio?

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


Thanked 1 time
User
Posted 05 November 2015 06:19:54(UTC)

Sorry to read that you are struggling to come to terms with your current situation Roger.

Depression for something like this may be addressed by looking at this from A N Other's point of view? This is not meant glibly, as seeing things differently has got me through to where I can deal with my odd leakage.

Some men are not around any more to leak. Other men have implants and kit fitted. Some are leaking more than 30g a day. Others may be grateful to be only leaking 30g a day. Some men have the odd "tired squirt at the end of the day or when forgetting to tense when lifting something really heavy, or exerting (this is me). Some men are dry, lucky them.

I gave up on the PFEs as they wore me out and seemed to make no difference to my regaining control. If they do not appear to be working for you, you could give them a rest and see how that goes?

Beer or Lager, fizzy drinks do not seem to affect my control. Any liquid leaks when I am tired, busy doing a lot of manual work at the moment, there is less of an issue if I am doing desk work. If I leak it is usually around 6pm, so I stop working, and mostly can prevent it.

Do you make a note of when and why you leak, as Lyn asks above, is it when you are tired, or exerting?

Do you wear boxers or briefs? I have found that snug briefs work as an adequate control easier for me, used to wear boxers. The support that briefs give is enough to help me stay dry, until the evening and I get tired, and even then not every evening is an issue. If you are wearing briefs, have you considered tighter ones?

hth

atb

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.
User
Posted 05 November 2015 11:05:30(UTC)

It might be time to ask your GP to refer you for a urodynamic test. That should highlight the type of incontinence (stress, urge etc) and identify other factors like strictures. With the results it is easier to suggest solutions. If nothing else, you can marvel at the amount of complex machinery and the number of giggling operators needed to evaluate incontinence.

30ml per day is not a lot, so if all non-surgical interventions fail, that level is probably in the envelope of a bulbar sling, not a particularly intrusive operation. I was leaking much, much more than you and it worked for me for about 9 months (an inguinal hernia may have put paid to it too), so should be a lot longer lasting for lower leakage. Also the sling is more likely to be available through the NHS as it is not overly expensive (but does need a surgeon thoroughly familiar with it to do the operation to make sure the tension is correct).

Sphincter bulking agents can work where the problem is a distortion of the voluntary sphincter, but the long-term effectiveness seems to be a matter of debate. For one member on the message board, the improvement only lasted a day before his body decided that something foreign was in there and returned his sphincter to the status quo.

Last surgical resort (and way over the top for your case I think) is an artificial sphincter. Those are particularly expensive a) to buy and b) to implant, and probably are less likely to be available via the currently cash-strapped NHS. I'm running a diary of experiences for one of those - due to be activated on 2nd December. No, I can't wait.....

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.
User
Posted 05 November 2015 16:06:33(UTC)

Thanks for the helpful suggestions/questions guys! Answers/responses to some of your points are:

* I mainly drink decaf with one cup of proper tea first thing to get me going and one after lunch

* I drink few fizzy drinks but not tried cranberry juice - but I will now

* On a typical day I'll leak about 15g overnight, 8g in the morning, 5g in the afternoon, and 4g in the evening. So there doesn't
seem to be a deterioration as I get tired later in the day. I put the higher figure in the morning compared to later in the day down to my daily energetic walking on the south downs (up and down peedown actually! LOL). I sometimes am aware of a sudden spurt but often it seems to be an unnoticed slow leak

* I am due to see the physio in two weeks time

* I tried to cut down on the severity of my pelvic floor exercises for a couple of weeks with no effect

* I wear briefs. I'll try wearing tighter ones

* I've not heard of " a urodynamic test". I'll ask my GP.

Again; thanks for the helpful advice!

Roger


User
Posted 05 November 2015 16:55:52(UTC)

Hi Roger,

If it's any consolation, you're not alone...

I'm now 16 months post op and still leaking.... 

I've not done any scientific measurements as to how much, other than the usual ' pads per day ' comparison, which is not a reliable guide to compare with others in our situation as you well know. 
I have however made some progress since the '12 month deadline'  that some medics talk about, but am still leaking and still using 1 pad per day on average. ( you can't use half a pad can you?  ) 

I, like you no doubt, have religiously done my PFE exercises since well before my op..... and still doing them now!  I'm not convinced in my case that it has made the slightest difference.....
My local consultant has offered to refer me back to the team who operated on me ( I had out of area surgery )  for an 'assessment'  with a view to surgical intervention ie. bulbar sling insertion etc....
At present I'm reluctant to proceed with this referral and am inclined to leave well alone for the time being...

I can't deny that at times I get frustrated and despondent about all this, but when I read the trials and tribulations that others on this forum are having to endure, I very quickly snap myself out of my mood and realise that I have to date been very lucky! ( check out my profile ) 
We are all different in how we cope with things.....but my thinking at the moment is, I'll manage the side effects and learn to cope with them for now and hope that I can stay free of any biochemical re -occurrence in the future

Best Wishes
Luther




 

 

User
Posted 06 November 2015 15:33:55(UTC)

Thanks Luther!

User
Posted 06 November 2015 17:16:21(UTC)
Urodynamic testing:

Description


Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.
User
Posted 09 November 2015 20:56:18(UTC)
My OH has similar issues. He had his surgery on Dec 1st last year, and expected to be fully continent and having sex by January 1st.

He has good days and bad days. He uses tena level 2 pads, and usually one or two a day. It depends on what he's doing as to how many. His disaster zones are:

Four pints of Marstons pedigree
Mixing wine and pedigree
Shifting hay bales and delivering calves
Filter coffee

He can't drink decaf stuff- he tried both tea and coffee and it made him itch all over. But he has cut down his coffee a fair bit.

Like you, he hates it and is unhappy about it. But I think he is coming to terms with it. He doesn't leak at night, and hasn't done from a couple of months in except for a memorable night when he had a raging cold and sneezed all night. We have an appointment at the beginning of December to see the continence team. We'll see what the choices are then.

I keep trying to tell him that he's lucky he's got to 58 without the odd squirt, but I don't think it helps! Try to look on it as a side effect of being alive
User
Posted 10 November 2015 12:14:06(UTC)
Hi Louise

My experience is much the same I had the op 8th Dec 2014 and have not seen much improvement in the incontinence department I wear padded pants plus pads still get through 4-6 a day!
I have seen a Phisio to make sure I am doing the exercises correctly, I am but not helping. Hopefully will be referred after my check up in Dec. I am a farmer also and getting a bit p***ed off, excuse the pun.
Malcolm
User
Posted 10 November 2015 13:03:58(UTC)

Hi Malcolm

When I was running at that level of incontinence, I gave up on the pads and switched to a Coloplast external sheath plus a leg bag. Without that, it would have taken me much longer to get back to work because of the inconvenience of having to keep changing pads, or much worse, changing the disposable briefs. After a bit of practice, the leg bag is very easy to manage and mine was available via NHS (free of charge in Wales). The other advantage is that you feel when you are leaking, helping to retrain your muscles.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.
User
Posted 10 November 2015 18:44:09(UTC)
Hi Tony

Thanks for your reply, I do use them if I am at a party or playing golf. I also have found the afex system from iMEDicare good, most days I manage with pads sometimes get a bit soggy!

Malcolm


User
Posted 10 November 2015 20:38:16(UTC)

Hello All

I had my RP 6 months ago, but regretfully I am still suffering from " the dribbles"? whenever I start walking ( otherwise dry) even though I am religiously doing my Kegels.
Initially I was advised I should regain continence after 6-8 weeks, but after 8 weeks the experts now advise anything between,
3 and 12 months is normal. My consultant advises ( having carried out bladder and a cystoscopy checks )that all is well and it's just a matter of time. I wonder whether this is just to keep my spirits up, or is this " the norm"?
As an active golfer the delay is really getting me down!
BestR
Ken44

User
Posted 11 November 2015 00:06:57(UTC)

Hi Ken, some questions -
- has anyone checked to make sure you are doing the Kegels correctly?
- do you remember to tense as you start moving?
- have you tried cutting out caffeine and drinking plenty of cranberry juice?
- is there a possibility that you overdid things after the op? Perhaps starting the golf again a bit too soon, or cycling, etc?

Sometimes it helps to understand why incontinence occurs after surgery. There are a number of causes but one of the most common is related to toilet-training. When they cut the prostate out, the main valve was removed that controls flow out of the bladder and down the urethra. For most men, this is sort-of re-stitched into position in the space where the prostate was. When you were about 2 years old, your brain had to learn what the signals were that your bladder was full or how to stop and start the flow of urine and now, post-op you have to learn the same thing over again. It sounds like you are almost there but your brain still isn't automatically tensing the muscles as you start to move so you have to continue making it a conscious effort until it becomes habit again.

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


User
Posted 11 November 2015 08:14:12(UTC)
Warning. A view from the "other" side.

It does seem to be an unfortunate fact, but isolating the reason for post-prostatectomy incontinence is quite difficult. Once the integrity of the urinary system is upset, it can seem like pot luck whether continence is preserved (the odds of dryness are good but that does not help the men who are on the "wet" side). Clear medical causes like over-active bladders, strictures and urinary infections can be attacked, but if there is no clear cause, the evidence for solutions seem to be less well defined.

PFEs (Kegels) usually are the first stop and have been my particular bète noir; if I had a £1 for each time I have been told that they are the answer, I would not be rich, but the cost of my artificial sphincter implant would have been offset very slightly. I was still being given the Kegel message, even after a physio admitted that my pelvic floor was like a Bulldog Clip. If Kegels are being done, and continence is regained, then it is assumed that they are the reason without looking at other factors, for example, would continence have been regained by that point anyway? It is impossible to say.

In my mind, the issue is that having looked at and tried the various "solutions" (in inverted commas because some are heading for snake oil), the biggest hurdle is learning to reprogram the brain to stop incontinence from dominating life. After all, cancer has been beaten. Shouldn't we just be glad we are alive and that we are not in the group of men (for whom I have an infinite amount of admiration) who are struggling with HT, RT and similar treatments? For some men, reprogramming the brain may work. For others, unfortunately it doesn't.

The corollary I have cited several times is that messing about with nature (urinary system = nature) is rather like the twin carburettors on my Triumph Dolomite. For several years of ownership, they worked perfectly. However, after the jets were replaced, the carburettors had to be retuned and rebalanced once every two months or so. Even expert mechanics could not restore the previous level of reliability.

If I could postulate an approach, based on my experience, it would be to try all the reasonable remedies first (i.e. avoiding snake oil, and there is a lot of it out there). If the remedies don't work, try the mechanisms for coping with and managing incontinence to find those that match your lifestyle, and at the same time, work on your brain (with help if necessary) to reduce the size of the elephant in the room so you can concentrate on more important things.

Hope something here helps.
Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.
User
Posted 11 November 2015 11:04:35(UTC)

Originally Posted by: Online Community Member
Warning. A view from the "other" side.

It does seem to be an unfortunate fact, but isolating the reason for post-prostatectomy incontinence is quite difficult. Once the integrity of the urinary system is upset, it can seem like pot luck whether continence is preserved (the odds of dryness are good but that does not help the men who are on the "wet" side). Clear medical causes like over-active bladders, strictures and urinary infections can be attacked, but if there is no clear cause, the evidence for solutions seem to be less well defined.

PFEs (Kegels) usually are the first stop and have been my particular bète noir; if I had a £1 for each time I have been told that they are the answer, I would not be rich, but the cost of my artificial sphincter implant would have been offset very slightly. I was still being given the Kegel message, even after a physio admitted that my pelvic floor was like a Bulldog Clip. If Kegels are being done, and continence is regained, then it is assumed that they are the reason without looking at other factors, for example, would continence have been regained by that point anyway? It is impossible to say.

In my mind, the issue is that having looked at and tried the various "solutions" (in inverted commas because some are heading for snake oil), the biggest hurdle is learning to reprogram the brain to stop incontinence from dominating life. After all, cancer has been beaten. Shouldn't we just be glad we are alive and that we are not in the group of men (for whom I have an infinite amount of admiration) who are struggling with HT, RT and similar treatments? For some men, reprogramming the brain may work. For others, unfortunately it doesn't.

The corollary I have cited several times is that messing about with nature (urinary system = nature) is rather like the twin carburettors on my Triumph Dolomite. For several years of ownership, they worked perfectly. However, after the jets were replaced, the carburettors had to be retuned and rebalanced once every two months or so. Even expert mechanics could not restore the previous level of reliability.

If I could postulate an approach, based on my experience, it would be to try all the reasonable remedies first (i.e. avoiding snake oil, and there is a lot of it out there). If the remedies don't work, try the mechanisms for coping with and managing incontinence to find those that match your lifestyle, and at the same time, work on your brain (with help if necessary) to reduce the size of the elephant in the room so you can concentrate on more important things.

Hope something here helps.


Good post Tony,

My pelvic floor muscles are very strong ( confirmed by physio ) ... I walk every day with the dogs and consider myself pretty fit for my age group. 
A very experienced surgeon  performed my op....
Recovery from surgery was also quick and  straightforward with no complications, but I still leak at 16 months post op.. ( I use 1 pad per day on average )
In my view I could have done no more to further aid my recovery to full continence.

I have been offered a referral for investigation as to whether I would be a suitable candidate for a Bulbar Sling implant, but at present I'm going to hold fire on that one and just concentrate on living with and managing the situation.

If at any time in the future things have not improved any further and I find myself struggling then maybe I will take up my consultant's open invitation for a referral, but my thinking at the moment is to wait for at least another year and see ......
Luther 

User
Posted 14 November 2015 15:45:06(UTC)

What I'm puzzled out regarding my experience is this. I've had a frequent urination problem for as long as I can remember and I recently wondered whether this was adding to my problems. So I've been attempting some bladder training by resisting the urge to go. I've noticed that even when the urge is so strong that its painful I DON'T see any leakage from my penis!

So what sort of sense does that make? My incontinence cannot be because of weak pelvic floor muscles can it? And I don't notice my leakage rate going up in the evening so it's not due to the muscles getting tired is it?

Maybe its because my brain gets confused and forgets which muscles are what? So how do you improve that?

Roger

User
Posted 14 November 2015 17:00:40(UTC)

What I'm puzzled out regarding my experience is this. I've had a frequent urination problem for as long as I can remember and I recently wondered whether this was adding to my problems. So I've been attempting some bladder training by resisting the urge to go. I've noticed that even when the urge is so strong that its painful I DON'T see any leakage from my penis!

So what sort of sense does that make? My incontinence cannot be because of weak pelvic floor muscles can it? And I don't notice my leakage rate going up in the evening so it's not due to the muscles getting tired is it?

Maybe its because my brain gets confused and forgets which muscles are what? So how do you improve that?

Roger

User
Posted 15 November 2015 18:20:22(UTC)

Roger 46,

I had an RP in May 2014, I'm still leaking, the medical experts tell me its perfectly normal ! ... I hope there right

however I've noticed one thing that makes leakage even worse is when I take Cialis, 

User
Posted 15 November 2015 18:50:45(UTC)

Originally Posted by: Online Community Member

Roger 46,

I had an RP in May 2014, I'm still leaking, the medical experts tell me its perfectly normal ! ... I hope there right

however I've noticed one thing that makes leakage even worse is when I take Cialis, 



That's an interesting comment  titanic!

My continence appears to improve after taking cialis!!


User
Posted 16 November 2015 19:44:24(UTC)
My OH had a test to see how strong his pelvic muscles were. Very good apparently. But still he leaks. However, his foes seem to relate to physical exercise and how much he has done.

He also tried the bladder retraining thing. He tends to do this when he's driving. One more service station is the post prostatectomy version of Russian Roulette
User
Posted 27 February 2016 16:20:18(UTC)

I saw the consultant yesterday and was offered the possibility of further surgery (artificial sphincter or sling). I'm definitely going to go for one or the other. And I feel much better having made the decision!

Roger

User
Posted 27 February 2016 16:37:49(UTC)

Originally Posted by: Online Community Member

I saw the consultant yesterday and was offered the possibility of further surgery (artificial sphincter or sling). I'm definitely going to go for one or the other. And I feel much better having made the decision!

Roger



Good luck Roger,

Please keep us all posted on your decision / progress.... 

I for one will be very interested in how things turn out for you as I still suffer from leakage at 20 months post op.

I was offered a referral for investigation into suitability for similar treatment.

At the moment I'm holding back for the time being in the ( perhaps optimistic ) hope that things will improve further in the year ahead..

Luther

User
Posted 27 February 2016 17:43:57(UTC)
Just in case anyone has not seen my diary of experience with a sling and subsequently an AUS, it can be found here .
Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.
User
Posted 27 February 2016 17:52:28(UTC)
R

I was dry 4 days post catheter after RARP but lost my continence following a series of ops that finished early Nov 2015, I was leaking between 40 and 200 ml a day. I went onto the sheath system for a few weeks and this seemed to help with bladder training. The leaks gradually dropped to about 10 ml at which point I decided enough was enough and I would no longer be incontinent. I am now at about 3 ml a day,at 40ml a day my consultant offered sling or AUS. I see him again this week four weeks from last seeing him. This week I got his report following cystoscopy saying the sphincter was inoperative so not sure how I can manage to stop urinating, has it just recovered ?Someone on here mentioned mind traing for bladder control so I guess that is what I have been doing.

Hope all goes well whichever route you take.

Thanks Chris
User
Posted 26 September 2017 18:58:43(UTC)

There's some great responses and advice in here.
I'm 10 months on from Radical Protastectomy, then hormone therapy and radiotherapy.
I still leak - and typically change my smallish pad once a day.
Does anyone else have the biggest problem I have? Urgency and frequency...without a doubt more of a problem than it was before I had my prostate removed! I'm taking Oxybutinin 3 times daily for it and that helps, but it's still a major problem.
I would say I feel the need to use the toilet to pee every 30 mins.
Does anyone else suffer this? It's pretty debilitating to be honest, especially at work. And I can't hold it sometimes. When I need to go I REALLY need to go.

User
Posted 26 September 2017 20:55:22(UTC)

It sounds like you might benefit from bladder retraining. Some men find that the message from their bladder to their brain gets messed up after PCa treatment so that the brain believes the bladder is full when it isn't. Alternatively, you are suffering urinary retention and not emptying properly, or you could have an over-active bladder as a result of RT. There could even be a bit of infection lingering. Ask for a referral to your local incontinence service or - if there isn't one in your area - back to urology. They may put you through some urodynamics tests and scan you to see how much you are retaining in your bladder after weeing and can then advise you from there.

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


User
Posted 27 September 2017 09:38:56(UTC)
Hi,

I too had the problem after surgery and struggled to hold it but sometimes there was no holding it back. Did my pelvic floor exercises but still had the problem. Went for a scope and they found a couple of clips left over from the Surgery which were irritating the uretha, once removed the problem also went away. Although I still feel the need to go when the bladder ain't full but this is getting better as time goes by.

Cheers
User
Posted 28 September 2017 23:37:56(UTC)

Hi Colin

Have you questioned why you are taking  Oxybutinin ? Are you dry at night completely ?

I agree with Lynn, ask for uriflow tests.   Are you actually emptying ? - ie easy to do yourself, flow etc .. just time flow into container.

Just looking at what you have posted.  Every half hour ? > 20 times a day ?  (20 x 100ml = 2 litres) Are you drinking a lot of caffeine ?

I have been lucky, full control (better flow than before op)

Average day will be : dry at night (8hrs ish)     5 - 7 times a day (I empty about 300 ml max in about 20 seconds)

Flow rate is around 10 ml per sec as you age over 60+,  bladder 250 - 350 ml ish - you can do the maths to empty

 (probably >20ml per sec as a teenager !).  I've never measured total volume in 24 hrs, it should I understand be around 1500 - 2000ml.

I have noticed I do however get the the urge to go (and still do) a lot earlier than I used to (which I ignore). 

I hope you are sorted ...    some simple tests should give you an idea on how much your urethra is passing, it should help to diagnose what exactly may be happening.  ie in my opinion , get some metrics.      

Regards

Gordon

 

User
Posted 29 September 2017 14:44:03(UTC)
Colin

As already suggested testing and training are the way to go.

You might want to look into the side effects of oxybutynin in elderly patients, I am guessing from your username you might be 68. There are studies that oxybutynin has an effect on cognitive behaviour. I changed to solifenacin. I don't think either of them really had the desired effect.

As regards the urgency and frequency I am in the same situation as yourself. I do have a super pubic Catheter to complicate matters. My RT staff are saying my problems are caused by the Catheter, previous SPC have never caused capacity problems. My urologist says it is the effects of RT. My bladder capacity seems to have shrunk to around 100 ml since the RT finished 4 months ago. It has also been suggested that the RT has caused scarring to the bladder and reduced the capacity. Whilst in bed or lying down my urge to urinate is quite low, as soon as I get up the urge is at 100 percent. Even filling a drinking bottle or having a small drink of have water I sometimes instantly leak urine or blood and urine.

Like Sanders I have had issues with migration of clips from the surgery.

How much urine are you actually passing when you urinate.

It might be helpful to give details and timelines of your treatment in you profile.

Thanks Chris





User
Posted 11 October 2017 14:54:17(UTC)

Hi Guys and Gals,

Firstly may I say how much relief and help I have found from the posts on this topic, in particular knowing that I am not the only sufferer trying to understand all possible healing options, whilst getting on and enjoying life.

I am 72 and had a RP in June 2017, only four months ago, and I'm hopeful that my aggressive cancer has been stopped in its tracks. Time will of course tell. I am however suffering from incontinence - a constant flow during the day but thankfully dry overnight. I am doing my Kegel exercises and several times a day am trying to hold tight my bladder for as long as possible. But the moment I relax the flow starts. I wear incontinence pants, and use a DribbleStop clamp whilst out and about. I can live with this inconvenience (if you'll pardon the pun), but would really like to find a way of solving the problem on a permanent basis, perhaps in time an AS?

What I fail to understand is why when flat on my back or indeed sitting my bladder fills and I can eventually feel the urge the moment I stand up the flow begins and the bladder fails to fill. Gravity? At least with the clamp the bladder does fill and the urge eventually comes.

Any suggestions would be extremely gratefully received.

Jim

User
Posted 11 October 2017 16:25:00(UTC)

Hi Jim

Yes, my experiences almost exactly.  If it's any consolation, at about the four-five month threshold, I regained a little bladder control, enough to make it to the bathroom, or from the car to the gents in a motorway service area but no more.  Probably it is a little early to start thinking about an AUS - try other non-surgical solutions first.  I found a Conveen sheath and bag was unobtrusive and convenient (and available on prescription - free in Wales), and despite assertions that it would make me lazy and slow recovery, it didn't (or at least, didn't make me any worse). The DribbleStop was ok-ish, but I was worried it might be causing permanent tissue damage so I didn't use it too much.

Just in case you do head for an AUS, the diary of my experiences is here : Diary of AUS Experiences

Hope this helps!

 

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.
User
Posted 06 November 2017 10:53:36(UTC)

Hi Tony,

Thank you so much for your comments and suggestions. I will follow up on the Conveen sheath and bag. I will also try to be patient and continue with the exercises, whilst researching an AUS. Thank you also for the link to your AUS Experiences.

Wishing you well.

Jim

User
Posted 06 November 2017 13:47:53(UTC)
Hi Jim
Just a note to say that I used the Conveen sheath and bag and it made a huge difference when going out. No pads to change and a great feeling of freedom and comfort.

All the best

Kevan
 
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