Incontinence 1 year on after a radical prostatectomy

User

Posted 04 Nov 2015 at 16:42

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 04 Nov 2015 at 22:24

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 Nov 2015 at 00:20

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

User

Posted 05 Nov 2015 at 06:19

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

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 05 Nov 2015 at 11:05

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 Nov 2015 at 16:06

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 Nov 2015 at 16:55

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? http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif )

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 Nov 2015 at 15:33

Thanks Luther!

User

Posted 06 Nov 2015 at 17:16

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 Nov 2015 at 20:56

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 Nov 2015 at 12:14

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 Nov 2015 at 13:03

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 Nov 2015 at 18:44

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 Nov 2015 at 20:38

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 Nov 2015 at 00:06

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.

Edited by member 11 Nov 2015 at 00:08 | Reason: Not specified

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

User

Posted 11 Nov 2015 at 08:14

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 Nov 2015 at 11:04

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 Nov 2015 at 15:45

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 Nov 2015 at 17:00

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

Roger

User

Posted 15 Nov 2015 at 18:20

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 Nov 2015 at 18:50

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!!

Edited by member 15 Nov 2015 at 18:52 | Reason: Not specified

User

Posted 16 Nov 2015 at 19:44

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 Feb 2016 at 16:20

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 Feb 2016 at 16:37

Originally Posted by: Online Community Member

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 Feb 2016 at 17:43

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 Feb 2016 at 17:52

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 Sep 2017 at 19:58

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 Sep 2017 at 21:55

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.

Edited by member 26 Sep 2017 at 21:58 | Reason: Not specified

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

User

Posted 27 Sep 2017 at 10:38

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 29 Sep 2017 at 00:37

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 Sep 2017 at 15:44

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 Oct 2017 at 15:54

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 Oct 2017 at 17:25

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 Nov 2017 at 10:53

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 Nov 2017 at 13:47

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

User

Posted 17 May 2018 at 19:25

Im approx 18 months post surgery and am still incontinent. I think the hormone therapy is probably making me depressed too.

I’m waiting to see the Consultant urologist again to discuss further surgery eg. An AUS, as something has to happen.

Without a doubt, before a protastectomy, no way are you REALLY told how incontinent you could become and for how long.And im only 49.

User

Posted 28 May 2018 at 11:26

I had urodynamic test approx a couple of months ago and found out I was filling my bladder and voiding it ‘normally’. This was approx 12 months following robotic protastectomy. But so what really? Now a couple of months later, I am still incontinent, suffering what seems to be ‘gravitational incontinence’. As soon as I stand up and start walking about, gravity takes hold and I pee. If anything, it’s gotten worse and it doesn’t seem to matter what I drink. Caffeine doesn’t seem to make the incontinence worse, but it does make my bladder feel more irritated.

I’ve spoken again with my prostate cancer specialist nurse and she has said if things arent right now, they probably won’t be and that surgery will probably be needed. So I’m waiting to see the urologist again, to discuss this further.

I’m so thankful my cancer is under control but the incontinence Has been and continues to be pretty horrible really. And I’m 49.

I’m hoping surgery sorts it.

User

Posted 28 May 2018 at 22:42

I am in exactly the same situation as you and I’m 4 years past open surgery and just one and a half years past salvage radiotherapy.

I still wear one pad per day and leak around a teaspoon on a good day if I have not been very active to 4 to 8 teaspoon fulls if I am active doing DIY or cutting the grass etc. I have tried going without a pad, but it catches me out unexpectedly so need to wear one just in case as it is usually wet by the end of the day. It’s fine without a pad overnight. I have got into the habit of recording the weight of yesterday’s pad each morning to keep tabs on the amount I’m leaking.

I now have undetectable PSA, long may that continue, and can cope with wearing a pad each day, but my concern is that when I get older, I am now 70, general muscle weakness will make it worse. I have just completed a urodynamics study and am awaiting the results, but the nurse said it was normal and she advised I should stop taking over-active bladder medication. I was advised by my urologist to take Betmiga over a year ago and it was making no difference at all. As you say it is purely down to walking and being active that causes the leakage. I might ask for a camera inspection of the bladder/urethra junction, but not sure if I want surgery to implant any mechanical device that could fail in time.

User

Posted 28 May 2018 at 22:44

Have either of you tried a Conveen sheath or Dribblestop?

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

User

Posted 28 May 2018 at 23:09

No Lyn I never have. I have thought of putting a peg on it occasionally (joke), but have not heard of a dribble-stop. Are they freely available and would one replace the need for a pad?

User

Posted 28 May 2018 at 23:34

Hopeful that a couple of members will post tomorrow on their experiences with each option. In the meantime here is some useful info:

https://www.stressnomore.co.uk/dribblestop-male-urinary-incontinence-clamp-80435.html

https://www.coloplast.co.uk/conveen-optima-en-gb.aspx?gclid=EAIaIQobChMIj4Ts-bqp2wIVbrftCh0g3QdAEAAYASAAEgLF8fD_BwE&gclsrc=aw.ds

Might just change your life and must be worth trying before you resort to surgery?

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

User

Posted 29 May 2018 at 00:27

Colbo, having just mentioned this on another post, I wonder whether it would be helpful for you to fill it in to take to your appointment with the specilaist?

https://urology.wustl.edu/en/Patient-Care/~/media/Files/Urology/EPIC-QOL-final-kaw-7-11.ashx

Edited by moderator 16 Apr 2024 at 09:33 | Reason: hyperlink didn't work first time

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

User

Posted 29 May 2018 at 08:52

From personal experience, Dribblestop does work but a) is very expensive for a simple bit of plastic, b) can be painful c) needs to have the foam pads stuck back on from time to time and d) can come undone at the most embarrassing times. However, on the general scale of effectiveness of incontinence aids that are not intrusive, it's not too bad. The Conveen solution is cumbersome, but effective and (on the Welsh NHS anyway) is free of charge because the bits come on prescription.

Before going down the surgical path, I tried a few other "solutions" but found they were tending towards snake oil.

Yes, I sympathise. The problem is with so many other men having problems with ongoing high PSA, CT, RT and post operative issues, why are we incontinents making a fuss over a bit of wee? Because without a really strong personal mental state, incontinence just eats away a you. And, no, it doesn't help to be told you are not doing pelvic floor exercises properly. Please don't get me started on that subject. Experiment. Find the solution that works best for you (and is within your budget) and resolve to try to get on with life as best you can.

For the engineers out there, if you can land a spacecraft on a comet goodness only knows how many million miles away, you can come up with a solution to this problem that works!

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User

Posted 29 May 2018 at 20:57

Thanks for the link on Dribblestop Lyn. I have had a look, and for the info Tony, but I dont think I’ll be trying one for the following reasons.

1- they are extremely expensive for what they are.

2- the website says they don’t interfere with circulation, but I doubt that.

3- I think the pads, at one per day, are less conspicuous and I can go to the gents and urinate in the normal way without probably having to go into a stall and remove and reinstall the device.

4- when removing the device to urinate a urethra full of urine will want to escape in an uncontrolled manner. This must be messy.

5- I don’t pay for my pads so it looks like I’ll be wearing them for some considererable time.

User

Posted 29 May 2018 at 23:46

The method that works best will vary from man to man according to his individual circumstances and what he is doing.

For a time towards the end of my RT I was needing to pee up to 8 times a night and frequently during the day and thankfully but belatedly I found the Conveen system( (essentially the same as the one given in the link Lyn gave).

I found this worked very well for me, particularly as I was needing to travel a long distance on a coach without 'facilities' among other things or at night. However, I found it necessary to use both the belt and the elasticated stocking to stop the bag slipping. This was OK generally but but would have been too cumbersome and prone to slip down the leg if I walked quickly or involved a lot of quick movement. So I think these drawbacks would apply for a man using this system to avoid dribbling but would work well for unhurried movement.

Barry

User

Posted 10 Aug 2019 at 10:31

I am now 74 and since my last post on 6th November 2017, I carried on using pads (1 or 2 a day), with the DribbleStop clamp, which I personally found very helpful, and pelvic exercises. I tried but did not find the bag solutions very practical. Over a year I actually reached the stage of being OK living with my disability, certainly better than being underground, and was elated that my PSA was not on the rise (and thankfully still isn't)!

Then in 2018 my prostatectomy consultant suggested I visit the Urology Clinic in Reading and consider an Atoms Sling, which I had not heard of before. The sling is invasive, but not nearly so complex as an AS. It involves the insertion of a internal valve which can be increasingly pressurised until the leaks are eliminated. There are no moving or external components. I had this procedure in June 2018 and it has been entirely successful. Only the occasional drip and I'm keeping my fingers and legs crossed :-)

I realise that my future 6 monthly PSA checks may show that the dreaded C is on the move again, but for now I'm extremely grateful for all the help from this country's health services, and indeed the comments posted on this blog.

User

Posted 10 Aug 2019 at 20:03

Hi Jim

I'm just coming up to first anniversary of RP and incontinence is still a major issue. I'm fairly ok at night, usually get up twice and can make it to loo. I leak a bit in between so wear a pad. However once I'm up and moving about it's a different story and I have no control at all.

My consultant is now saying I will probably need either a sling or AUS. If a sling he is suggesting the ATOMS so good to hear that is working for you. From what I've read the ATOMS is recommended for mild to moderate incontinence and mine is definitely severe - what level were you at before the implant?

For the AUS he says he now fits the Zephyr ZSI 375, rather than the more common AMS 800, because it has less parts so less to go wrong.

Does anyone else have experience of the ATOMS or the ZSI 375?

Any information or advice will be gratefully received.

Thanks

User

Posted 10 Aug 2019 at 22:08

I found two comparisons of the results from the ZSI 375 and the AMS 800 here and here. There are quite a few more references to the ZSI 375 all showing much the same level of performance as the AMS 800. The second link above has a couple of pictures showing the components of each AUS.

Although I have an AMS 800, please note that I don't have any relationship to, or interest in Boston Scientific, and I am in no way a medical expert so please don't take anything I say as a recommendation or otherwise!

Just looking at the ZSI 375, I can see the advantage of having the opportunity for post-operative adjustment. The AMS 800 is a one-shot job and can't be altered without invasive surgery, so depends heavily on the skill and experience of the surgeon. The ZSI 375 discussions highlight the lack of a need for an abdominal incision for the reservoir, but it does need two incisions around the scrotum for the implant. Personally I found the abdominal incision far less painful than the scrotum incision after the operation. Also, the ZSI 375, is a big chunk of stuff to have in the scrotum. With the AMS 800, I only have the pump unit there - it is a very small, if rather slippery unit. It is not mentioned in any of the documentation that I read, but does the ZSI 375 need a removal of a testicle to make space for the pump and reservoir? Looking at the pictures in the second link above gives a comparison of the relative sizes of the components.

Fingers crossed, my AMS 800 is continuing to work well. It is not perfect, but is considerably better than the virtual free flow I was experiencing before its insertion.

I can't comment on the ATOMS sling. I had a non-adjustable sling implanted (because I thought my level of incontinence was not too bad at the time - on reflection I should have gone straight for the AUS). It worked well for six months or so, but then, progressively, began to have less and less of an effect.

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 11 Aug 2019 at 23:30

Hi Tony

Thank you for your reply. I had seen those studies but I hadn't picked up on the relative size of the component in the scrotum - as you say, on the ZSI 375 it looks a bit big! My consultant hasn't mentioned anything about removing a testicle but it is something I will definitely clarify before making a decision.

Your comments about the incisions and the post-operative adjustment are also very helpful.

Thanks again.

Will

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