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 20 Oct 2019 at 21:27

Hi David

I think from the tone of your post that you are feeling pretty down about the level of incontinence. What doesn't make it any better is the number of men who are absolutely dry after RP and are not backward in telling about it, and on the other side, reading entries on this forum from men and their families who are going through hell with radiotherapy and chemotherapy, so why are we making a fuss about a bit of incontinence? On top of that we are told (including by the professionals) that PFEs are the answer when in some cases they just don't work.......it isn't easy. Personally I found heavy incontinence extremely difficult to live with and have tried many different possible solutions.

My diary of experiences is here : https://community.prostatecanceruk.org/posts/t11152-Artificial-Sphincter--AUS----Diary-of-experiences My AUS was installed in mid 2015 and is still working as well as when it was first activated. It isn't perfect, but the boost it has given to my confidence is significant. No more wet trousers, no more having to travel everywhere with a rescue kit and mounds of pads.

Any questions or fears, please don't hesitate to get in touch, either through this message thread or by personal message.

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 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 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 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 20 Oct 2019 at 21:51

Hi David,

Following Tony's comments in August (see above) I decided to opt for the AMS 800. This was fitted 2 weeks ago so it won't be activated for another 4 weeks. Once it is I'll let you know how it goes.

In the meantime I will continue to use the Conceen system which I found to be pretty reliable once I got the correct size sheath. Are you aware that as well as different diameters they do 2 lengths, short and standard? I found this out when talking to Coloplast to request samples. I was told they send the short one unless you ask for the standard which seems odd - I would have thought they would send the standard one as standard, but apparently not. The only times I have had a problem since getting the size sorted out have been "user error", twice with the tube snagging and pulling off the bag and once with allowing the bag to get too full (there is a point at which the pressure from the bladder has to go somewhere and it will eventually push out around the sheath).

I hope this is of some help

Will

User

Posted 21 Oct 2019 at 09:25

David - No, cancer did not come into the discussion. I was being treated for BPH because my PSA at the time was relatively low ( but only as a one-off measurement, I had no historical measurements to establish a trend ). Also I did not have a biopsy before the TURP, it was the residue from the TURP that discovered the cancer, and of course, then it was too late and I had to move pretty quickly. I suspect that the fairly short period between TURP and LRP was one of the contributory factors.

In hindsight would I have chosen a different route? Probably not other than giving in to an AUS rather earlier.

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 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

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.

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,

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