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Incontinence 1 year on after a radical prostatectomy

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User

Posted 28 May 2018 at 22:34

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 28 May 2018 at 23:27

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

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

User

Posted 29 May 2018 at 07:52

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 19:57

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 22:46

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 09:31

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 19:03

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 21:08

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 22:30

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

User

Posted 20 Oct 2019 at 13:29

Have read through this thread and have learned a lot, but wonder what is best. I had a TURP in 2016 and by 2018 it had grown back and Urologists wanted to do another and I refused and requested my Prostate was removed as it had a "Small Cancer" there. In May 2018 I had my Prostate removed by Da Vinci procedure and after the op I was later told my Cancer was a lot larger than was thought !. After the op I was referred to a Urology Physio as I was leaking badly and she checked that everything was working as it should and referred me back to my Consultant and I was then informed I had stress incontinence which happened a lot after a TURP and Prostate removal operation but nothing could be done until I was free of UTI's. I have now had Fosfmycin for 6 months and have passed checks that I am clear now. I leak a fair amount when walking, lifting and doing other things, use at least 3 pads a day, but can flood the toilet floor and my clothes just removing the pads and sitting down, and getting up again after. Was advised to use the Conveen system which works well when on, but find it slips off due I think to the pressure of my urine when it comes away ending up in wet trousers so much that I will not leave home with it on ( Have tried numerous sizes but no change ). Was told 3 months ago that I was to see another Surgeon for help with stress incontinence but still no appointment, only reading I have done was about AUS and it seemed there is a risk of it failing and going faulty and is this a problem ?. i am 76 years of age and very active keeping Poultry and a small Caravan site and would love to have no worries about embarrassing wet patches and flooding myself walking round Supermarkets.

User

Posted 20 Oct 2019 at 20:27

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 20 Oct 2019 at 20:51

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 20 Oct 2019 at 22:08

Tony & Will,

Thanks for your comments, and yes, feel down at present, not helped by a trapped nerves in my back, probably going back to when I was gored by a bull. When i had previous problems with the Cancer there, I felt there was some urgency and now it seems you have to chase as waiting for Urodynamic test at present.
Coloplast have been really good and am using the standard which is a fair bit longer than the short. My problem is I can urinate very fast and it can blow the pipe off or force the sheath off. Initially had problems with pads not absorbing the flow quick enough and it running down my leg until the Continence nurses came up with a better pad.
Will be really interested to know how you get on Will and hope all goes well.
Tony, Did anyone mention to you when you had your TURP that this would be a complication if your Prostate was removed later, as nothing was said to me, yet it seems to be a well known fact by Surgeons that incontinence is likely to be a problem if this happens. Had I known this I would have requested that my Prostate was removed first as I knew I had Cancer.
David

User

Posted 21 Oct 2019 at 08:25

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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