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Frustrated with incontinence

User
Posted 10 Nov 2017 at 13:12

I had a Da Vinci Robotic prostatectomy on 9/6/17 (Gleason score 3 + 4, but from initial diagnosis of 5% of one of 12 cores, within 10 months the 5% had become a 10%, there was a new 10% in another core and a 35% in a third core). Procedure went well; surgeon was confident he had spared pertinent nerves, lymph nodes were clear, margins were clear. I purchased a kitchen scale which measures to nearest gram and have closely followed leakage. When sitting or sleeping, there is negligible leakage, but just moving around doing various chores I leak anywhere from 200 to 400+ gms/day. I perceive no strain doing these chores (I'm very active, running and biking a lot), but any standing movement seems to cause spurts of urine. I'm currently using 5-6 high capacity pads/day. After seeing two weeks of improvement, yesterday (11/9/17, over 9 weeks out) I had the worst day since the catheter came out. Is this a common experience? Should I see more consistent improvement? I Kegel at every opportunity, but as soon as I relax from a sanding Kegel I spurt (I don't think my bladder ever fully empties). 

User
Posted 11 Nov 2017 at 09:57

I don't know if this will help or not but I remember that when I discussed treatments I was told very clearly that if I experienced incontinence then it could take 12 -18 months to get back to somewhere near normal but to be aware that some men never recover. Having been told this I accepted that the result could be anything from immediate dryness to no recover. I had problems with incontinence as my profile will show you but I did my PFE's three times a day but mainly I just got on with my life using pads or the Conveen sheaths to allow me to do this. Yes it was unpleasant, uncomfortable and a nuisance but I didn't allow it to become my main waking thought. I was walking, driving, riding the motorbike, going on holiday, gardening and doing everything that I did previously and bit by bit things got better.

I still wear a small pad every day because having also gone through salvage RT, a hernia operation and now HT I occasionally have a very small leak but not every day. I find that the small pad is there just to save any embarrassment and to be truthful I am no longer aware of it.

Any regrets about all the treatment? None whatsoever. It has taken 2 years to get my first PSA reading of undetectable and life is good.

It may be that if you can be a bit kinder to yourself and accept that it could take time to regain control but that it doesn't stop you living your life while this is happening then hopefully by a process of two steps forward and one back you will get there.

I find that time is too precious to spend it stressing about the cancer but I accept that this is purely my take it on it and there are good reasons why many others feel unable to do this.

I wish you all the best going forward and hope that things will improve over time.

Kind regards,

Kevan

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User
Posted 10 Nov 2017 at 16:11

Hello Vinceph and welcome.
I'm sure that others in your position will be along to advise but in the meantime I offer my thoughts.

I know June seems as if it is a long time ago but you have had major surgery and everything inside is still repairing itself and will be oversensitive.
You are also stressing about it so are conscious of it the whole time. (Understandably)

I'm sure you'll get advise so please hang on until somebody who has been/is going through the same comes along

Edited by member 10 Nov 2017 at 18:04  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 10 Nov 2017 at 22:30

I am with you in terms of - what and why? I am now 10 months post RARP and I have so many unanswered questions. I plan to post here my experience on 'continence' / 'incontinence' as I get near 1 year on. That is a long story but I have formed a view on a few things . . . 1. The kegel or whatever name exercises do NOTHING. 2. The end result in terms of what is possible is down to what was cut out / cut through. 3. What is at day 14 will be better at day 114 but not much better and will be better because you learn how your body does what it does rather than your control mechanisms get stronger. That's not a good story but that's my view / experience.

User
Posted 11 Nov 2017 at 00:00

90% of men will be down to one pad or less by 12 months post-op so as frustrating as it may be, try to cut yourself a bit of slack. I wonder if you are doing too much too soon in terms of physical exertion? You certainly shouldn't be lifting or cycling or anything like that.

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

User
Posted 11 Nov 2017 at 09:57

I don't know if this will help or not but I remember that when I discussed treatments I was told very clearly that if I experienced incontinence then it could take 12 -18 months to get back to somewhere near normal but to be aware that some men never recover. Having been told this I accepted that the result could be anything from immediate dryness to no recover. I had problems with incontinence as my profile will show you but I did my PFE's three times a day but mainly I just got on with my life using pads or the Conveen sheaths to allow me to do this. Yes it was unpleasant, uncomfortable and a nuisance but I didn't allow it to become my main waking thought. I was walking, driving, riding the motorbike, going on holiday, gardening and doing everything that I did previously and bit by bit things got better.

I still wear a small pad every day because having also gone through salvage RT, a hernia operation and now HT I occasionally have a very small leak but not every day. I find that the small pad is there just to save any embarrassment and to be truthful I am no longer aware of it.

Any regrets about all the treatment? None whatsoever. It has taken 2 years to get my first PSA reading of undetectable and life is good.

It may be that if you can be a bit kinder to yourself and accept that it could take time to regain control but that it doesn't stop you living your life while this is happening then hopefully by a process of two steps forward and one back you will get there.

I find that time is too precious to spend it stressing about the cancer but I accept that this is purely my take it on it and there are good reasons why many others feel unable to do this.

I wish you all the best going forward and hope that things will improve over time.

Kind regards,

Kevan

User
Posted 12 Nov 2017 at 13:01

Hi Vinceph

I try to keep out of these threads for a while until I see which way they are running because I don't want my experience (see bio.) to be interpreted as the norm, or even likely. Statistics for regaining continence are firmly on your side, the imponderable is "when". Perhaps an additional issue is that the men who are effectively fully continent, and who have unmeasurable psa may be tempted to drift away from the message board so their views and experience will not be seen.

However, EVEN IF you do have ongoing problems and come to the conclusion that you can't stand it any longer, there are all sorts of strategies that can get you to, say 95% of normal life (believe me, I've tried most of them!). I know this is trite, and difficult to follow advice, but try not to let incontinence get the better of you mentally. I did, and the dark place I went to was not pleasant. Just grasp it firmly (the incontinence I mean...) and say "Sod you, you're not going to win!".

Edited by member 12 Nov 2017 at 13:03  | Reason: Not specified

Tony

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

User
Posted 13 Nov 2017 at 11:26
I also had surgery in april this year and weighed my pads on a kitchen scale in nappy liners. As a scientist i treated the results as a research project. Adding to the chart doing any exertions, weather such as wind etc. But importantly the number of steps walked. As i average 10k steps i adjusted the leakage mathematically to 10k steps. Then this gives a true target to aim for. You will get setbacks however. The other aspect was the kegals and i use an app on the phone to accurately measure the exercise done per day. For me if i overdo it my muscles tier and leakege became greater. For me the optimum times were twice a day and slowly increase the level. I know its a long process, and my problem is ED at the moment.
User
Posted 15 Nov 2017 at 21:13

Hi,

Here is something I picked up and put on the website I did about my treatment:

 

Normal Incontinence Progress

A piece on a website said at first you're dry in bed and deteriorate through the day.  Over time the deterioration slows so you might be dry in the morning but wet in the afternoon and then dry all day, or at least relatively dry.  Most say 3 - 6 months for dry, but not everyone.

 

In your note you say you leak over 400gms on a bad day.  At 1grm/cc that is around three quarters of a pint.   Quite a lot.    I used 2 pads in the early days if I went on a long walk but if I stayed in leakage would be quite small.   

For me, monitoring was best done by the amount of time it took to leak each week and the number of pads.  For example I was dry at night and started leaking later and later each day.  If I did something physical it would come on faster.  If I went on a big walk I might need a spare pad.  I hardly did any pelvix exercising. Sometimes I'd do very little in the hope it let it get better.

Up to recently I'd leak if I bent down and there was a time when it happened if I coughed or laughed.  It was 5months before I stopped wearing pads although I wasn't so bad quite a while before.  I'm really good now but have to be careful after finishing that it's all gone.

You might be overdoing it or it might need some special coaching or measures.  Keep us informed.  

Regards
Peter

User
Posted 16 Nov 2017 at 11:01

I had my Prostrate removed in April 2015 by Da Vinci Robot, 5 days in hospital, about 7 or 8 days with a catheter in, two nights of weeing myself in bed whilst asleep and a few little leaks. In 2017 if I am to leak its more than likely when I sneeze but I have learned how to manage it by bending over then sneezing, not to stand upright!

When I first came out of hospital with the catheter in that was the worst period. From day 2 of being discharged I set myself the task of walking around my local wood, about 2 miles, each day. I continued when the catheter came out, day after day, practicing 'grip' excises like crazy. I almost was in despair, always had to stop for a wee or two and then suddenly on one day in particular, I walked around the circuit and did not have to wee at all. For me a fantastic moment and since then, except for the odd sneeze, have never had a problem.

The only problem I experienced was in July 2015. My hobby is long distance hiking and camping and I decided I was now back to normal so started to hike the GR10 route in France across the full length of the Pyrenees from the Atlantic to the Med. On day 17 I decided to spend one night in a hotel (horrible day, I was wet, cold and miserable) and when I walked into the shower room, with a full length mirror in front of me, I suddenly realised I now had a hernia! I quickly came to the conclusion that I wasn't as well as I thought I was. I had to walk on for another 3 days and whilst camped at a small site I met a young French woman who spoke good English. Eventually I told her that I was experiencing this problem (I was ready to give up and go back to the UK) but she phoned around and found a medical warehouse for me, 60km north from the site. The following day I hitchhiked there, bought a truss, put it on, hitchhiked back to my tent and decided to carry on with my hike.

When I returned to the UK I saw my surgeon within two weeks and had my hearnia repaired 10 days later. No problems at all since.

 
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