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User
Posted 19 Nov 2016 at 13:48

Hi there, well i discovered this site and rather pleased i have. After having Robotic Prostatectomy performed last week and a week later having the catheter removed some three days ago. I am now struggling with incontinence and wonder just how long this is all going to last.


Being told i have prostate cancer knocked me sideways. I was then armed with leaflets a video and various nurses/doctors phone numbers where i could leave a message to enquire about any concerns. Then advised that me Gleeson score was 3.4 and that because of this my treatment options were reduced to only two. Feeling that three months taking hormone tablets and then going for radiotherapy treatment would make me fear for three months with no ability to concentrate on anything other than my illness i opted for the Robotic Prostatectomy. I understood all the side effects and what to expect post surgery. But the incontinence is getting me down. Since having the catheter removed only three days ago i seem to have no control over when my bladder wishes to empty itself or any warning. Yes i am doing the pelvic floor exercises, even more so before i leave the toilet.  Only to discover as soon as i have sat down again in an armchair i feel the need to return to the toilet. This part of having had prostate cancer i find so debilitating as i do not wish to leave the house whilst i am in this condition. Does it ever let up?

User
Posted 20 Nov 2016 at 12:14
L

Copied today from this site "For example, if you’ve had surgery and work in an office, you could be back at work within two weeks. But if you need to do heavy lifting or travel a lot, it could be four to six weeks. "

The brochure from our hospital quoted 2-6 weeks before returning to work.

I did say it was optimistic and this refers to robotic not open surgery. I could have gone back after three weeks but the Monday was a bank holiday so I took the extra week.

Thanks Chris

User
Posted 20 Nov 2016 at 19:35
Originally Posted by: Online Community Member
L

Copied today from this site "For example, if you’ve had surgery and work in an office, you could be back at work within two weeks. But if you need to do heavy lifting or travel a lot, it could be four to six weeks. "

The brochure from our hospital quoted 2-6 weeks before returning to work.

I did say it was optimistic and this refers to robotic not open surgery. I could have gone back after three weeks but the Monday was a bank holiday so I took the extra week.

Thanks Chris



My hospital says exactly the same, Chris, though it's obviously a generalisation.

We're all different and for sure there can be too much, as well as too little time away from normal, everyday life. Some people's occupations don't draw on physical reserves any more than sitting at home would, whilst their psychological wellbeing (a big part of the healing process) is helped by getting back into a productive routine.

Horses for courses.
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User
Posted 19 Nov 2016 at 14:45
Hi,

Welcome to our site.

It is very early days yet. I'm sure many members will soon be along with good advice. Reading some of people's threads will provide a good insight to their experiences too.

Best of Luck with your recovery.

Steve
User
Posted 19 Nov 2016 at 15:18

Many thanks for your response Steve. Actually selfish as it sounds, it is  good to know that there are people who understand what despair i am going through and yes i am an impatient man.

User
Posted 19 Nov 2016 at 16:38
Hello Elvander
Those of us who have gone through the same process will understand all too clearly your fears about being unable to focus on anything but your illness in those early months. The detached advice is always to take your time but of course it's detached advice. When it's personal it feels like time is something you don't have.

As for the incontience, time is your friend. Your body has a lot of (re) learning to do and adapting to new arrangements takes a while, for urinary and other systems.
User
Posted 19 Nov 2016 at 19:33

welcome to our group ,You are expecting to much to early, I found long walks helped so exercise as well as PFE , It took me a few months to regain control .Andy

User
Posted 19 Nov 2016 at 20:51
Hello, I have gone through the similar experience you have 12 months ago, it will get better, keep doing your PFE , as suggested go for a walk to get your strength back. You should have been given incontinence pads to save any embarrassment whilst outside the comfort of your home.
It took me five weeks to get back control to my bladder and even today I am still doing my PFE, because of the odd laugh, breaking wind or sneezing I still leak, not a lot to concern myself with though.
Keep focused and you will conquer the incontinence.
Best of Luck
James
User
Posted 20 Nov 2016 at 03:44

Thank you for the kind replies.


I know i am an impatient man and am expecting too much of myself right now. But the crazy part about all this is. Now i am showing the signs of an enlarged prostate as in erratic urination. Before having the prostatectomy my only symptom was urinating approx every two hours. Now its every 15 minutes or less sometimes with little or intermittent flow. Quite often when i am unprepared. Resulting in me scurrying to the toilet.


I am keen no eager to get back to work. But want to keep my dignity in doing so. My employer has been quite understanding and has not placed any pressure upon me.  They appreciate  obviously i am at home recovering from an operation.  But to delay my return as at present i am incontinent may be something the HR dept will not sympathise with. 


Whilst scurrying to the toilet and clutching my groin in the vain hope of preventing another accident i have cursed myself and thought, why did i go ahead with this procedure as the side effects are worse than the immediate symptoms i had. Why did i note bury my head in the sand when told by the doctors what options lay ahead for me. I did actually ask the doctors, "how about i just walk out the door and we all forget i was ever in here". Their response was you will be back within five years and showing cancer in more than just your prostate. So with their words ringing in my ears i continue to scurry and dribble enroute. Curse and moan and think why me, while i am trying to aim amid wrestling through a pad.


Yes i do my pelvic floor exercises, change another pad moan and curse to myself, but i am charged with optimism after reading from this site that i am not the only person that this is all a struggle for and that one day i will be able to go out and enjoy my life with my family and friends again. I want to see my grandsons grow up and have a beer with them and hold it. They are just toddlers now so i have a lot of time to practice those pelvic floors.


Thank you for reading my concerns, yes i know compared to some people, mine are very minor but right now they are gigantic to me.

User
Posted 20 Nov 2016 at 07:08
Hi Elvandar,

I think you will find that whatever treatment you went through would have caused changes in your life which you have to learn to live with, hopefully, these changes will only be for a limited time.

Try not to put pressure on yourself to do things too soon. You have to give yourself time to recover. Too many people try to do much too soon and find themselves delaying their recovery.

I can only speak from my experience of reading many posts on this site and the experiences of our local support group. Unfortunately I only had one treatment option offered to me: Hormone therapy with Radiotherapy. That hasn't been easy to deal with too. I had bowel urgency that was so bad that I would only have less than a minute's notice. Fortunately, that went away after a couple of weeks but seems to be returning again in recent weeks. I can assure you that I would much rather have suffered pee incontinence for a while. I also had rectal bleeding which continued for a while which also required me to use pads too but it will be all worthwhile if it gave me a chance of life.

If you read people's profiles (click on the avatar or name at the top of posts) I'm sure it will help.

So relax, enjoy the rest and look forward to a good future.

Steve

Edited by member 20 Nov 2016 at 07:24  | Reason: Not specified

User
Posted 20 Nov 2016 at 09:27
Elvandar

As all ready said it is early days, some guys are dry from day one I was originally almost dry from day four but subsequent procedures left me incontinent on three or four occasions,so I know how you feel.

You talk about returning to work the info on this site says two weeks if you have a non manual job, four to six weeks for a manual job. I think most of us agree that is being optimistic. I returned after four weeks be was confined to the office for the first two weeks. Your employer has certain obligations "by law" to help your situation, you are classed as disabled at the moment under the equality act. Most of us would not like to start quoting regulations at the boss but it is there as a lever. I told my boss I would be off between two and six weeks because that was the info I was given at the time and he was fine with that.

If you are urinating frequently but small amounts your pads should cope with the amount you are leaking. I put a pad in my snug briefs stood in the shower and let the bladder empty to see how well it coped, it gave me the confidence to get out and about knowing the pad would easily asborb my leak. At times I have dropped 170 ml in one go and it has all been contained. I would put some toilet paper in a nappy liner and position that between the penis and the pad to soak up a small leak, that way you can change the toilet paper and you are not walking round in a soiled pad. The tenna2 pads do have good odour control.

If you have not already done so download the toolkit, there is some useful info on dealing with incontinence and employment issues.

Are you drinking enough and drinking the right sort of fluids. I was recently told drink two to three litres of water on top of any other drinks. I was also told to avoid caffeine fizzy drinks etc, and to avoid drinking caffeine after 3 PM to aid a good night's sleep.

I had the same doubts about having treatment as you, but two and half years on despite my complications and not being out of the woods yet I am glad I gave myself the chance of a cure.

All the best for your recovery it is early days.

Thanks Chris
User
Posted 20 Nov 2016 at 11:19
Hi Elvandar
Excellent advice from everyone but your comment that your problem is gigantic to you resonates with me.
I found that what appeared to be causing me a problem was that the pressure from the pads themselves (and believe me I tried many different types) was making me feel that I wanted to urinate all the time. In desperation I phoned Coloplast to talk about the Conveen sheath/bag system.Basically like the catheter but no tube inserted but it uses a special sheath. The only difference between this and the pads is that the urine flows into a leg bag and therefore is easy to dispose of via the drain tap when it is convenient. My own experience of this was that I was comfortable and it allowed me to get on with my life. Once things started to get better and a small Tena would deal with coughs and sneezes then I ditched the Conveen. Plenty of blokes use this system for attending pop concerts where you could be stood for hours with no access to a toilet. This is only my experience but it got my confidence and life back in no time. Just a thought. Others think that for some reason it makes you lazy but I cannot agree as all that you are changing is where the urine goes when it leaks and has nothing to do with how you work to prevent it leaking in the first place.

Kind regards

Kevan
User
Posted 20 Nov 2016 at 11:44

You should not be worrying about what work thinks right now. In my opinion, whatever leaflet suggests men might be back at work in 4 weeks is prepostorous and if that really is a PCUK leaflet they need to look at themselves. The brochure from our hospital says 8 - 12 weeks. John was given a 12 week sick note while he was still in there - as it happened, his insurers wouldn't cover him to drive until 12 weeks after the op so he worked from home from about 10 weeks.

Your urinary sphincter is still settling into wherever it has been repositioned and the stitches will still be healing - our urologist described the urethra as like a seive after RP and all those holes have to mend. Your brain also needs to relearn how to control the sphincter and associated muscles - similar to the process you went through as a toddler, learning to recognise the signals your bladder is sending. I forget how many thousands of calories your body is using each day to heal from the surgery but that makes you tired which affects your brain's ability to relearn the bladder stuff. The better the quality of your rest, the more chance you have of recovering quickly.

Edited by member 20 Nov 2016 at 11:44  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Nov 2016 at 12:14
L

Copied today from this site "For example, if you’ve had surgery and work in an office, you could be back at work within two weeks. But if you need to do heavy lifting or travel a lot, it could be four to six weeks. "

The brochure from our hospital quoted 2-6 weeks before returning to work.

I did say it was optimistic and this refers to robotic not open surgery. I could have gone back after three weeks but the Monday was a bank holiday so I took the extra week.

Thanks Chris

User
Posted 20 Nov 2016 at 13:12

Shocking - I am really concerned at the number of new members we have had recently who are genuinely distressed by what they perceive as their 'slow' recovery and the ridiculous lack of awareness some men have of what life will be like post-op. Much of the blame seems to me to fall on surgeons who gloss over the potential side effects. Now it seems PCUK is contributing to this :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Nov 2016 at 16:52

Hi,


I had the post radical prostatectomy experience starting September 2014. My consultant had warned me that full continence could take up to 12 months so I considered it an achievement to be dry in 6. If you focus on being dry eventually and take all the good advice about pads and exercising and try to relax, you may be surprised and do it even quicker! Thereafter, I have only leaked to any measurable extent on sneezing/coughing and even that is now much better, but you will wise to keep some pads in the house, once dry, just in case you get a bad chest cold. My advice is take each day as it comes. Good luck.


Dave

User
Posted 20 Nov 2016 at 19:35
Originally Posted by: Online Community Member
L

Copied today from this site "For example, if you’ve had surgery and work in an office, you could be back at work within two weeks. But if you need to do heavy lifting or travel a lot, it could be four to six weeks. "

The brochure from our hospital quoted 2-6 weeks before returning to work.

I did say it was optimistic and this refers to robotic not open surgery. I could have gone back after three weeks but the Monday was a bank holiday so I took the extra week.

Thanks Chris



My hospital says exactly the same, Chris, though it's obviously a generalisation.

We're all different and for sure there can be too much, as well as too little time away from normal, everyday life. Some people's occupations don't draw on physical reserves any more than sitting at home would, whilst their psychological wellbeing (a big part of the healing process) is helped by getting back into a productive routine.

Horses for courses.
User
Posted 21 Nov 2016 at 16:15

Hi,
I had the robotic prostatectomy on 29th sep, I had the catheter in for 3 weeks, when the catheter came out I could not get used to the incontinence, I expected it but no one tell you what it is like, it is terrible peeing all the time I kept saying to my wife I wish I had not had the OP, it is 4 weeks since I had the catheter out and I am starting to see small improvements but it does take time and a lot of patience, there is an APP which is free if you have an Android smart phone called prostate aerobics it is very good, also make sure you do the exercises properly otherwise they will not work, I had my post OP consultation today and got the all clear PSA undetectable so I now know I did the right thing and had the OP, please don't despair it will get better, but one step at a time, I hope this helps,

best wishes

Paul

User
Posted 21 Nov 2016 at 16:48
Hi,

18 months since my op but I can still vividly remember the period just after the catheter removal. I thought I would be in pads for life. Initially every time I stood up, coughed or walked about I had no control whatsoever. However things slowly got better and now it is not a problem at all. I did see the local incontinence team who gave some advice on avoiding bladder irritants but as two of these were tea and beer I only gave them a cursory avoidance.
The exercises did help and I do still do them when I remember.
Good luck.

Paul

Edited by member 22 Nov 2016 at 12:03  | Reason: Not specified

THE CHILD HAS GROWN, THE DREAM HAS GONE
 
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