Coping with and treating incontinence following RP

Hello Huffies  A warm welcome to the online Prostrate Community - I am so sorry to see you here and I hope we can be of help.

Yours is something I can't help with myself as I am on the Hormone Therapy route, however by me welcoming you it will "bump" your post back to the top of the forum.

I am sure you will receive plenty of help and advice.

Best wishes - Brian.

Hi I had RP 12 months ago and still incontinent. I have been doing the exercises since Nov 22. The urology dept referred me to a specialist physiotherapist. She gave me different exercises to do. I was hooked up to a computer with an electrode up the bum and done the exercises which showed up on a graph on the computer. I’m doing the exercises ok muscle is fine. I am now on medication none of which has helped. I get very depressed as limited to what I can do. Next step is referral to a surgeon for more surgery to insert a support that is attached to the tail bone and the pubic bone. Ask your consultant to get a referral to a specialist physiotherapist and see what he says. Bye the way I’m 75

Thanks. It always helps to know I’m not alone.  I was referred to a specialist physio but all I got was the Kegel routine . Will ask for another referral.

Hi Huffies. I am 17 months post op. Although it is easy to say, 4 months is far from being a long time in this journey (I am sure many would say the same thing) and I really do not think it is of any benefit to think about further corrective action yet.. It took my body about 6 months to START improving and since then it has been slowly getting better. I consider it is still improving and I have learnt to manage the difficulties to my satisfaction.  Everyone is different of course and some unfortunately  do not improve. It use to get me really down but you try to not let that happen to you. Be patient.

Thanks Static for the info. The physio said it can take up to two years before any improvements. I also have ED

Hi Huffies

i agree with Static, 4 months seems a bit soon to consider alternative solutions to the incontinence. I had RP early Jan. Im 58 and seem to be progressing OK but it is slow and I have some days better than others. I keep doing exercises as advised. I also try to vary between standing or sitting when I do them. I leak most when standing and especially walking so I try and do exercises mainly standing ( usually at the toilet as each squeeze can result in a squirt !)
The info I was given was that whilst many men regain control in c4-6months it can take up to a year for the majority of men to regain control. Even after then some men still require a thin pad just for protection against minor leaks. There are also a small % that will require further treatment but was advised that that is considered after the first 12m
I agree there are times it can be soul destroying but as Static said, be patient…and keep doing the exercises. 
I also looked at some of the real stories on the PCUK site as there are some on there where people have had an RP. 

Best

Alex

Hi Alex and Static

Thanks to you both for your replies and whilst I agree that 4 months is too early be arranging any further surgery I agree with Static about learning "to manage the difficulties to my satisfaction".  In my professional life I always liked to problem solve and work to a plan.  This was not a linear process but one based upon reflection and re-organisation.  I also worked under the premise that if something wasn't working then try something else.  It was with this background that I submitted my initial post.

I am currently marinating in my own wee and the thought of waiting another 8 months before considering next steps fills me with absolute dread.  As I previously said I am routinely undertaking pelvic floor exercises, wearing a combination of pads and occasionally a Pacey Cuff.  I live an active life, going to the gym 5 days a week and working my allotment.  

For my peace of mind I need an attainable goal in both the short and longer term.  Hence my wish to hear of any measures with which members have had personal success and how some (unlucky few) have found the later surgical options.  As my physio said to me, "better to get your name on a waiting list early and then remove it later if necessary than join a list only after 12 months".

My heart goes out to Raaid and I wish him all success.  Please let us know how you get on.

Hello Huffies  I know I can't help and I do feel sorry for you in the situation - however you have just made me laugh out loud at the quote of the month:

Huffies said:

I am currently marinating in my own wee

That's a cracker and I apologise for posting but I need to thank you for brightening up my day..

Kind Regards - Brian.

Hi Huffies 

wow, I hope I’m still as active as you when I’m 71. 

I also referred to the real stories on ProstateCancerUK.https://prostatecanceruk.org/prostate-information-and-support/further-information/real-life-stories/paul-s-story#:~:text=Paul%2C%2064%2C%20had%20surgery%20which,is%20–%20incontinence%20or%20erectile%20dysfunction.

There was Paul’s story on there who was really struggling with the incontinence. His attitude was similar, “adapt and carry on”. He had external catheter for a few months and kept up withe the PV exercises. It might be worth raising this with your consultant. 
Hope you get sorted 

Best

Alex

Part of my 'managing' in the 'early' days was to use an empty coffee jar and very soon afterwards when I realsied success  I invested about a fiver in a proper plastic urine bottle. I used them as I was standing up from sitting, when I arrived at my distination when driving and also at some other times when I was out. I found that a major boost to my mental health. Also a friend said to me ""I wouldn't worry. A lot of men P themselves after they have had 5 or 6 pints"". Not sure how true that is as I hardly drink but made me laugh. Also while researching I realised that incontinence in men is generally just not acknowledged and yet it is very widespread for numerous reasons as age takes it toll. Be assurred, you are not alone in this difficulty.