Incontinence recovery time scale experiences

User

Posted 16 Mar 2022 at 11:53

Thanks Peter - I'm sure you're right about the rest between squeezes. The Kegel app I indicates both duration of squeezes and rests in-between. Although I started on x5 sets a day, I changed to x3 sets to try not to over work the muscles.

User

Posted 18 Mar 2022 at 09:11

Hi all

I'm just one week removed from having had surgery and got my cathatar out the other day then reality hit absolutely no control whatsoever. I know I'm just starting my journey now but physiologically don't think I was prepared for how much this is going to restrict my life for now.

User

Posted 18 Mar 2022 at 10:10

I'm sure you speak for the majority. Many, including me, focussed on the importance of getting the cancer cut out, accepting the risk of incontinence and ED but not necessarily appreciating how difficult it is to manage. For the lucky ones, continence returns quite quickly, others seem to have very variable responses.

I hope you start to get into a routine to cope but it is never the less a very tough shout.

User

Posted 18 Mar 2022 at 10:27

Thanks yorvik your right the cancer has been cut out and for that I should count myself lucky as other people don't have that option. Just need to find a new way to live with it although won't be easy.

User

Posted 20 Mar 2022 at 22:21

I think the bottom line is different, and what matters is your outcome. There are some on this forum who are magically free of incontinence problems after a couple of days, and some who really struggle and may ultimately need artificial sphincters fitting.

I am somewhere in between. Incontinence was a struggle for several months - though to be fair I tried to do everything I would have done anyway - but started to improve between 4 to 6 months. By about 8 months I ended up where I am now, I need to put a pad in my knickers every day but some days it stays pretty dry, others it gets fairly full. There is no way of telling in advance!

User

Posted 01 Apr 2022 at 07:44

Hello all

Just wish to post (this is my first) as a newbie to the forum to say I am really grateful for the stories and shared experiences. I’m 50 and 3 weeks post RARP and am finding the incontinence not just frustrating but emotionally draining. Despondency is a good word. I know it is early days but I thought I would breeze through it. The reality is different.

I had a bad day yesterday hence the need to seek some support - an embarrassing band demeaning pubic wetting.

Thank you for sharing.It helps

User

Posted 01 Apr 2022 at 09:18

Hello Hatters,

I concur, despondency, draining, and limiting in one's life as a result of leaking. even to the point that when I go out I carry a small rucksack of essentials / spare clothes in the event of excessive leakage. I even got to the point of calling the PCUK nurses, number above, just for reassurance and advice.

3 weeks, is early days - rest, gentle exercise, sip water thru the day, consider cutting out caffeine and alcohol.

May today be a better day, I always hope it will be for me.

User

Posted 01 Apr 2022 at 09:35

Hi Hatter, Yes it is definitely a useful website you get a lot of diverse experiences and views. Three weeks is very early in the recovery so things have every chance of getting better.

If you have many questions and experience s to report, then start a new thread (it can be a bit awkward on this website, I write my posts in Word and copy and paste to website as some times it crashes). The advantage of having your own thread is it groups everything together, so it is a bit like keeping a diary you can refer back to.

Good luck.

Dave

User

Posted 01 Apr 2022 at 10:02

Hi Hatter

I'm in exact same position as you I'm 49 and also 3 weeks post op and wrongly thought my age would lessen the incontinence effects but alas I was so wrong. I'm doing the pelvic floor exercises religiously now so 🤞.

User

Posted 16 Apr 2022 at 22:28

It has certainly been non linear in my case. I'm now 3 months post RALP and the line would be flat for the first two and a half months at least after initial slight improvement. The line would go down as well sometimes after having some good days with minimal leakage suddenly back down again to frequent leakage. I finally succumbed to Covid a few weeks ago and found it got much worse during that which I suppose is a general weakness of the body and all muscles. I'm still not quite ready to discard the pads which are the vivactive ones allowing me to do all normal activities again. If the UI incontinence didn't improve from now which I'm sure it will I'm still ahead as I had my first post op PSA test this week which was 0.01 so well worth going through the whole process.

User

Posted 27 May 2022 at 13:05

I had my catheter out today and essentially have zero control. I would like to try and hold it in for a while and have a decent long pee, but I just leak constantly. I am not too worried yet as it's day 1. I am using the squeeze app and it is set to 6 times a day. From what I've read on this thread I'll adjust it to 3 times a day

User

Posted 27 May 2022 at 13:31

I was the same on Day 1 and for a few days after that. Gradually things improve and then seemed to plateau or even go back occasionally. Leaks then gradually reduce without you even realising it. Now 4 months on from the op only a few very minor leaks usually with a full bladder. Would highly recommend Vivactive pads Active Fit allowing normal activities fairly soon. Am now back playing cricket, golf and tennis with no leaking on the field of play.

User

Posted 27 May 2022 at 18:04

An update guys. I am now 6 and a half months post op and 99% dry. Actually. 100% for the last two days. Played tennis this morning for two hours and no leak at all. I prefer Tena pads, level 1, because they are thin and have a decent spread, but each to his own, they all do a job. Once I have exhausted my current stock, I will switch to protective shields, mainly for confidence and the odd spot that will surely happen. My point is that I was, like you, distressed and despondent early on, but now I can say that there really is a light at the end of the tunnel for those of us who have not been blessed with early continence.

Best wishes, Peter

User

Posted 27 May 2022 at 21:39

Anthony, You will probably find continence improves fairly quickly in the sitting and lying positions. Standing and being active on your feet takes a little longer to sort out. My progress was frustratingly slow at first but now just over three months post op, I've had a rapid improvement which is still progressing. I did end up seeing a pelvic floor physio which for me proved to be a big help. He ultrasound scanned my squeezes. It indicated the squeezes were strong but not concentrated in the optimum area. I was focussing effort in the middle of the pelvic muscle whereas the focus needs to be on the front where the urethra passes through the pelvic muscle. If you focus on "nuts to guts" you can't go far wrong. Good luck with the recovery. Chris

User

Posted 28 May 2022 at 11:32

Some advise please. When you feel leakage, what do you do? Do you

1. let it take it’s course?

2. squeeze to stop it?

3. squeeze to stop it and run to the loo, only to pass a little dribble?

I’ve been doing 3, but the upshot is I don’t have a proper pee , just tons of dribbles

My first night post catheter was dry, I had to get up twice to pee and they were decent efforts and the stream was like a jet wash, something I haven’t seen in years!

User

Posted 28 May 2022 at 11:49

Based on my experience, Anthony.

If you can feel the leak, that's good. In the early days I didn't know what the Old Chap was doing. When I did start to feel a leak, I did squeeze to try and stop it and then go to the loo. Sometimes there was nothing there, either because it had all gone into my pad, or the feeling was a false alarm. Even now, I sometimes feel I have been too late to stop a leak, but my pad is dry. Brain playing games with me.

I was concerned that running to the loo too frequently could become a bad habit, but the PCUK nurse advised that in the early stages after catheter removal it was far too soon to worry about bladder training.

Peter

User

Posted 30 May 2022 at 09:47

6 month post op update

Leakage improving but still require 1-3 Tena level 3 pads per day. I can manage to walk for 2 hours before pad saturated so have stopped using the Conveen sheath system.

Lifting/vigorous exercise such as digging results in zero control which also deteriorated greatly as the day goes on.

Still doing Keigel exercises x3 sets a day.
Given the subjective nature of things, I started to weigh each pad post use to track progress.

Out of interest, the claimed volume absorptive capacity of pads etc is completely inaccurate in my experience.

Hope this helps

Yorvik

User

Posted 30 May 2022 at 10:38

Yorvik, thanks for that information. It has confirmed my suspicions about the absorption capacity of Tena pads. I guess the claims they make must be based on laboratory conditions and not under typical wearing conditions. Pleased to hear your leakage is still improving albeit slowly. Chris

User

Posted 04 Jun 2022 at 16:44

Hi all, I'm new here and most of what has been described in this thread has been very, very helpful. I'm experiencing good and bad days three weeks after removing my catheter. In particular, the dribbles, the uncertaintly whether to catch it and clamp up, and going to the bathroom constantly whenever I feel some urine escape to just dribble a few drops. I've had a couple of very good volume occasions, usually after a good night's sleep, but during the day it's rare. Like most here, I'm fine sitting and I can go on long walks with little problem, but getting up from sitting I just can't get the right level of control. And then I often feel as if I have penile cramps, likely because I've been trying to consciously hold it in. The other concern I have is that I often have a little burning at the tip of the penis, usually when I've dribbled or when the pad is reasonably full. Is that normal, or is it an infection? I get frustrated and wonder whether my mind is playing tricks on me... which I'm sure at times it does as I spend too much time thinking about it, which really annoys me. I'm in good spirits otherwise. Any further advice is appreciated.

User

Posted 05 Jun 2022 at 06:41

Ameno

Always worth getting any infection concerns checked out.

Make sure you are drinking plenty but avoid caffeine and alcohol they irritate and reduce control. I found it helpful to measure my output, also has the benefit you can check it's clear and as white as possible so you know you are drinking enough.

Leaking on exertion and during orgasm took a long time to clear up, still have the occasional mishap after 7 years but nothing that requires anything more than regular pants!

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