Incontinence recovery time scale experiences

Yorvik, I echo and empathize with the despondency. I am 4 months post surgery and will go thru 3 or 4 pads on a bad day, and like yourself it is when moving around, being active, bending, kneeling it leaks the most, ( need to keep trying to remember to flex the pelvic floors before bending / kneeling) . I use the "Squeezy" app 3 sessions per day - for slow, quick and sub max exercises. Do you use this app as an aid ? I am slightly fortunate to have had 4 sessions with a continence physiotherapist on adjusting the settings within the app. It is only in last week or so I have had 2 much better days - it was like the tap had got turned off that day- at least it shows it can improve and I hope to have more good days than bad as the next couple of months progress. May that be true for you too.

P.

Edited by member 13 Mar 2022 at 19:22  | Reason: minor typos

Thanks Pawmark

I’m currently getting through 4-6 maxi pull ups or pads depending on activity level. Thanks for the advice of using the Squeezy App - I’ll look at it. Currently I’m using the Keigel App which sequentially increased difficulty using a combination of short 2 sec contractions and long 12 sec ones. It sounds as though a continence physiotherapist would be very helpful  is this something you arranged through your hospital or GP?

Thanks Peter - Good to hear you're making such good progress.

Appreciate the tips about when to do the third set of exercises and lying down in the afternoon.

I'll call the urology nurse at St James' hospital in Leeds where I had the surgery to find out whether they have a continence physiotherapist. Happy to try anything !

Thanks Lyn - As you may have read in my last reply, I was referred by St James in Leeds to the community nursing service incontinence nurse for the York area. She was helpful in so much as advising on fluid intake etc and also prescribing the Conveen sheath system to enable me to get out for decent walks. I discussed this at the 7 week post op review with my consultant in Leeds who was content for me to use the Conveen as long as I persevered with pelvic floor exercises and didn't simply put on a collection bag at the start of each day and rely on this. I've been following his advice and only using the sheath whilst out for a walk. The majority of time I wear pull ups as I find pads just don't cope with the flow.

As to the local provision, it sounds as though you know the area. For patients in the York catchment, urology services are either provided in Malton or Harrogate. I started in Harrogate for investigation but was referred on to Leeds for robotic prostatectomy, hence my thoughts of asking if Leeds had a continence physiotherapy provision. 

Thanks again Peter

I can appreciate how exercising the pelvic floor increases the general tone at rest which ultimately should help with control. The more acute hard squeeze in an attempt to gain temporary control when moving from sitting to standing and then walking to the loo, is clearly a finite length hold and then when relaxed, loss of control resumes. It's hard to know where the correct balance between tensing the pelvic floor with short and long contractions during Kegel exercises and resting, both between each contraction, as well as allowing sufficient recovery time between sets. I started on 5 sets a day but have reduced to 3 sets to increase recovery time.  Many, including me, seem to experience decreasing control as the day goes on which seems to fit with the concept that the pelvic floor muscles provides ongoing support and activity during the day, not just when trying to obtain some semblance of control of flow. You were advised to do some pilates exercises as well as lying flat for 20 mins in the afternoon to enable your pelvic floor to relax and recover which makes sense and certainly worth trying.

Hi Chris

Thank you for sharing your experience. I've no idea what my bladder volume is I'm afraid. I tend to go to the loo far more frequently now in an attempt to reduce the leakage volume during transit. My incontinence nurse advised only going every 1/12-2hrs, to avoid future bladder issues, but whilst that's possible if I remain seated, within a few minutes of standing, moving around or performing general household activities, the fairly constant leakage means there is precious little to void if I then go to the loo.

After your cystoscopy which found a stricture and foreign body, did you require any further treatment and did you later regain continence?

Many thanks

Yorvik

Hope things are stable now for you.

Many thanks

Yorvik

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.

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

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!

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

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.