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Incontinence recovery time scale experiences

User
Posted 05 Jun 2022 at 10:04

Hi Ameno, the fact that you are able to go for long walks with out problem shows you are exercising a good degree of control. It's taken me a while to control that to an occasional dribble level. You are only three weeks post catheter and probably doing better than average. Getting up and lifting still catch me by surprise and the instinct is to clamp up, although probably too late to stifle the dribble. It gradually becomes second nature to squeeze in these situations before maneuvering and it should start to do the trick, if you are squeezing correctly.

Chris

User
Posted 05 Jun 2022 at 10:20

Hi Ameno. Sounds like you are progressing well. I am just over a week post catheter and going for a short walk causes a full pad. I know I’m leaking but can’t stop it. It’s odd because I can stop my urine flow when going to the toilet, maybe because it’s a stream vs a dribble.

I sometimes has a burning at the tip of the penis but it’s not consistent. I also occasionally get a pain mid penis which is usually followed by passing a blot clot and bloody wee. I was assured by the nurse that this is normal and just scans and other detritus exiting the body.

Hope you and all of us continue to progress 

User
Posted 05 Jun 2022 at 17:32

Hi Everybody. Thank you all for your advice.

I have passed it onto OH as he is 5 days past catheter removal and despondent about leaks during the day. He is dry at night but needs 2 to 3 pads a day and feeling the leaks upsets him. He saw a physio in spring and has been doing the exercises since then and expected to be dry almost immediately. Coffee is now off the menu to his regret but if that helps.

Any other advice is gratefully received.

User
Posted 05 Jun 2022 at 18:55

I am a couple of weeks ahead of you so understand the frustration is real.  Couple of suggestions....

I found going back to the pelvic floor physio was useful to give me reassurance that I was on the right track and doing the kegels properly.  I have a bi-weekly appointment for the moment.

I find it mentally useful to compare progress week over week.  I am still leaking (a lot) during the day but way better than last week which is reassuring.  Very hard to assess progress day by day.

Edited by member 05 Jun 2022 at 18:56  | Reason: Not specified

User
Posted 07 Jun 2022 at 09:10

Thanks for that - yes, I think I'll go to my kegels coach this week and get "refreshed" on technique...it's bizarre how I had two really outstanding control days on Saturday and Sunday and then on Monday it was as if I had an open tap --- a constant steady drip and, at times, a stream that I couldn't stop... better now but amazed as how you can think you're figuring it out and actually go back in time. I was trying to find reasons --- although apparently there no necessary reason although I was wearing slightly tighter pants than the previous days. I like the idea of comparing week to week and there are certainly some areas where I do have better control. Thanks again.

User
Posted 07 Jun 2022 at 09:13

Great, that's helpful. I do get what feel like "cramps" towards the end of the day --- sometimes I feel that it's overtraining although I'm not doing as much as my kegels coach would like me to do {3 sets vs. 10] and I think that the burning is very specific - if I leak and its very hot here so I think it's just very acidic and the tip is very sensitive.

User
Posted 09 Jun 2022 at 08:41
One more question. Do any of you have experience with incontinece clamps, such as Dribblestop and the like? I'm tryng to understand whether they actually help or hinder recovery? Do they slow down the body's ability to regain control of continence? And, are they effective? I'm thinking of using them when I have to travel [I have a long haul flight coming up and am concerned about the stress and the pad changes] but I don't want to do anything that sets me back in terms of progress... any comments or suggestions please?
User
Posted 10 Jun 2022 at 12:19

Hi all, just thought I’d update on my recovery. I am almost 4 weeks post RARP and 2 week post catheter removal. I have always been dry at night, but did wear padded underwear at night, just in case. I stopped doing that 4 nights ago. I usually wake up once a night for a pee.

The daytime is improving. I only leak a little now when I get up from a chair and for the past 2 days have left the pads off from early afternoon onwards. I do get a few dribbles in my underwear, but that is ok.

Walking is still my major issue. I find that I start to leak about 1/2 kilometre into a walk and it feels like I am leaking continuously. However, when I get home and check the pad, it’s never too saturated. So in my case, it feels worse than it is. I am still not confident enough to go out socially, but that will come.

I had an urgency to pee during the day and stinging at the penis tip and was tested for a UTI at my local GP, the results of which were inconclusive. They gave me a course of antibiotics and that has definitely improved matters.

I found a physiotherapist who specialises in mens continence and have a session with her in a weeks time.

I wish you all well with your recovery.

User
Posted 10 Jun 2022 at 12:43

Originally Posted by: Online Community Member
One more question. Do any of you have experience with incontinece clamps, such as Dribblestop and the like? I'm tryng to understand whether they actually help or hinder recovery? Do they slow down the body's ability to regain control of continence? And, are they effective? I'm thinking of using them when I have to travel [I have a long haul flight coming up and am concerned about the stress and the pad changes] but I don't want to do anything that sets me back in terms of progress... any comments or suggestions please?

 

Many surgeons will say that you should try not to resort to penile clamps, etc., too soon after RP as it might delay natural recovery - they are better suited to men who are left with permanent incontinence. However, for a long journey, it seems to me to be a no-brainer and isn't going to damage your medium / long term recovery. I think something like the Conveen sheath might be better & more comfortable than a clamp?  

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

User
Posted 13 Jun 2022 at 20:17

Originally Posted by: Online Community Member
One more question. Do any of you have experience with incontinece clamps, such as Dribblestop and the like? I'm tryng to understand whether they actually help or hinder recovery? Do they slow down the body's ability to regain control of continence? And, are they effective? I'm thinking of using them when I have to travel [I have a long haul flight coming up and am concerned about the stress and the pad changes] but I don't want to do anything that sets me back in terms of progress... any comments or suggestions please?

I’ve tried both a clamp and the Conveen system. I bought the clamp privately but only used it a couple of times as I found it uncomfortable to wear, especially whilst walking. I found it had to clamped fairly firmly to shut off the leaks whilst walking. 
The Conveen system was prescribed under the NHS and after a fair bit of trial and error of the various sizes of bag and tube length etc, I found it enabled me to go out and about, walk etc with confidence. I discussed with my urology consultant who said he was happy for me to use the system as long as I only wore for walks etc and then removed it and used pads. The risk was, in his view, that one could be complacent and rely on the Conveen. I used the system for about 3 months but tailed off when I found I could manage a walk of over an hour using a level 3 pad. I now only use pads as my control has improved to the point where I can get by with 1-2 pads most days and I find pads more comfortable than being attached to the Convern tubing system. 
I agree with Lyn that the Conveen system would likely be more comfortable on a long haul flight but if like many, you don’t leak when sitting, you might be fine with pads. I wouldn’t personally attempt such a journey using a clamp. The Conveen system does take a bit of adapting to, not least which underwear to use. I found traditional M&D Y fronts best with an extra button hole added by my wife to allow the tubing to exit and attach to the bag. 
Hope this helps and you manage your trip Ok. 

User
Posted 15 Jun 2022 at 10:49

Thank you for that - and its very helpful. My sense is that I will do as you said, use pads and I should be OK. I'm on aisle seats all the way and I have no problems sitting or sleeping - the challenge is just when I get up. The top half of my penis is still quite sensitive and the idea of putting a clamp on it does not appeal.

User
Posted 31 Jul 2022 at 22:49

Hi all

I am 11 weeks post surgery and have been virtually dry for 2 weeks. I don't wear pads anymore, but still have the odd dribble.  I went back to the gym 3 weeks ago and that is a hit and miss affair. If I run on the treadmill I do leak, so I am mostly just walking fast at the max incline and I can manage that. I also went back to my volunteer role at the NHS last week. So slowly, I am returning to normal. 

I wish you all well on your recovery

 

User
Posted 31 Aug 2022 at 02:45

Originally Posted by: Online Community Member

Hi all

I am 11 weeks post surgery and have been virtually dry for 2 weeks. I don't wear pads anymore, but still have the odd dribble.  I went back to the gym 3 weeks ago and that is a hit and miss affair. If I run on this treadmill I do leak, so I am mostly just walking fast at the max incline and I can manage that. I also went back to my volunteer role at the NHS last week. So slowly, I am returning to normal. 

I wish you all well on your recovery



Hello, I wish you a speedy recovery! As for this treadmill - you can just walk so that your body gets used to such a load. Sometimes walking can be even more beneficial than running. You mentioned that you use incline and that's already great. Good luck!

Edited by member 02 Sep 2022 at 02:43  | Reason: Not specified

User
Posted 31 Aug 2022 at 05:58
Regarding leaking when you get up when I was at that stage (and still occasionally 7years later) "pre bracing" before getting up by doing an extra hard pelvic floor helped.
 
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