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Incontinence Recovery

I am recovering from a laparoscopic prostatectomy done on Mar. 14 (about 2 weeks ago). The catheter was removed Mar. 25. I have absolutely no flow control. It's as though the catheter was still in place, since urine dribbles continuously if I am standing or walking.

There is no leakage while I am sitting or lying down, but the urine starts flowing as I'm in the process of standing to get out of the chair or bed. It's now Mar. 30 and there as been no improvement in my incontinence.

I've read many of the experiences posted on this site. Some men were dry from the moment the catheter was removed. However I haven't found many descriptions of incontinence issues during the weeks following surgery.

If anyone out there has experienced incontinence similar to what I'm experiencing, please let me know how it turned out.

Any suggestions on what I can do to improve control would be most welcome.

Re: Incontinence Recovery

JH calm down!

Your LP was just 2 weeks ago and catheter out only 5 days ago! After my robotic it took me four and a half months to get full continence. Your signs look very good. You are already dry lying down which is always the first step and dry when sitting which is often the second step. So far very good.

The dribbling and dripping when standing and walking is perfectly normal at this stage. Even now if I am standing (especially in a bar drinking!) and I laugh out loud or sneeze, a drop often squeezes out. But it's not enough to wear a pad.

They say that Kegel exercises help and I certainly did those although not in a very committed way. Walking helps strengthen the whole area down there.

It's hard to believe this now, but it will get better. My uro said to me that although after the op we men are never the same as before, we will hold our water better than our wives do!

Ted from England.

Re: Incontinence Recovery

Thanks Ted. Your reply has helped me calm down. (I guess you could feel the worry in my fingers as I typed the post :-) Prior to surgery, I told the surgeon my worst fear was severe incontinence for the rest of my life. For me, this would be worse than loss of sexual function, even worse than a recurrence of the cancer.

I have also been doing Kegels, but I can't seem to do them correctly. The instructions I got were to tighten then hold for 3 seconds. I can tighten the muscles, but can't hold. The muscles seem to automatically relax on their own as soon as I've tightened them.

For now I'll just relax and wait for things to improve.

--JH in Canada

Re: Incontinence Recovery

JH,
It is way early in your recovery, as others are telling you. But I wouldn't abandon the Kegel exercises. If you can tighten ok then you should have all you need to regain control. However I expect you will need get that muscle to hold before you get much improvement. And you just need to work at it calmly but regularly. Try when sitting or when lying down or when walking. It will come.

Maybe others have a different idea. But my improvement came steadily once I got onto a regular Kegel schedule. And not much before that, I waited about 3 weeks before I even started the Kegels.

Re: Incontinence Recovery

I argee with Bill. I had the surgery January 25th. The first few weeks without the catheter were kind of discouraging. I had also told my doctor that incintinence was my worst fear. I went from 9 pads per day to 1, and probably do not need that one. I noticed the biggest improvement once I committed to doing the kegels, hold for 10 seonds, relaxe for 10 seconds several time a day. Now the only leakage comes from sprinting or picking up something heavy. Sprinting is probably the thing that really reqiuires a pad at this point. Don't give up hope!!!

Re: Incontinence Recovery

JH, everyone who replied gave you excellent advice. My worst fear was like everyone else's, I'm 64 and had surgery Jan 4th but still must use pads 24 hours a day. With me also, the pads stay almost dry while lying down or sitting but the second I get up I have to hurry to get to a toilet.
I have severely limited my fluid intake since the catheter was removed and always carry an extra pad in my back pocket when shopping, etc.
Some men have immediate control, with some it takes weeks, months and I've heard a few it took as long as a year.
After 10 weeks post cath removal I wish I had better control but I know it just takes time and are used to just go with the flow. (pun intended)
There are millions of people who wished they only had a few piss-pads to change during the day instead of being confined to crutches,a wheel chair, a hospital bed, etc. for the rest of their lives.
Don't sweat the small stuff, JH, this too shall pass.
Ralph

Re: Re: Incontinence Recovery

I like your attitude, Ralph. But, I don't have your strength. I'm giving this continuous incontinence one year. If it isn't better after that, I'm assuming this is how life will be. Another thing I'm assuming is that life will be very short after that. Of course, when the time comes, a lot of hot talk is often forgotten.

Re: Incontinence Recovery

JH
It takes some time. I thought the same thing when mine was removed Feb. 26, 2008. I was really taken back by the initial lack of control. I was dry at night but man, when I would stand up and walk around it was gravity taking over. It's been about 5 weeks and it gets better by the day. I can go with about 3 pads unless I'm real active lifting and working.
Give it some time before pushing any panic buttons.
I worked out in my weight room and walked on my treadmill this a.m. no leakage.
Good Luck

Re: Incontinence Recovery

It's been said before but it can't be stressed enough. Do kegels. Lots of them. I started right after my diagnosis when my doctor told me to start. I wasn't all that organized about it but I would do them sitting at my desk or in the car or whenever I thought about it. It's hard at first, but like any muscle, endurance comes with training and repetitions. The hardest thing, I thought, was learning how to control the right set of muscles.

Re: Incontinence Recovery

JH
Just want to echo what everyone else has said. I had my robotic surgery Jan 11. I am still in diapers but pretty much like you. Sitting and nights are a piece of cake but walking was slower. I am not out of the woods yet but I can tell that the control is coming back. (I still have problems with the Laughing and Coughing though too!!!) Hang in there and be patient...and keep doing those excercises!!!

JR

Re: Incontinence Recovery

I am only 8 days out of robotic surgery so I cant add anything at this time. I am leaking all the time as expected.

But my doc, out of a university hosp in the USA midwest, has a brand new way to do kegels. Take it for what its worth for I am trying it tonight.

I stop all liquids early in evening around 830 or 900 p.m. I then do kegel and hold for 3-4 minutes and then rest same. I am to do 5 reps at first and then build to 10. I never heard of it this way before. Doc told my wife when I was in surgery so I had to call him and get details. Today..

Re: Re: Incontinence Recovery

Hi Frank,

Is the new way to do Kegels related to the 3-4 minutes? I can barely hold one for 3 seconds!

Could you provide details on how you were taught to do Kegels? What's the relationship between Kegels and stopping liquids early in the evening?

Sorry for all the questions, but I'm excited by the possibility of doing a Kegel for over 3 minutes. That would certainly allow me to stand up and walk to the bathroom before emptying my bladder into the pad.

Thanks,
JH

Re: Re: Re: Incontinence Recovery

had robotic sur 10 months ago am 55 years old have done three million kegels still leaking not as bad as 10 months ago but by afternoons or if i drink alot oboy find when sitting or sleeping if not better by august thinking of haveing a sling sur. been to three diff doctors any advice would be welcome

Re: Re: Re: Re: Incontinence Recovery

Pete
Have suffered incontinence since radical prostitectomy in 2004 (I am 57 now). Recently has got to 3/4 pads a day, especially if walking or taking part in any activity. Had urodynamic test on bladder and the spincter seems to be working alright so the issue is more stress based. On this basis am planning to have sling operation at end of June - putting tape under urethra and so moving it back closer to the bladder. The surgeon has completed 5 so far - 4 with good success (either dry or much improved) and 1 who had problems peeing afterwards and had to have tape removed. Will keep you posted.

Kind regards
Tony Sawyer

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Replying to:

had robotic sur 10 months ago am 55 years old have done three million kegels still leaking not as bad as 10 months ago but by afternoons or if i drink alot oboy find when sitting or sleeping if not better by august thinking of haveing a sling sur. been to three diff doctors any advice would be welcome

Re: Incontinence Recovery

Just an update - the male sling operation was completed successfully and so far the results are looking promising. Have to refrain from any leg stretching movements for 6 weeks to permit the sling mesh to integrate with pelvic floor muscles. The bladder seems to be holding considerably more than before, and so far have not needed to use a pad. The real test will be after 6 weeks when I try and exercise. Will keep you up to date on this.

Tony in the UK.

Re: Re: Incontinence Recovery

As promised a brief update. The male sling has been in place for 7 weeks so far. The incontinence has gone, and the only minor leaking I get is if I cough (the amount is only a drop or two). Must continue to be careful not to overstrtetch, although have resumed some basic exercise at the gym .
From my point of view, it has made a remarkable difference to a long term problem.

Re: Re: Re: Incontinence Recovery

Tony,

Which sling did you get? How bad was your incontinence before the sling. I might use as many as 6 briefs (which I find hold more) a day and as an American-Scotsman I fill them to the brim before changing as they a priced quite dearly here in the states.

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Replying to:

As promised a brief update. The male sling has been in place for 7 weeks so far. The incontinence has gone, and the only minor leaking I get is if I cough (the amount is only a drop or two). Must continue to be careful not to overstrtetch, although have resumed some basic exercise at the gym .
From my point of view, it has made a remarkable difference to a long term problem.

Re: Re: Re: Re: Incontinence Recovery

Dino
My continence required 2/3 Tena pads per day - level 1, and most of my leaks occurred through movement, stepping up, exercise etc - ie mainly as a result of stress. The sling was a Urethral Support Sling, using AMS mesh, and the sling was secured by passing it through the holes in my pelvis to hold the sling in place (in hospital overnight only).
8 months later and improvement has held. I get a very small amount of leak if I cough, or make a strenuous movement, but all esle is good. I use a ladies panty liner during the day, just in case of accidents from coughing. Otherwise all is good - touch wood.
Hope this helps
Tony

Re: Re: Re: Re: Re: Incontinence Recovery

Thanks, Tony.

AMS has a new product here that does not require affixing to the pelvis that I will be trying. However, my incontinence is much worse than yours, although it does appear to be improving slightly as I approach my ninth month since surgery. My surgeon wants me to wait for a full year in hopes that nature will solve the problem. My Urologist says he's dreaming due to the damage to the sphincter. However, waiting cost only the extra for diapers and if it heals that would be preferable, I think. Who knows, it may heal and then give out two years later and be worse than ever and unfixable short of the artificial sphincter which I am resisting.

Thanks for your feedback and continued good fortune.

Dino

Re: Incontinence Recovery

JH
When my catheter came out I found I dribbled if walking or stretching or coughing, but dry sitting and also dry overnight - sleeping. However, overnight, I did get up a couple of times to empty bladder, and had to move carefully to bathroom to prevent dribbles.
I completed pelvic floor exercises at least 10 times a day both short gripping (it is as if you are pulling your penis in and alsoclenching your buttocks!). Over the coming months this seemed to help although in my case it was not complete and used towels during the day.
I subsequently had a bike accident so for about 2 months did limited exercise and this resulted in dribbling most of the time. Hence the fitting of a sling to try and provide support.
My suggestion is persevere with the pelvic floor exercises - these take about 3 months to see measurable benefit.

Good luck

Re: Incontinence Recovery

JH

I had an RP a 2 we bit over 2 weeks ago (24 July 08) and my catheter out 4 days ago. Like you, I leak continuiously while standing, walking etc and again like you, I am dry at night and while sitting.
I would be interested to hear from you (or any one else in a simillar sitiuation) on how your progress has been over the last few months, much improved I trust.
It's good to hear that I am not alone with this.

Regards

Tony Stone - Melbourne, Australia.

Re: Re: Incontinence Recovery

Hi Tony,

You are definitely not alone, and, yes things have improved greatly for me. I've finally updated my story (http://www.yananow.net/Mentors/JohnH3.htm) to chronicle my experience with regaining urinary continence. I won't repeat my story here, but to summarize, 5 months after surgery my day-to-day life is mostly back to normal. I rarely think about urine control and, as a result, I've stopped doing kegels. I only wear a pad when I'm doing home renovations that involve heavy lifting. A heavy lift will cause a small squirt. I still carry a pad and spare underwear whereever I go, but that's only because I haven't bothered to take them out of my backpack.

For me there was no magic, no sudden transition. The journey from no control whatsoever to where I am today was very slow. In the early weeks, I was lucky to have my wife make me think carefully of where I was 1 or 2 weeks previously and recognize that there was some improvement, however small.

Since my original post, I've received e-mail from others whose experience matches mine. I'm sure that yours will too. Remember, any improvement, no matter how small, is a step in the right direction. And some days, you will feel like you've gone back a step or two.

Do the kegels. I firmly believe that they helped me.

Good luck,
JH

Re: Incontinence Recovery

Tony what you report is perfectly normal after the op. Dryness comes first at night usually pretty quickly as it has with you. The rest takes longer. How long? How long is a piece of string?

With me it took 4 months to be completely dry and pad free. Even now though a good laugh, cough, sneeze or fart especially after too much alcohol will lead to a small squirt and some dampness but nothing that would show outside. (How much is too much alcohol? How long is a piece of string?)

I did do Keegles but not overmuch although many people on the site swear by them. I think you can over do those at too early a stage and should be careful to moderate them if you feel sore and strained down there.

If only the ED would clear up as quickly as the incontinence. How long is that piece of string?

Ted from England

Re: Re: Incontinence Recovery

Ted,

Thanks for your reply and words of encouragement. You are right, it has been only 5 days since I had my catheter out and it does take time, four months should go pretty quickly particularly wtih a glass of red or two.
I to am doing the pelvic floor muscle exercises under the guidence of a continence physio. I started these before my operation and I have my first appointment since the operation this afternoon to check progress and technique.
ED, don't even think about it(yet) at 56 I've got a long way to go.
Anyway, all the best and regards

Tony Stone, Melbourne Australia.

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