Regaining Bladder Control - How Did You Proceed?

Greetings all.

My prostate cancer as detected early. I had Robotic surgery 10-31. Surgery successful and cancer had not spread outside of the prostate. I ended up with my catheter in place for 4 weeks. It has now been out about 10 days.

My question is what steps have others taken to regain control? I am wearing pads / depends to deal with the leaking, but i have virtually no control. I don't seem to leak when sitting or laying down, but as soon as i stand up there is a good flow that i cannot stop. I am doing Kegels and exercising regularly. When i search for information, i am not finding much "how to".

Do you try to go every hour, wait for urges, retrain yourself, ??

Your situation sounds a lot like mine. I had a catheter in for too, too long, and then when it came out I had absolutely no control. It was awful. If I went to a class that lasted 90 minutes, I would change the pad right before class, and it would be overflowing at the end. This went on for weeks, with no discernible improvement. I needed to have pads everywhere I went, and a change of underwear and pants available, too. I was doing Kegels daily, but usually in a lying down position. Then I read you should do them sitting. So I started my Kegels in a sitting position and there was fairly quick improvement. I still leak, but not nearly as much as before. I'm now 3 months out from surgery, and using 2-3 pads a day. For a while I leaked so uncontrollably that there was often nothing left in my bladder when I when to the bathroom. Now I can hold it for longer periods of time. It is such a pleasure to have a relatively full bladder and to be able to empty it into a toilet! Never would I have thought that might be a cause for celebration.

Anyway, I found that Kegels in a sitting position helped a lot. Your results will vary, no doubt. But I wish you good luck, and patience.

FC

Post Edited (fiddlecanoe) : 12/12/2016 7:37:42 AM (GMT-7)

Chris,

Why did you have the catheter in for 4 weeks?

Bruce

I had my cath in for five weeks. URO/Surgeon had me do a cystogram (i think) to see if I was leaking internally and I was.... Had the cath come out too soon, I would have got to do the fun trips and have it put back in.

Took me 3 months to regain control enough to quit using pads, about 2 years until the occasional leaks got minimal. Still get the drop in the drawers if I sneeze real hard or something along those lines, nothing serious any more however.

I ran 7 miles a day every day right up to the prep day before surgery. Cath was in for total of 14 days, I had very little control when it was removed. The day after it was out I hit the trail again, though I walked the first week before kicking it back up to a run. I also cut down to 6 miles a day every day for the year after surgery. Then I bumped it back up to 7.

I do Keegles every day, the last sitting sets on the toilet just before I take off for the morning run and the standing sets just before the sitting sets. I make sure to seriously squeeze both my urethral and my rectal sphincter muscles and hold that squeeze.

I make a point of peeing freely as often as I can and of being empty before going out. I do not wait until I really gotta go before going. I own a portable urinal and am not afraid to use it.

To make sure you are kegaling correctly do it while peeing. If you can stop the flow then you are doing it correctly.
But, it can take time, I got to 95% continent, but it took 18 months.

I found that walking as much as possible really helped. I had just retired prior to my diagnosis and had plenty of time to walk. My surgeon credits that with my quick recovery from incontinence.

Tom

chris1960 said...
............... My prostate was very enlarged, and they had to do a lot of reconstruction around my bladder as they re-attached things. After surgery, he told my wife the repair work needed was significant and my recovery could be a little longer. ..................................

I had what I consider a pretty slow recovery compared to most. Pretty much a year until I felt safe to go without even a mini pad slipped into my under pants, although I was quite a bit better by 6 months. But I also had the bio-feedback/electro-stimulation training about 3 months in, which I think helped some.

But I wanted to comment on your large prostate, the extensive surgery, and how you are dry at night.

1: Large prostate: When I got back to my surgeon for the 6-7 week follow up, and I was probably a bit distraught over my continued incontinence(especially as he had told me he only had a 3% incontinence rate), he and his PA assured me that I was still likely to be OK, though it might take quite a bit longer for folks with large prostates. Though it usually took longer for us big prostate guys, the final recovery rate was pretty much the same.
2: And of course more extensive surgery often means more trauma and swelling etc which also slows down the healing and recovery, but he still expected me to be fine even if it took a lot longer.
3: The most encouraging thing he told me ( This guy was the Chairman of Urology at Vanderbilt, a major prostate surgery center) was that the #1 predictor of final success - even if it took longer in some cases - was being dry at night. Since I was dry at night and while sitting from the get go, he had full confidence I would sooner or later recover. Even though I have not done Kegels regularly for a couple of years, I would call my recovery 95-99% when it comes to continence. Bottom line, I never wear a pad except once or twice a week as a psychological back up during certain occasions. But even if I wear a pad all day, the small amount and # of drips I have are not enough for the pad to ever seem damp when I remove it. But my 1st 6 months were miserable, and I still had a good bit of problems up to about 1 year. You probably won't be that long, but if you delay don't get too discouraged!
4: Lastly, I was told that sometimes, despite their best efforts, the scar from the anastamosis(sp?)- where they suture the urethra back together- sometimes falls down into urinary sphincter when you stand up. If that happens, no amount of Kegels are going to be able to build the strength to squeeze that scar tissue and sutures closed enough for continence. If that happens, nothing but time - how ever much it takes for that scar tissue to shrink, and I suppose for the sutures to be absorbed, is going to solve that problem. Which might be an explanation for why I never had a wet night from the moment the catheter came out, but as soon as I stood up, unless I was actively Kegeling(and you can only do that for so long), I leaked like a sieve. I could always quickly stop even a very strong stream with a very full bladder from the start, but unless I was doing a Kegel, if I was standing, it was coming out. But 99% of that finally got fixed up.

Hang in there, good luck!

Chris, I must second what Pratoman said about biofeedback. I began seeing a Physical Therapist about a month after catheter was removed and continued to for about 3 months. She helped make sure the kegels were done correctly and progressively increased their intensity with each visit. I believe it was a positive in regaining continence. May have been a benefit that she was quite attractive too! One thing I remember, is after seeing very early improvement, my doctor told me there would be good days and bad days. He was absolutely right. Hang in there, wishing you the best.
Mack

Update - I am making progress and I am actually keeping a diary of status and small step changes.
Tomorrow is 3 week post-catheter.

I am staying dry all night. I have to "hold myself" when I get up, but then I can empty my bladder in the toilet.

When I first stand up, I can hold the flow by kagel, for about 5 seconds if I don't move.

I actually went "on demand" once Saturday!

Doctor visit this week.

My personal opinion based only on my knowledge of working out skeletal muscles rather than anything I have learned about kegles is that it would be best to shorten the range of motion of the pelvic floor muscles not lengthen it. That would make the muscle as tight as possible. To do that I would expect that you want to do the kegles when the muscle is in the shortest state possible. That should be when you are laying down with an empty bladder to minimize the pressure when you are doing the exercises.

I always do the kegles when I first go to bed with an empty bladder. I never had a major leakage problem (only uses light pads for about 8 weeks) but I don't know if I can attribute it solely to when and how I did the kegles. Maybe just something to give a try.

Great news on your progress. As you know by now, every patient is different. It sounds like your doing exactly what your body needs. I expect your continence will improve dramatically from here on out.

Chris,

It sounds like you are making great progress, especially considering the length of time you had the catheter installed.

I am 7 weeks post-catheter and am using one heavy duty pad every 24 hours.

Bruce