I posted this on the general message board, because I couldn't find this one, but now I have, so I am re-posting it here - more relevant.
I had an open radical prostatectomy Oct 13 2008. Incontinence was of course a side effect. I suspect I am very lucky that the incontinence is only of the stress incontinence type, where anything raising intra-abdominal pressure causes urine leakage unless I clamp down on it. So that kind of control is possible.
I have tried hard to find information on getting this stress incontinence under control, but not found much. Everywhere you are advised to do lots of Kegels, but I haven't found much at all on what to do besides that, so I wish to list what I have managed to learn by doing.
First, purely by chance, I found a very helpful book called Beyond Kegels, by Janet A. Hulme. It addresses incontinence in general, and although it hasn't much on post-prostatectomy incontinence specifically, it is still very helpful. It has a series of exercises ranging from really telling how to do Kegels, to strengthening a series of other muscles that enter the lower abdomen and can help gain control. I believe that doing these is helping me a lot.
As to what to do with the ability to do Kegels, the short answer is to contract the Kegeling muscles just before doing anything that raises pressure in the lower abdomen and therefore presses out urine. This is easier said than done, and I am finding that a physical retraining process is needed and slowly happening. For example I am well beyond making a Kegel part of every cough or sneeze, since that was one of the first and most obvious events that caused leakage. But a lot more movements and maneuvers cause intra-abdominal pressure that I didn't at first realize would do so (with leaks the result). Examples of such movements include bending over while sitting, or turning while bending, or lifting a weight that causes a lot of abdominal muscles to clench.
Slowly but I think reasonably surely I am gaining initially a conscious awareness to clench the Kegel muscles before or as part of a range of maneuvers. The next step is to gain the ability to have the Kegel become an almost subconscious part of such maneuvers. Once I have noted a type of maneuver that will cause leaking, I practice it quite a few times while consciously Kegeling, and of course when I actually need to do them. Over time the doing of the Kegel hopefully becomes part of doing that maneuver, but of course I forget sometimes and have some leakage.
I still find things that cause leakage, that I don't do often do, and upon doing one of these things discover that they cause intra-abdominal pressure and leakage. I'm sure that will continue from time to time.
A few things may be very difficult to fully control, such as jogging or jumping, or other major athletic maneuvers. But I'm 61 and don't do all that many of these.
So what is "dry"? The books I've seen define it as needing no pads for leakage. I was very reluctant to try a day without pads at first. I first tried it on weekend days and with old jeans, etc., as I had heard from another prostate cancer survivor. The first couple of weekends weren't too bad but did not give me confidence to try going to work without pads. Finally I had a weekend that was not too bad. I decided to try one day at work without pads. That was manageable so I didn't use them the next day either. I have now gone two weeks without pads without an incident that was noticeable by anyone else.
So far dry is not absolutely no leakage. What it is to this point is no leakage more than a few drops at a time, and not very often. Underwear has been sufficient to capture those few drops. This doesn't have odor when happening. I choose (and can wear to work) relatively informal slacks, even jeans, but i think I could wear dress slacks and not have events that would be visible by wet darker coloration (which of course would in any event dry and go away).
I can live with this and prefer it to pads. And going without pads focuses the mind wonderfully on paying attention to those movements that may start a leak, and the exercises in Beyond Kegels include fast Kegeling, which catches the leaks and keeps them small.
Nights have worked out ok. Lying flat means little intra-abdominal pressure, so few leaks. I haven't had a major leak while sleeping after the first couple of weeks after catheter removal (and even then they weren't very large). Perhaps I'm just lucky on this, I have only my own experience to go on.
I hope this is useful to someone. I also invite others to relate their experience on how they got to acceptably dry, or could not.
four weeks later (Jan 09) - the progression toward little leakage continues, this is headed for almost subconscious control by making the needed muscle-use patterns habitual..
Posted: 09 Jan 2009 08:34 AM Originally Posted: 08 Jan 2009 11:01 AM
Thank you for taking the time to post how everything has went for you. I have searched wide and far also, and as you said, there is not much info out there. I go in for surgery on the 21st of this month, and have been trying to learn all I can before I go in. I will visit the bookstore this week and track down the book you mentioned, and will post how things go after the surgery for those who may be interested. It has been quite a journey so far, and I will see what tomorrow brings. Thanks again for posting.