question for those who have recovered continence

or who have mostly done so:

Do you ever lose the need to consciously contract the pelvic muscles or IOW Kegel all the time?

For those who are dry or mostly dry without AUS/Sling, do you have to be on the alert for the rest of your life, contracting the muscles whenever there is going to be even a small stress, or does it ever get back to mostly automatically controlled like it was before surgery? Something you don't have to think about?

Before surgery I never had to think about this. Even if I was working out I stayed dry without having to "consciously squeeze" anything. 3 months post op I am still wet, but def improved. But if I am up and especially walking, a more or less continuous kegel is required. I was just wandering if that is to be the expected normal from now on?

Thx

Bill

Post Edited (BillyBob@388) : 6/6/2014 8:56:44 AM (GMT-6)

Bill,
I'm 3 mos post op and am to the point where I'm only cognisant of it when I sneeze or am doing something that involves a lot of heavy activity. It is becoming second nature but I'm still on a pad a day unless I'm more active.

Thanks guys for the quick responses! Y'all make the point that it is probably not all that useful to compare my experiences to others, as we vary so widely. And I totally agree with that, and know it to be true. For example, many here recover quickly or even, amazingly to me, immediately. But here I am 3 months out and no where near totally recovered, but I also know this is quite common, even among those who finally recover. And of course, there are those of us who are going to need an AUS or sling.

Still, I feel I can get what I wanted to know, regardless of how varied the recovery experiences, by asking those who have recovered, whether in one day or one year, what is the recovery like as far as consciously having to hold it all the time, as opposed to when your bladder is about to burst from those 3 beers or cups of coffee you just gulped. Even if I could hold it for hours or against a large stress like moving furniture or working out with weights, it would be sort of miserable to have to make the conscious effort I have to make right now during all waking hours unless I am sitting.

This is really on my mind as I just got back from a 9 day tour of Europe(Amsterdam,Belgium and France). The normal day was long bus drives followed by long walking, or steep stairs or even ladder climbing to get into some places. Here is the thing, in my past and current experience with Europe: they may be way advanced over the USA in many areas, but when it comes to bathrooms they can not compete! Bathrooms can be really hard to find and widely spaced and if you do find them you very often have to pay. The medicine may be free, but you must pay to pee! It can be most unpleasant, I assure you, to have been walking for an hour plus, kegeled down most of that time trying not to absolutely soak your pad or worse escape the boundaries of your pad, and finally find a restroom and then as you are just about to lose control to have to be scrounging in your pocket to find a 1 Euro ( about $1.40) coin(sometimes just 1/2 Euro) to hand to the attendant before you can go in! Sometimes(but not always) even when you are eating in a restaurant, or inside a museum you have paid to go in, you still have to pay extra to pee! Insanity if you ask me. Especially for a guy who often has to pee(just a bit) every 5 to 30 minutes while walking! smhair As soon as I got back to USA airports, it was a joy to see bathrooms seemingly everywhere, and every one I used free! I managed to average only 1.2 pads a day, but a few of those were pretty soaked, and usually about right after noon I would be exhausted from trying to hold it. So this was on my mind when I started this thread.

But it looks to me like, that for most of us at least, that if you do ever actually get dry or nearly dry, that you can actually get enough autonomic control from the external sphincter- like we all used to have from our internal sphincters- to not have to constantly be thinking "squeeze" just while walking around.

And it seems to me like there is no real reason to think this is not quite possible for all of us- at least those of us lucky enough(the majority?) to sooner or later get dry- even if it takes some of us a long time. I can't see any reason to think that if one guys external sphincter can develop autonomic control that we can't all get it, unless something went wrong in surgery and sphincter damage happened. But in that case we are probably not going to get dry anyway just by healing.

And clearly some of you guys have developed a good bit of autonomic control, where you don't have to constantly think about it, so that give me hope for the future! BTW, I was told to expect a good bit of extra time to continence due to my 107 gm prostate and bad cancer with wide cut, but told I should expect full recovery sooner or later, probably more the latter.

I know it doesn't apply to anyone but me , but I stopped using a single pad daily at 13 weeks. I did not do kegels. I have self control of my bladder except when I need to have an urgent BM . Then I need to be near a toilet or I'll leak before getting my pants down! I believe I've read that two out of the three mechanisms for bladder control are gone after RP, so it's not surprising that needing to have a BM urgently would trigger an opening of the bladder flood gates! I must say that since RP I need to go more frequently. I no doubt cause some of that problem by drinking too much alcohol.
Bob gl9 pt3b

PeterDisAbelard. said...
Bill,

If you can be more-or-less continent with constant effort at three months I think that is pretty hopeful long term. But, I have crashed your party here since you wanted to hear from guys who don't leak and, at two years next week, I still do.

Party crashers welcome, Peter!

Break60 said...
I know it doesn't apply to anyone but me , but I stopped using a single pad daily at 13 weeks. I did not do kegels. I have self control of my bladder except when I need to have an urgent BM . Then I need to be near a toilet or I'll leak before getting my pants down! I believe I've read that two out of the three mechanisms for bladder control are gone after RP, so it's not surprising that needing to have a BM urgently would trigger an opening of the bladder flood gates! I must say that since RP I need to go more frequently. I no doubt cause some of that problem by drinking too much alcohol.
Bob gl9 pt3b

Yeah, that was another element to that Europe trip, way more wine and beer than normal, especially in the day time! Many places charged as much for water as they did for house wine, so it didn't take me long to stop with the water!

Richp14 said...
Wore pads first couple weeks after surgery was pretty much dry at four weeks. Now at one year post op it's not anything I even consciously think of. Very small insignificant stress leak maybe once every 4-6 weeks, like maybe a drop??

Great to hear, especially "not anything I even consciously think of"! And one drop or 10/month, I would not even notice that!

WAORGANY said...
At seven months I am still just as wet as I was at four months...this is making me quit my current job, the second time I have done so since my surgery due to not being an Le to control my bladder, this has been a miserable experience for me and I wish everyone a better experience than me, soon to be unemployed for the first time since High school and it feels terrible, totally worthless...wish you all the best...I plan on spending the next few months doing kegels all dY, walking 5 miles a day, doing yoga, relaxing, drinking a beer or two and trying to figure out how to stop the madness. Sound a like your doing better than some hang it there,

Paul, that really sucks. What about a clamp to help you stay drier while at work?

BillyBob@388 said...
The medicine may be free, but you must pay to pee!

Insane indeed!

Scooterdu said...
I am 6 months out from my RALP . I have been wearing a single light pad for 5 months. Sometimes I am completely dry for hours but then if I get up a certain way, I can feel a dribble. I have also noticed that if my bowel is upset I also tend to leak.

My Uro also told me that recovery is also age dependent. I am 64 so it can take me a little longer. It is frustrating but I believe I am making slow but steady progress with the leakage and the ED.

I have also noticed that it has taken my bowel months to get back to normal. No one ever talks about that?

Ditto on the bowel thing, just not quite right for months, though nothing major except one thing: I was laid low in the 1st week of recovery with painful, bleeding hemorrhoids. I had never experienced that. I later found out that it is not an uncommon complication for this surgery, due to some veins that get stapled. I had no warning of that, other than to avoid constipation in general.

BillyBob,

Yes I gave used a clamp, but you CSM only wear those things so long, and by using it it makes you not use your muscles to help control things...just hope my plan works...