..leaking & incontinence questions..

..Ok, I know this has been discussed a billion trillion times, and I have looked back at past treads hundreds of pages back and have read some. I still need to ask out of a nagging itch deep inside. The issue of leaking & incontinence. This is what is going on, almost 3 weeks out of surgery. When I sleep at this time the last 2 nights I think I'm 90% dry. I wake up every few hours and pee (practicing kegels like let it flow, hold it for 10 seconds, let it flow 3x) then go back to sleep. My pamper seems to be dry the past 2 nights. I have been drinking less also. Then I wake up, get up and when walking around I leak like a sieve. I have been walking a mile a day for the past few days and plan to continue, but I leak like a sieve. Walking and squirting, walking and changing napkins so my pamper could last. If I rest and lay down I can save it up and go pee, if I walk around I'm a mess. Sorry if I sound impatient or going over the same old stuff but I would love some feedback on others personal experiences. I'm just looking for some good clean support. I am scared this will be the new norm forever, sounds crazy right? Ive been called worse :). I really like this forum and appreciate all The support you all give and all I have learned thus far..

I agree with RCS. I walked a ton and consciously did kegels while moving and it really helped my muscles to relearn their jobs. You are still early in the healing process. I was really really lucky according to my doctor with the incontinence issue, but most guys do get there. Keep up the walking and you will get there too.

Best wishes,
Tom

I second what Peter said. This sounds like pretty normal stuff, but it will get better.

Frustrating as it is, you just have to manage it the best you can for a while hang in there There's a good chance you'll be dry in another three months, so try to keep your sense of humor.

Jonathan

You say 3 weeks out from surgery, so I calculate that you are about 10 days on from having the catheter removed. On that basis I think you are probably doing about normal - not that there is a real normal.

I do remember that feel that there was a little suqirt with each pace I took, though sometimes it was just the sensation of thee being a dribble.

Things inside you will still be doing a lot of healing. That also means things like the swelling going down and things moving about to reposition themsleves, all of which can change how and when pressure acts on bladder and pipework etc,
Don't do too many Kegels, that can over tire the muscle, you are only trying to gradally build up muscle strength, not wear the muscle out.

Sorting continence can be a long journey, often becasue it's so diffilcult to spot any imporvment from one day to the next. Perhaps try not to look for anything liek a daily improvement and think long term like say working on your abs down the gym. I expect that when you go for your first post-op test session you may find you can look back on this weeka dn realsie things have indeed got better.

Alf

I'm no expert, but it sounds pretty normal to me. I leaked a lot for about 3 months then over the next few weeks it came back under control. Like most, I was not very pleased about the situation while it lasted and began to think that it would never be resolved. And now I'm two years post-op and it the leaking stage is becoming a distant memory.

Stay positive . . . all the best!

Hi Appleseed,

I grew up in Queens and my mom still lives there. My husband became dry at a little over 3 months with the help of biofeedback. You are ahead of him in your progress. He was not at all dry at night until he started biofeedback at around 2 months after surgery (biofeedback was at New York Presbyterian). Before he became continent he was grumpy and freaking out that he would never be dry. Now incontinence is just a memory. Based on your progress so far, I think that you will be fine, but it does take some time.

I started one of the threads you probably read "Incontinence is making me crazy."
I'm apparently one of the 1/3 who aren't continent at 3 months, as I'm nearing that anniversary, so hoping I'll make it to the 2/3 of those continent at 12 months.
I can relate totally to your feelings. I still grapple with this, although I've become a bit more philosophical about it. When I subconsciously started singing "How dry I am" to myself, I had to laugh.
Whatever it's worth, I have about the same experience at night - getting up frequently to urinate a fair amount, so I can hold something back. Daytime is something else. At work (teaching) I'm up and down all day. I've found that I'm fine when I can remain sitting or lying down. It's getting up when the gravity thing takes over. I try to give a good squeeze and I think I'm getting very slightly better.
It's immensely frustrating and I feel like an infant at times. The best advice I could give you is to take it easy on yourself psychologically. It is what it is and we have to do what it takes to keep on living the life we want. Hang in there. Feel free to Email me using my profile information if you want to communicate with someone who's going through the same thing. When I read about all the guys who were fine after the catheter came out, I get green with jealousy. And that's not even talking about ED!

Hello Appleseed, I feel for you and can relate. I'm 14 weeks post-op and this past weekend I finally am "pad free".

The first couple weeks after surgery were brutal. If you search for posts by me you'll see how I had the "walk, leak, walk, leak..." thing going on. I was always dry lying down so I was lucky there. I had people telling me about their 4 week post-op and totally dry experiences and was getting frustrated because that wasn't me. I went into surgery in top physical shape and was given the impression that based on age, fitness level, and zero pre-op symptoms I'd be continent in a short time.

The reality is that we're all different. The best surgeon and top physical fitness are great things to have on your side but they don't guarantee the outcome. I've come to learn there's things that just are the way they are and in my case it did work itself out.

I did the kegels prior to surgery. The key is making sure you're doing them correctly. I was instructed to do sets of 10 where you contract for 10 sec, release for 10 sec and repeat that 10 times. Try doing this 6 times a day. A lot of people have trouble holding the contraction. I learned from bio feedback from a wonderful physical therapist I saw that I was not able to hold the contraction strongly for 10 seconds. She had me drop to holding for 5, relaxing 5, and then repeating still doing sets of 10 6 times per day. She also had me doing 6 sets of 10 short contractions with a hold of 2, release 2, etc. This was for quick response time.

For me I was at 1 pad per day for a long time. I then went up to 3 for a few days and freaked out. Things settled down and there was no medical reason for it. My local doctor told me early on that things sometimes do get worse before they get better and that happened to me.

Saturday was my first pad-free day and so far so good. It feels great.

I'm back to cycling 50 miles at a shot at a fast pace and not having side effects.

I guess what I'm saying is hang in there, get the kegels going and do them right, and if need be ask your doctor for some help or a PT near you that might be able to help. Understand that it could take 4-6 weeks of kegels before your body responds and starts to "just work". Remember that we're all different and the 4 week poster children are unfortunately not what we need to see when our recoveries go much longer.

The other thing I'll say and it's easier said than done, keep your head in the game if possible. Best wishes for your recovery.

BillD, congratulations on your continence. We both envy you and are happy for you as well. Some days it seems ever so slightly better. Then the next...

Hey Appleseed,

I was one of the "lucky" 1 guy in 9 who didn't dry up at one year. I am also an engineer and strongly believe guys should weigh their pads to determine if they are improving. (If you use your wife's kitchen scale don't tell her!) Daily changes are so subtle you don't see improvements. I plotted my data every day and watched when the line flattened out at around 1 year and predicted I would never get better. That is when i decided to have surgery to fix it.

Isn't it strange that something so minor can affect your life in such a big way? When I first came here I was almost embarrassed to complain about wet undies. Guys were suffering with PCa and HT and radiation and here I was, PSA of 0 but distressed by a wet winkie. (Sorry for the technical term).
Believe me, I hear you brother. So far, you are right on schedule.

Keep in mind that even if you don't improve on your own, there are plenty of solutions that will fix you up. That knowledge kept me going. I had a sling installed and love it. It works great. I'm just like before. No pee pad necessary. I'm pretty sure I'm responsible for Kimberly Clark stock dropping a millionth of a point.

Do your kegels, exercise, and take data for 3 months. Odds are you will be in the 2/3 group who are dry at 12 weeks - even though it feels like 12 years. ;-)

Jeff

..You guys & gals are wonderful. The personal stories are informative and heartfelt, "The Salt of the Earth" just like I like it..
..Thanks so much............Nick........

Ok leaking from movement....that took awhile for me but I am 99 percent on that one now after 1.5 years...Kegals are hard to do every day but like others advice vary the number and the length. Kegal in the tub...do 25 and do 6 lasting ten seconds each then 15 more...poof same as 100. Another good place top do them is on the shi, er toilet. ;) before and after the dump....make it happen. Soon you be able to do the while you are walking....THEN you've reached the Kegal hof...


Just learn to stand from sitting or getting up from prone to lock her in...You'll get used to it...lay on your back and get up easily and learn what it  feels to hold it in while you're getting up.  For awhile any sudden movement cause me to drip a little now its sneezing coughing etc...mostly.




I think we all will have issues occasionally I Peed the bed last week a ton one night and have no clue where it came from...(well I do know it came form my PEE PEE hole but you know what I meant. ;)



In a few months you will see lots of improvement...

Once you've been out a few months when you're home let it build up say after dinner than then hold it while doing some light movements...(the same moves that cause you to leak now.  (that will help you learn the felling it takes and also stretch your bladder....I would wait on that a few months cause its all just hanging by a thread right now...no need to needlessly traumatize down there...

Post Edited (hawkgfr) : 5/28/2013 6:59:51 PM (GMT-6)