How Dry You Are?

Today I'm eight weeks post-op, and still leaking. I really thought I had a good shot to be one of those who leaked for only a week or so after catheter removal. But that wasn't to be.

Frankly, I'm not coping well. I know, I know… patience. I read over and over again posts offering encouragement to guys in my situation. But I've noticed that the guys offering the encouragement seem to always say they are still using a pad a day, or experiencing at least some stress incontinence.

This in itself has been making me anxious.

Are there any guys out there who were leaking significantly a couple of months after surgery, who are now completely continent? And by continent, I mean, normal. Just like before surgery. No pads, no leaks. Ever.

As for those still incontinent at a year or two or more, like Jefnet, and still managing to keep it together somehow, God bless you guys. You have a special place in my heart, and I suspect, the hearts of many on the forum. After reading so many of your accounts, I realize I don't have anything like your mental toughness.

I can't stand the pads, or the feel of leaking when I'm active, so I've largely stopped being active. I tried returning to teaching, but couldn't make it to the break before the pad (Depends Guards) spilled over and soaked my underwear. This was more than I could take. I've stopped working and I don't like going on walks, as I find the feeling of leaking when I walk extremely unpleasant. I know there are those of you who find it just as unpleasant but suck it up because you believe the walking is good for you. I just don't have that in me.

A couple of months ago I was completely functional and my quality of life was great. I agreed to the surgery on the premise that less than 5% of guys are incontinent for more than a few weeks or a couple of months at most. I realize now the surgeon and my therapist were painting an unrealistically rosy picture. Now, I am sitting in my own piss, and for what? The cancer may be "gone," or it may not -- the tumor was not confined to the prostate (although the margins were negative, thankfully).

Please forgive me for sounding whiny. And believe me, I'm profoundly aware that many have it much much worse than I do. To you guys I apologize especially.

But I'm in a dark place right now. I'm regretting the surgery, and there's no one I can tell this to. My friends and family have been so wonderful and supportive, I can't dump this angst on them. At this point I feel the cancer would ultimately have shortened my life without the surgery, but it may well do that anyway. And now I'm left with a disfunctional body. I feel like I've been taken apart and put back together wrong, and I guess I'm grieving for my normal pre-surgical self.

Well, thanks for reading this far, those who had the patience to do so. I just needed to get this off my chest to somebody.

I won't attempt to tell you to talk you out of your feelings, etc., because that wouldn't take in your present state of mind.  I understand your sense of loss, your anger, and your depression.  There isn't much I can do to make you feel better mentally, but I can offer a couple of maybe concrete solutions.  If you are soaking the Guards, have you tried using a think pad inside them, as another barrier.  I used extra adsorbant pads for a while and they will soak up a lot of liquid.  Maybe this combo would allow you more time to get to the bathroom, and even only have to replace the inner pad.  Also, maybe the Guards aren't what you need- possiblity you would have better results wearing just one of the super-extra adsorbant pads like the Poise or Assurance brand pads.  These are more like a sanitary napkin, but really soaks up lots of liquid. 

Now, this one may get some response from some others, but this is only an option, not a recommendation.  In your  current state of mind, with the sense of failure and ddepression affecting your everyday life so deeply, maybe you need to discuss with your Doctor the possibilty of using a condom catheter.  Look them up on any search engine.  Basically an tight fitting condom with a line attached feeding urine to a collection bag strapped on the thigh.  Normally I wouldn't even mention it, instead recommedning you stay the course, let yourself heal, tell you it's too early to give up, etc.  But if your desperation, disgust, depression and self-blaming is affecting your everyday life so profoundly, then "maybe" you need something that would allow you to find a place to regain your sense of control and improved self image.  The condom catheter is a drastic step, signifying an admission of failure for most people.  Maybe you need it or some other to-be-recommended step to help you regain your confidence.  Others hopefully will have some less drastic alternative. 

I can tell you that I hear of men who, when they regained their continence, did so in a short period of time, seemingly overnight.  I pray this happens for you.

James C.

Hi there . . . our message is to perservere. At the three months post surgery Bob was still wearing a pad and needing to change it . . . . .not often but still leaking. By 6 months he was mostly dry. Now at 13 1/2 months he never thinks about it . . .is always dry . . . .and never ever gets up at night to go to the bathroom.

It really does occur gradually, in stages, and even when you think "this may be it" (us at 6 months) it still continues to get better. Until just recently when we went out and about it seemed Bob was making frequent trips to a bathroom . . . . now he doesn't thiink of it.

Good luck . . it WILL only get better.

;o) Linda & Bob

Hello loupdemer,

I wasn't one of the gifted & tallented ones either; it was 10 week before I was 98% dry. Then I wore a Serenity pad for another 2-3 weeks just in case. After a year and a half+ I can say that I'm dry, but most of all are the "0" PSAs (much more important).

I wish you good luck with your recovery, and a Happy Thanks Giving.

Glen

I wrote this today to send to my doctor so he could help others,you may have trouble believing it, but I feel like I just won the lottery.

How I used biofeedback to make a significant improvement to my severe incontinence.

I had my second Foley catheter removed 15 days after my Oct. 17, 2007 laparoscopic radical prostatectomy operation. (That’s another story). With the catheter removed, I was leaking 90 to 100 percent when standing or walking, about 50 to 80 percent when sitting but almost not at all when lying down. First thing in the morning, the only time I had anything in my bladder, I could start and stop the stream without problem with my Kegel muscles. During the day I couldn’t go much more than an hour on one large pad. The dripping frequency was about every 2 to 10 seconds. I also did Kegel exercises at least 5 times a day. After two weeks I hadn’t noticed any significant improvement.

After the first week, in my search for a solution on the internet, I found a reference to a biofeedback technique involving walking around a room holding a Styrofoam cup (with pants off) watching for and catching the drips and concentrating on stopping them. I thought that this had possibilities and I tried it about every other day for about a half hour each time. When it worked, I felt a heightened alert feeling similar to anticipating a tennis serve and I wasn’t holding my muscles nearly as tight as if I was doing Kegels. On a Wednesday, two weeks after having the catheter removed, I had it working pretty well but I would drip as soon as my mind wandered and its effect didn’t carry over when I stopped doing it. This time, to maintain my concentration, I began continuously repeating a mantra such as “don’t drip any more”, “don’t drip any more”. After another 10-15 minutes of this with the addition of the “mantra”, I had get dressed and go do some errands. I continued repeating the words to myself as I drove my car, filled my gas tank and then got something to eat before picking up my son at work. In that half hour I only dripped a half dozen times, usually when I lost concentration for a split second.

The next two days, I used only one medium size pad for each workday, repeating the mantra when I had to walk around (Admittedly this wasn’t too often because I have a sit-down job). That evening I washed dishes and did other busy work. I leaked more than I had during the day but if I gave the mantra more of an emphasis when I had to reach or bend down I could usually maintain control. By the weekend, I had maintained the lower rate of dripping even when I got lazy about repeating the mantra. I was physically busy doing yard work and hiking on a hilly trail. The pad became only about a quarter to a half full after several hours of this activity.

My conclusion on the following Monday morning is that this technique works great for very frequent dripping, but as the frequency became less I didn’t have as much motivation to maintain the constant concentration required. However, the less frequent dripping has become automatic for me and I don’t feel the need to repeat the “mantra” unless the dripping frequency increases. I still have a way to go, especially when doing physical activities, but I’ve made a huge improvement in a short time using this biofeedback technique. By the way, at work this morning at 11:00 am my pad feels dry and I haven’t had that unpleasant “oops” feeling yet.

I found the original reference at the prostate cancer forum link below, the “mantra” part was my improvement to the method;
www.healingwell.com/community/default.aspx?f=35&m=239259&p=3

Hey Loud, Just another voice of support here. I'm 13 months post op and still using 3-5 pads a day. One thing you might look at is have a physical therapist check to see how tight your hip area muscles are. My therapist thinks most of my problem may be that the tight muscles are keeping the pelvic floor muscles from pulling like they should. I know it get's discouraging at times, but you have to keep your spirits up. If all else fails there is the AUS (artificial urinary sphincter). It apperars to have great results. I am just holding off for a while longer to see if I can get mine back on my own.
You need to look at your ED also. Atleast it still works. The leaking can be controlled with a condom.

Good Luck,

KW