Prostate Cancer Support Group

OK, after lots of reading and research, here's my understanding of the incontinence situation many of us face after an RP. I'd really appreciate if anyone knowledgable on this topic could confirm or correct my understanding.

1. The smooth muscle internal bladder sphincter, which was (and remains) located at the bottom of the bladder just above the prostate, was responsible to automatically block leakage from the bladder. In its normal state it was fully closed. When we went to pee we had to intentionally relax that sphincter to let the stream start. During the RP surgery that internal sphincter was damaged and now does not get the job done as before. The degree of damage and hence the amount of incontinence varies from man to man. True continence will not return until that puppy heals enough to consistently do its job of involuntary control.

2. The second control device we're left with after the RP is the external urinary sphincter which was wrapped around the urethra just below the prostate. This was (and remains) a voluntary control device. When the prostate was cut out in the RP, the external urinary sphincter remained on the urethra and the urethra was sown onto the outlet of the bladder in a procedure called anastamosis. When we do kegels it is this sphincter muscle we are conditioning, and this sphincter is what we call upon for stress and urge incontinence. We essentially do a kegel to tighten this sphincter to prevent leakage when standing up, lifting heavy objects, sneezing, etc., and we will have to continue to rely on this voluntary sphincter until the internal bladder sphincter is back on line and doing its job. If ever.

I have no idea if my understanding is accurate so I'd be grateful for any feedback. Thanks, and blessings to all my fellow travelers on this journey to recovery.

~ Greywolf ~

RRP 9/8/2011

Thanks for the post Greywolf; I look forward to the discussion. I am only a month out from surgery, but am getting frustrated with the leakage, it is not as bad as other posts I read, but nonetheless annoying. Formyself, I am not surprised about the leaks as I was well informed going in, just learning to cope and looking for ways to reducing them. I do my Kegels as prescribed and wonder if there are other ways to exercise the muscle; I think there maybe some Yoga poses, but have not found them.

i have 17 day left before my sugery, what happens when they take out the catheter, do you know you are leaking or does it just leak? just thinking about this is unthinkable. dont know if i can handle this.

Paperplane

I understand your frustration with leaking. There is little you can do other than kegels. If you do too many you will cause fatigue and leak more rather than shorten the time before you regain control. I understand why you would want to hurry this process along, but you can't. It takes at minimum 3-4 months. So rather than look for some other thing you could do to hurry the process along I'm afraid learning to live the best you can with where you are is the best solution to your issue.

Elkhunter

There is no way to know what life is going to be like for you once they pull the catheter. Some men regain control almost immediately. Others such as myself go through 15 depends a day. For me, I simply dripped all the time. I didn't feel it nor was I aware of the constant leaking, so it was easy to stay in a depends too long, and end up leaking all over my clothing.

For me losing complete urinary control was extremely depressing and until I learned how to manage living with depends I needed to keep a set of spare dry clothing wherever I went. If you have an expensive mattress I suggest you get a protective pad to protect it from potential leaks at night.

It was a very tough 3 months until I regained control. The only thing you can do right now that might help is learn to do kegles and do about 6 sets of 10 kegels daily. Other than that, there's nothing else to do but wait and see where you land.

This is a great place to get support because you won't want to be discussing your loss of urinary control to friends who've never been there or struggled with this issue. You will learn to cope, and this unpleasant time will pass.

I found Depends to be the best fitting, longest lasting, with less leaks men's diaper then the many other brands I tried. The best price I found was Costco.

Post edited by: RickRed40, at: 10/29/2011 01:45 PM

thank you!!!

Elkhunter, to reiterate RickReds remarks everyone is different. I was doing my Kegels as soon as I decided on the surgery and still do them. After almost a month since surgery, I am lucky in that I only go through one to two Tena pads per day (found them online and at CVS); my leakage is minor and happens when I am exerting myself from sometimes getting up out of chair to walking, and then other times I can be dry for a quite a while. I get up twice a night to empty my bladder, but I don't wet the pad. Initially when my bladder got full as it happened when I slept, I had major muscle/bladder spasms; they are now subsiding. As Rickred says, I need to be patient, perhaps I have been overdoing the Kegels, I don't know. What keeps me optimistic and assists me dealing with all this is the fact that I probably won't die of prostate cancer; I saw my Dad go though this. He had his surgery too late and then it was over 25 years ago so the technology today is on what he had, we are the lucky ones. In my view if you are in your 50's, dealing with the cancer is the right approach. Good luck

Elkhunter- I hear your concerns and they are certainly valid. There are a lot of things to fear going into prostate surgery or radiation. For me, it got better after my operation; I knew exactly where I stood and could get on with my recovery. Here's my experience.

I'm nearly 2 months post-op and have consistently gone thru 2-3 pads/day since the first week. (I wear male pads from Walgreens; can't stand the thought of putting on a diaper!) They are not very wet, usually, when I change them. I've only leaked 2 times at night, I'm up once or twice/night to pee and except for those 2 times I stay perfectly dry while sleeping. I've had no muscle spasms.

My circumstances seem similar to Paperplane, in that I leak most when standing up and exerting, blowing my nose, etc. Except for the first day I am usually aware of when I'm leaking, and its not all that much.

They say along with kegels, brisk walking is also good rehab, so I take a 60 minute hike up a steep hill 2 or 3 times/week. I do that first thing in the morning before I've drank much and I stay pretty dry. Even if it doesn't help with leaking, I got back in shape quick and feel much better overall. I hope RickRed is right and that 3 or 4 months post-op there is real improvement; maybe I'll be back in control by then.

Once we're diagnosed with PC we are faced with a choice between awful alternatives, and our lives will likely never be the same. It is really a bad break for all of us but we have to make the best choice for our individual circumstanes, and then stick with it and not get full of regrets. Do I like having to wear a pad and be impotent...hell no! But I'm (evidently) cancer free, that's the big one and all the rest are just details. Good luck to you Elkhunter, Paperplane and RickRed.

Hope somebody will address my original post!

Greywolf

RRP 9/8/11

clean margins, SVs and lymph

Post edited by: azgreywolf, at: 10/30/2011 01:40 PM

it is amazing that a glad the size of a walnut could cause so much damage.

i know my prostate is coming out soom,but i have to ask. I will be impotent

but do you atleast still have the feelings of (dont know how to explain it)

being sexual, or is my penis dead to.

Elkhunter, first of all, you may not be completely impotent. At first, you will have no ability to get an erection while initial healing takes place. After that, it is entirely possible that you will regain at least some of that ability. Some men regain full functionality. It seems to me that most regain part of that, and a smaller precentage never get any of it back. Some of this has to do with how well the doctor is able to spare the vascular and nerve bundles along each side of the prostate, your own uniques physiology, and also your attitude. It's hard to maintain a positive attitude in the face of such a thing, but the more you can, the better you will do.

just to give you some perspective, I'm 53 and had my surgery at age 50. Two and a half years later, and I take Cialis every 3 days, and I can achieve about an 80-90% erection at the height of stimulation.

As for sensation, it's hard to gauge. I don't think I have as much feeling in my penis, but the difference is slight. Also, orgasm happens in the brain, so it's important to make sure you include all of the same "side" elements in your lovemaking that you did before to help reach a high level of stimulation, whether it's pillow talk, dirty pictures, foreplay, whatever.

Good luck with your surgery. Try to look past the short term and set a goal for where you want to be. Also, you might want to ask your doc about taking ED drugs immediately following, or even before, surgery to aid you in regaining sexul function.

Elkhunter

The great thing about this forum is that you can ask whatever is on your mind and someone will answer. Like most men you are worried about what sexuality is like after surgery. If both your nerve bundles can be spared you will at some point in time, based on what your current abilities are, have some function return. Some men are able to achieve erections weeks after the catheter is removed. Others and I suspect I'm in this category will not achieve an erection for 18-24 months post surgery.

Your penis isn't dead at any time. Most men don't know this, I certainly didn't, that you can have an orgasm without an erection. Orgasms post surgery are different. There is no ejaculate, it is a dry orgasm. Some find them less pleasurable, others the same, and a few more intense. Where you will land is unknown.

Your erectile abilities will not be the same post surgery. Many men find they will need ED medication to achieve a usable erection. In fact your Dr may prescribe one for you to take pre and post surgery.

If you are interested in preserving erectile functioning the best book available on this topic is by Dr. Mullhall called Saving Your Sex Life- A Guide for Men with Prostate Cancer

This is a link for his book

http://www.amazon.com/Saving-Your-Sex-Life-Prostate/dp/ 0980064961/ref=sr_1_1?ie=UTF8&qid=1320072710&sr=8-1

You can listen to him on Youtube:

http://www.youtube.com/watch?v=ie8NkOu2VNA

He is one of the pioneers of penile rehab and helping men regain their erectile abilities.