Incontinence Frustration: I'd like... - Prostate Cancer N...

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Incontinence Frustration

Tom19
Tom19
12 Replies

I'd like feedback from the group on incontinence and how they are dealing with it. It seems like I'm going through pads way too quickly and just moving causes leaks. I'm doing my Kegel exercises but I'm wondering does it get better, does it just take time? I'm only one week out from my surgery (Friday a week ago) so am I just expecting too much too soon? I had a robotic radical prostatectomy.

Any feedback and ideas would be appreciated.

Cheers,

Tom

12 Replies
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BobJensen

Yes. It takes time. Be patient. It will get better.

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julianc

Hi Tom, Most people recover well. I recovered slowly and after about 3 months reached a plateau of 2 pads a day. I kept doing the exercises with very minor improvements so had surgery after 2 years. I had a male sling fitted which has solved the leakage ( I get a little about once a month ). Its not perfect ... stream slow and fiddly to empty fully at end ... the only benefit of an RP is gushing like a race horse and that is gone! But on balance definately worth it .. so patience is the answer.

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RolandUK

Hi Tom

A week is far too short a time for continence to return .... it'll take your body about 4 to 6 weeks odd for post-op tissue swelling to decline and then recovery. Keep going with the Kegels ... every day ... and things will gradually improve. Also keep going on improving erection frequency... pretty much by any safe means possible.

Regards Roland J

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ernie8723

Tom,

I am less than 3 weeks out from my robotic RP and share your frustration. It seems that if I am sitting or lying down I leak very little but as soon as I try to get up it starts to gush out. I am doing the Kegels as described by the doctor and also the good people on this forum.

I live alone so I can keep a bottle by my side and empty before I rise which helps with the changing of pads. My doctor appeared to be a little surprised when during my 2 week appointment I told him I was totally incontinent and this has not helped my psychological healing. I feel like a freak. I'm trying to be patient and just hoping that improvement will be coming. I have also been second guessing my decision to get the RP but I imagine this might be normal.

I asked my doctor if I would consciously have to tighten my pelvic muscles to hold in the pee for the rest of my life. Thankfully he said once the muscles are strong enough it will not be necessary to tighten the muscles consciously.

Keep doing your exercises and be patient; there isn't much else we can do about our condition. Here's hoping we both recover are bodily functions and can begin to live a normal life again.

YOU ARE NOT ALONE!

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ng27868168

ernie8723, I just read your comment and must tell you I TOTALLY disagree with your saying "there isn't much else we can do about our condition"! Please read my response to Tom19. There ARE other options and a VERY GOOD option is the Artificial Urinary Sphincter! If you doctor doesn't know about this, time to change Urologists!

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Hidden
Hidden

Agree, it might seem like forever when you have this problem, but relatively speaking, very early days. I still had my catheter in at your stage!

That the leakage isn't so bad when you are sitting is a good sign. Gravity and position are a factor. Verticality is the worst relationship between posture, gravity and bladder function.

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ng27868168

I agree with those who said it takes time to recover from incontinence immediately following surgery. But just so you know, IF your incontinence continues to be more than you are wiling to tolerate, there are other options. One of the men responded that he had a Male Sling installed and it helped some. Following radical surgery 22 years ago and having virtually no or minor leakage, as I aged and some other health issues, I became almost completely incontinent to the point where pads were no longer a choice and going anywhere was a risk. I enquired about having a Sling installed and 2 urologists who I have dealt with, said Slings work much better for women than they do for men, and recommended I have an Artificial Urinary Sphincter (AUS) installed, which I did. Happy to say It basically solved the problem. No more pads, no more leakage. The AUS is inserted by a minor surgical procedure and basically works like a "hose clamp" around your urethra. (urine tube from bladder to penis) I highly recommend this product as it made my life MUCH better.

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ernie8723

Hi ng,

I should have said there is nothing you can do while healing from surgery. My doctor and I have discussed the options that are available if the incontinence did not resolve itself. My doctor did say to be patient and it should improve with time.

I have heard very good things about AUS and will certainly consider this option in the future. Thanks for the reply.

Stay well!

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ng27868168

ernie8723, good to hear you already know about the AUS. I am a facilitator for our local PCa group and know of several men who still have moderate incontinence even after the healing process is done, but for whatever reasons are either unwilling or afraid to go ahead and have the AUS procedure done. And I guess we all tend to make those types of decisions differently, and I understand. Good luck to you on your recovery. Life goes on.

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BobJensen

I wore my catheter for 4 weeks. Be patient.

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mcg2

Tom I am new to this page and posted before I read your's and have very similar symptoms. I had robotic prostatectomy the 30th of August so just over three weeks. I only had a catheter for a week. They took the staples out and the cath on the same post op visit. I do pretty well sitting and laying down. Very little leaking but standing and walking is not so good. It is more dribbling vs squirting now though. I can do kegals without problems. It doesn't seem to be doing much though. It has taken my very active life style of running three times a week down to not much walking to reduce the leaking. I am frustrated which is why I looked for a something like this group to get some information and support.

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speedyhaddock

You had a Surgeon performing the surgery to remove the cancer . Not a miracle worker In a perfect world all that would be required would be a band aid And back to climbing mountains & cycling ten miles daily Do get real Five days is no time the procedure probably took up to 4 hours ...

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