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Incontinence 4 months on

User
Posted 01 Jul 2019 at 07:11

My husband had his prostate removed in February. He  was doing ok but then got an infection when catheter was removed. 

We're 4 months on and he still gets leakage. Worse in pm/eve. He's really struggling with it as he feels it should be ok now. 

He had left nerve bundle removed but spared others. Also remove some of the neck of the uretha. 

He had T3a cancer.

Has anyone had similar and how long did it take you to get back to normal?

Thanks

Jane

 

User
Posted 01 Jul 2019 at 21:49

The stories on this forum seem to indicate that everyone is different. Anyone who is continent by 6 months is probably going to do all right, but if not there will be residual issues (though also take into account that some consultants will categorise as "continent" a patient who leaks slightly and still needs a thin pad).

My experience sounds similar to your husband's, but I'm about 3 years further down the line. Continence slowly improved over the months following the operation, but I still leak a bit. I just get on with life using a pad - in my case most days now I only need the one. Just the same as you describe leakage gets worse in the evening. In follow-up appointments the doctor seemed to focus on "stress incontinence", that is when there is leakage to accompany a straining activity (like lifting a heavy item); however my experience is not usually stress incontinence as such but rather that straining seems to make the sphincter get tired earlier and then leak more that evening. Problems get worse days I do quite a lot of gardening, or get a bad cough, or as yesterday go for a country walk over rough ground for several hours.

It would be nice to be pad-free but actually I can get on with life just putting on a pad in the morning, and having a spare available for the odd occasion it is needed. (And although it is not what you are asking about, it was important for quality of life that one nerve instead of two turned out to be adequate for a perfectly good - if different - continuing sexual relationship).

My fingers are crossed for your husband, but the main thing is to make the most of what you have.

User
Posted 03 Jul 2019 at 06:57
I'm 4 years down the line and I still get an occasional slight leak. Any sexual stimulation eg a cuddle or even holding hands can trigger it, especially if I have had a drink! It is never sufficient to cause embarrassment or require pads but it I have developed an automatic "clench" response that I seem to have learned. My wife and I even have a laugh about my needing to "clench" before any hanky panky kicks off!

So what's the answer - pelvic floor strengthening and working out your new limitations.

User
Posted 03 Jul 2019 at 13:09

2.5 years after removal then radiotherapy.
I never expected to be fully continent.
I still wear pads and assume I will for the rest of my life.
I leak perhaps two tablespoons full per day.
If I go for a walk, perhaps 4 - 7 miles, I expect to fill a pad and change part way through the walk.
I wouldn't dream of wearing just underpants.
Some people on here describe being back to normal.
I think they are the very lucky few.

User
Posted 04 Jul 2019 at 17:33
It is very early days for your husband. Have patience and keep up with the Kegel exercises. Things will eventually improve though as it has been said everyone is different. Good luck
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User
Posted 01 Jul 2019 at 21:49

The stories on this forum seem to indicate that everyone is different. Anyone who is continent by 6 months is probably going to do all right, but if not there will be residual issues (though also take into account that some consultants will categorise as "continent" a patient who leaks slightly and still needs a thin pad).

My experience sounds similar to your husband's, but I'm about 3 years further down the line. Continence slowly improved over the months following the operation, but I still leak a bit. I just get on with life using a pad - in my case most days now I only need the one. Just the same as you describe leakage gets worse in the evening. In follow-up appointments the doctor seemed to focus on "stress incontinence", that is when there is leakage to accompany a straining activity (like lifting a heavy item); however my experience is not usually stress incontinence as such but rather that straining seems to make the sphincter get tired earlier and then leak more that evening. Problems get worse days I do quite a lot of gardening, or get a bad cough, or as yesterday go for a country walk over rough ground for several hours.

It would be nice to be pad-free but actually I can get on with life just putting on a pad in the morning, and having a spare available for the odd occasion it is needed. (And although it is not what you are asking about, it was important for quality of life that one nerve instead of two turned out to be adequate for a perfectly good - if different - continuing sexual relationship).

My fingers are crossed for your husband, but the main thing is to make the most of what you have.

User
Posted 03 Jul 2019 at 06:57
I'm 4 years down the line and I still get an occasional slight leak. Any sexual stimulation eg a cuddle or even holding hands can trigger it, especially if I have had a drink! It is never sufficient to cause embarrassment or require pads but it I have developed an automatic "clench" response that I seem to have learned. My wife and I even have a laugh about my needing to "clench" before any hanky panky kicks off!

So what's the answer - pelvic floor strengthening and working out your new limitations.

User
Posted 03 Jul 2019 at 13:09

2.5 years after removal then radiotherapy.
I never expected to be fully continent.
I still wear pads and assume I will for the rest of my life.
I leak perhaps two tablespoons full per day.
If I go for a walk, perhaps 4 - 7 miles, I expect to fill a pad and change part way through the walk.
I wouldn't dream of wearing just underpants.
Some people on here describe being back to normal.
I think they are the very lucky few.

User
Posted 04 Jul 2019 at 17:33
It is very early days for your husband. Have patience and keep up with the Kegel exercises. Things will eventually improve though as it has been said everyone is different. Good luck
 
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