Incontinence after Radical Prostectomy

Keef / Richard

Keef I am assuming your PSA result is a typo and is 0.05 not 00.5. I am now 35 moths post RARP, I was almost dry 4 days after catheter removal which I put down to lots of PFEs both pre op and post op and of course the skill of the surgeon. I was dry for 17 months until a urethral op left me incontinent. I have regained my continence several times since, some I would put down to doing PFEs. I stopped doing PFEs and still regained my continence. 

We probably take for granted how complicated going for a wee actually is, there are signals going from the brain to the bladder and visa versa. The sphincter is also a complex organ with voluntary and involuntary muscles. A quick Google on urinating will bring up some informative articles on how things used to work. Daily sildenafil had a beneficial effect on regaining my incontinence, getting a daily dose may not be easy.

Have you considered trying to get the sheath system from your GP or incontinence nurse, it is a life changer?  Bladder training has been mentioned and knowing that I was not going to finish up with wet underwear or trousers gave me the confidence to hang on that bit longer. Some urologist do not like the sheath system as they think it makes you lazy, within a few weeks of using the sheath system I regained my continence on more than one occasion. When I got the urge to urinate I would get up and go to the loo stand there and fill the bag so keeping the routine as normal as possible. I took the advice of someone who said "stop thinking about being incontinent", it does help to be in right frame of mind. Of course if the mechanics are no longer working no amount of exercises or training is going to help. 

Thanks Chris

Edited by member 19 Mar 2017 at 18:17  | Reason: Not specified

I know I'm not alone, my cousins was the same.

someone I talked to who went to a continence clinic before the op ...... this is ideal, make sure you get advice as soon as possible.

This message isn't for the people on this thread, but those diagnosed and waiting for RP

Richard

Yes I had the Da Vinci robot for Radical P.

You and had the same operation, me a year later than you. I am OK during the day but not at night. I have spent a lot of time on-line looking at how it all fits together and from what I have read it goes something like this . . . we have an internal and an external sphincter that controls the flow. The internal sphincter is involuntary i.e. it is controlled by unconscious neural messages sent to the brain. The external sphincter is voluntary i.e. it is controlled by consciously opening or closing (pelvic floor exercises). Although the 'internal' sphincter is called 'internal' I can't establish if it is actually just inside the bladder or just outside the bladder? During the operation there is damage, the question is how much/what type. Clearly if both sphincters are cut out then there can be no control. I feel (in my body) as though my unconscious control has gone; it seems quite clear that whilst I am awake, I have good conscious control and when I am asleep I have poor/inconsistent control so I suspect that my 'internal sphincter' was cut out / damaged but how can that be if it is internal? I am seeing my surgeon next week and I will be asking him exactly what he cut out/cut through. Have you asked your surgeon these questions?

My incontinence now gets worse the more active I am, over night the leakage is slight, but going back to the weeks after the catheter was removed I did have a problem at night, I would wake up when I needed to pee,the problem was as I walked to the bathroom I would leak badly so there was not much left when I got to the toilet, it was so bad that I bought a urinal bottle - I was surprised how much I would pass - about a litre a night.

My thought is that over the next few weeks you will get back to normal, it's really early days for you.

On the question of why we have different results ...... most people seem to think it our age and the expertise of the surgeon, the man who did my op was very experienced, one of the first in the country to use the Da Vinci.

It was mentioned that my prostate was quite small, perhaps this made it a more difficult op

I don't really know, my consultant/surgeon said after the op that it went well and I wouldn't have a problem with incontinence.

I'm really stressed these days with anew product launch, perhaps this is the cause.

Richard

My OH is two years three months post op and has had a tortuous continence journey. He has done everything and a much slower than he expected. He's just got to a level where one level 1 pad will do in a day, and IT IS STILL IMPROVING! (Although it's s bit on hold atm as he's having salvage RT) Don't get disheartened and don't let them tell you it won't improve. It may well do.

The continence issues in his case have a lot to do with the physical nature of his job (he's a farmer). If he does very little, he leaks very little. As the surgeon said- if he had an office job, he'd be very happily continent with the odd dribble. Does this apply to you?

What was intensely distressing to him 12 months ago is easing off. He seems to have stopped worrying about it so much - what will be will be- and this seems to have coincided with improvements. Of course, he has had other things to worry about- a rising psa- so not all fun and games!

Try not to stress - I don't think it helps. It certainly isn't going to make you continent more quickly. See it as a journey.

I reluctantly start 33 sessions of RT tomorrow, my normal urge incontinence is only a few dribbles but my bladder capacity is normally only about 125 ml and 300ml at an absolute maximum normally overnight, how have you two coped with keeping a full bladder during RT.

Thanks Chris

I’ve had Botox injections into the bladder but so far they’ve made zero difference and I take anti-cholonergics.

I find it have to hold my pee in nearly all the time, or I’ll leak, and even then, I leak upon certain movements.

Frankly, to be 50 and incotinent is pretty soul destroying. It’s become a part of life and I have to be near a toilet at nearly all times.

Physiologically, it feels like there is literally nothing stopping the flow of urine. No sphincter etc

I’m guessing the only option at some point will be the AUS