Incontinence after Radical Prostectomy

The advice I had before Radical Prostectomy was to expect incontinence for 6 months, the two people I know that had RP were nearly dry at 6 months.

I seen myself consultant last week, I was disappointed he suggested surgery - I'm really stressed with a business I started and am concerned about the recovery time.

I feel I am making progress, it seem I was more effected than most that have RP.

After catheter removal I was getting through 5 level 4 pants a day, each take over half a pint, I would feel the need to pee but it would have passed to the pants by the time I got to the loo, at 5 weeks I arranged to meet a friend in town, I put on new pants, after parking I walked 5 minutes to buy more pant, on my return to the car the pants were full - I had to take supplies every time I went out any ways always worried about having an accident !

I asked my consultant if stress and the cold weather could be making matters worse, and he agreed it could, we will put off a decision on surgery, I will have another consultation in three months.

I am still doing the pelvic floor exercises at least 4 times a day, after seeing a physio 6 months ago I'm sure correctly.

I have a small pad at night and don't soil much, but have to use the loo at least 3 times.

I was prescribed Duloxetine 20mg they didn't help and after six weeks stopped taking as they made me very tired.

I would welcome others experience - a google search show some people getting dry without surgery after 18 - 24 months

Thanks for your message, I'll check out the app you suggested.

It's really good to hear how others are effected.

Best wishes

Richard

Thank you for sharing, You have really been through it, hoping more than ever the PFE work.

It was good to learn that the end result was good.

Best wishes

Richard

Hi Paul

Many thanks for heads up re. App.

Very useful. Used it this morning. I realise I major on quick type and not endurance. .so will use this from now . Should improve ED more. I was very fortunate, expected incontinence and was fully briefed, yet another pun appears from no where

Back to the issue. I was dry. Whether catheter being in only 7 days helped.

Thanks

Hi Richard,

you are not alone my friend, im 22 months post op and still leaking like a chive, done all the exercises nearly an Olympian in them but no joy. No leakage at night or sitting, as soon as im up and about i get that nice warm feeling!!!!

The hospital are talking operation now......not keen. Just keep doing the exercises, you never know they may kick in,

All the best

Johny

Hi Jonny,
sorry to hear you are still leaking after 22 months, I remember what it was like when my catheter was removed I had no control and it really got me down but after 4 weeks was getting better, I am now 6 months post OP and I am 98% dry just a few small drips and dribbles, I think the Prostate Aerobics APP helped a lot you can download it free if you have a Android phone, As there is so much difference in recovery between each OP I am convinced it is down to the experience of the surgeon and a healthy slice of luck as some men on this site were dry from the start, very lucky if you were one of them, hope you get better soon, try the APP, by the way I don't have caffeine in tea or coffee and like a Bacardi and coke but I have caffeine free Pepsi, don't know if that helps, I hope things improve soon,
best wishes
Paul

Hi Keef

I know exactly what you mean about the leakage getting you down. For me, part of the trouble was being surrounded on this forum by incredibly brave men grinding through radiation and hormone therapies, sometimes still with PSA scores in the hundreds or even thousands. My prostate cancer was just a "blip"; about nine months from diagnosis to removal. My prostate was left in Birmingham and since then, thank goodness, I have been clear of cancer. And yet, here I was making a fuss about incontinence; I kept telling myself that I was lucky to be alive, but still ended up in a fairly dark place. For a while, the sling gave me a lot of hope, but on reflection, my incontinence was just a bit too bad for it and I was too pig headed to realise the fact.

The pain level was pretty low after the sling operation. The worst bit was the wind on the night after the operation, cleared by being able to lie on my left side after all the wires and pipes had been disconnected....

Sorry, but in my previous post above I wrote "Keef" instead of Tony.

Obviously my question was for Tony.

Have all of you a nice Sunday,

Lola.

Hi Lola

The original Gleeson score was from the residue of my TURP operation, the second was after the LRP presumably based on the remainder of the prostate. I think the bad stuff must have been in the centre where the TURP excavated and the not quite so bad stuff was nearer the edge. Hope this helps!

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 17:17  | 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

Thanks for the info, they got me on the machine, lined me up then decided to consult the onco about the RT hitting the Catheter port. By the time they had set my up for a second time and done the treatment I was bursting,the advantage of having the Catheter was a quick flick of the tap and instant relief.

Being as i don't like veg, sticking to the diet should​ be okay.

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