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Incontinence 1 year on after a radical prostatectomy

User
Posted 15 Nov 2015 at 18:50

Originally Posted by: Online Community Member

Roger 46,

I had an RP in May 2014, I'm still leaking, the medical experts tell me its perfectly normal ! ... I hope there right

however I've noticed one thing that makes leakage even worse is when I take Cialis, 



That's an interesting comment  titanic!

My continence appears to improve after taking cialis!!


Edited by member 15 Nov 2015 at 18:52  | Reason: Not specified

User
Posted 16 Nov 2015 at 19:44
My OH had a test to see how strong his pelvic muscles were. Very good apparently. But still he leaks. However, his foes seem to relate to physical exercise and how much he has done.

He also tried the bladder retraining thing. He tends to do this when he's driving. One more service station is the post prostatectomy version of Russian Roulette

User
Posted 27 Feb 2016 at 16:20

I saw the consultant yesterday and was offered the possibility of further surgery (artificial sphincter or sling). I'm definitely going to go for one or the other. And I feel much better having made the decision!

Roger

User
Posted 27 Feb 2016 at 16:37

Originally Posted by: Online Community Member

I saw the consultant yesterday and was offered the possibility of further surgery (artificial sphincter or sling). I'm definitely going to go for one or the other. And I feel much better having made the decision!

Roger



Good luck Roger,

Please keep us all posted on your decision / progress.... 

I for one will be very interested in how things turn out for you as I still suffer from leakage at 20 months post op.

I was offered a referral for investigation into suitability for similar treatment.

At the moment I'm holding back for the time being in the ( perhaps optimistic ) hope that things will improve further in the year ahead..

Luther

User
Posted 27 Feb 2016 at 17:43
Just in case anyone has not seen my diary of experience with a sling and subsequently an AUS, it can be found here .
Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User
Posted 27 Feb 2016 at 17:52
R

I was dry 4 days post catheter after RARP but lost my continence following a series of ops that finished early Nov 2015, I was leaking between 40 and 200 ml a day. I went onto the sheath system for a few weeks and this seemed to help with bladder training. The leaks gradually dropped to about 10 ml at which point I decided enough was enough and I would no longer be incontinent. I am now at about 3 ml a day,at 40ml a day my consultant offered sling or AUS. I see him again this week four weeks from last seeing him. This week I got his report following cystoscopy saying the sphincter was inoperative so not sure how I can manage to stop urinating, has it just recovered ?Someone on here mentioned mind traing for bladder control so I guess that is what I have been doing.

Hope all goes well whichever route you take.

Thanks Chris

User
Posted 26 Sep 2017 at 19:58

There's some great responses and advice in here.
I'm 10 months on from Radical Protastectomy, then hormone therapy and radiotherapy.
I still leak - and typically change my smallish pad once a day.
Does anyone else have the biggest problem I have? Urgency and frequency...without a doubt more of a problem than it was before I had my prostate removed! I'm taking Oxybutinin 3 times daily for it and that helps, but it's still a major problem.
I would say I feel the need to use the toilet to pee every 30 mins.
Does anyone else suffer this? It's pretty debilitating to be honest, especially at work. And I can't hold it sometimes. When I need to go I REALLY need to go.

User
Posted 26 Sep 2017 at 21:55

It sounds like you might benefit from bladder retraining. Some men find that the message from their bladder to their brain gets messed up after PCa treatment so that the brain believes the bladder is full when it isn't. Alternatively, you are suffering urinary retention and not emptying properly, or you could have an over-active bladder as a result of RT. There could even be a bit of infection lingering. Ask for a referral to your local incontinence service or - if there isn't one in your area - back to urology. They may put you through some urodynamics tests and scan you to see how much you are retaining in your bladder after weeing and can then advise you from there.

Edited by member 26 Sep 2017 at 21:58  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Sep 2017 at 10:38
Hi,

I too had the problem after surgery and struggled to hold it but sometimes there was no holding it back. Did my pelvic floor exercises but still had the problem. Went for a scope and they found a couple of clips left over from the Surgery which were irritating the uretha, once removed the problem also went away. Although I still feel the need to go when the bladder ain't full but this is getting better as time goes by.

Cheers

User
Posted 29 Sep 2017 at 00:37

Hi Colin

Have you questioned why you are taking  Oxybutinin ? Are you dry at night completely ?

I agree with Lynn, ask for uriflow tests.   Are you actually emptying ? - ie easy to do yourself, flow etc .. just time flow into container.

Just looking at what you have posted.  Every half hour ? > 20 times a day ?  (20 x 100ml = 2 litres) Are you drinking a lot of caffeine ?

I have been lucky, full control (better flow than before op)

Average day will be : dry at night (8hrs ish)     5 - 7 times a day (I empty about 300 ml max in about 20 seconds)

Flow rate is around 10 ml per sec as you age over 60+,  bladder 250 - 350 ml ish - you can do the maths to empty

 (probably >20ml per sec as a teenager !).  I've never measured total volume in 24 hrs, it should I understand be around 1500 - 2000ml.

I have noticed I do however get the the urge to go (and still do) a lot earlier than I used to (which I ignore). 

I hope you are sorted ...    some simple tests should give you an idea on how much your urethra is passing, it should help to diagnose what exactly may be happening.  ie in my opinion , get some metrics.      

Regards

Gordon

 

User
Posted 29 Sep 2017 at 15:44
Colin

As already suggested testing and training are the way to go.

You might want to look into the side effects of oxybutynin in elderly patients, I am guessing from your username you might be 68. There are studies that oxybutynin has an effect on cognitive behaviour. I changed to solifenacin. I don't think either of them really had the desired effect.

As regards the urgency and frequency I am in the same situation as yourself. I do have a super pubic Catheter to complicate matters. My RT staff are saying my problems are caused by the Catheter, previous SPC have never caused capacity problems. My urologist says it is the effects of RT. My bladder capacity seems to have shrunk to around 100 ml since the RT finished 4 months ago. It has also been suggested that the RT has caused scarring to the bladder and reduced the capacity. Whilst in bed or lying down my urge to urinate is quite low, as soon as I get up the urge is at 100 percent. Even filling a drinking bottle or having a small drink of have water I sometimes instantly leak urine or blood and urine.

Like Sanders I have had issues with migration of clips from the surgery.

How much urine are you actually passing when you urinate.

It might be helpful to give details and timelines of your treatment in you profile.

Thanks Chris

User
Posted 11 Oct 2017 at 15:54

Hi Guys and Gals,

Firstly may I say how much relief and help I have found from the posts on this topic, in particular knowing that I am not the only sufferer trying to understand all possible healing options, whilst getting on and enjoying life.

I am 72 and had a RP in June 2017, only four months ago, and I'm hopeful that my aggressive cancer has been stopped in its tracks. Time will of course tell. I am however suffering from incontinence - a constant flow during the day but thankfully dry overnight. I am doing my Kegel exercises and several times a day am trying to hold tight my bladder for as long as possible. But the moment I relax the flow starts. I wear incontinence pants, and use a DribbleStop clamp whilst out and about. I can live with this inconvenience (if you'll pardon the pun), but would really like to find a way of solving the problem on a permanent basis, perhaps in time an AS?

What I fail to understand is why when flat on my back or indeed sitting my bladder fills and I can eventually feel the urge the moment I stand up the flow begins and the bladder fails to fill. Gravity? At least with the clamp the bladder does fill and the urge eventually comes.

Any suggestions would be extremely gratefully received.

Jim

User
Posted 11 Oct 2017 at 17:25

Hi Jim

Yes, my experiences almost exactly.  If it's any consolation, at about the four-five month threshold, I regained a little bladder control, enough to make it to the bathroom, or from the car to the gents in a motorway service area but no more.  Probably it is a little early to start thinking about an AUS - try other non-surgical solutions first.  I found a Conveen sheath and bag was unobtrusive and convenient (and available on prescription - free in Wales), and despite assertions that it would make me lazy and slow recovery, it didn't (or at least, didn't make me any worse). The DribbleStop was ok-ish, but I was worried it might be causing permanent tissue damage so I didn't use it too much.

Just in case you do head for an AUS, the diary of my experiences is here : Diary of AUS Experiences

Hope this helps!

 

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User
Posted 06 Nov 2017 at 10:53

Hi Tony,

Thank you so much for your comments and suggestions. I will follow up on the Conveen sheath and bag. I will also try to be patient and continue with the exercises, whilst researching an AUS. Thank you also for the link to your AUS Experiences.

Wishing you well.

Jim

User
Posted 06 Nov 2017 at 13:47
Hi Jim

Just a note to say that I used the Conveen sheath and bag and it made a huge difference when going out. No pads to change and a great feeling of freedom and comfort.

All the best

Kevan

User
Posted 17 May 2018 at 19:25
Im approx 18 months post surgery and am still incontinent. I think the hormone therapy is probably making me depressed too.

I’m waiting to see the Consultant urologist again to discuss further surgery eg. An AUS, as something has to happen.

Without a doubt, before a protastectomy, no way are you REALLY told how incontinent you could become and for how long.And im only 49.

User
Posted 28 May 2018 at 11:26

I had urodynamic test approx a couple of months ago and found out I was filling my bladder and voiding it ‘normally’. This was approx 12 months following robotic protastectomy. But so what really? Now a couple of months later, I am still incontinent, suffering what seems to be ‘gravitational incontinence’. As soon as I stand up and start walking about, gravity takes hold and I pee. If anything, it’s gotten worse and it doesn’t seem to matter what I drink. Caffeine doesn’t seem to make the incontinence worse, but it does make my bladder feel more irritated.

I’ve spoken again with my prostate cancer specialist nurse and she has said if things arent right now, they probably won’t be and that surgery will probably be needed. So I’m waiting to see the urologist again, to discuss this further. 

I’m so thankful my cancer is under control but the incontinence Has been and continues to be pretty horrible really. And I’m 49.

I’m hoping surgery sorts it.

User
Posted 28 May 2018 at 22:42
I am in exactly the same situation as you and I’m 4 years past open surgery and just one and a half years past salvage radiotherapy.

I still wear one pad per day and leak around a teaspoon on a good day if I have not been very active to 4 to 8 teaspoon fulls if I am active doing DIY or cutting the grass etc. I have tried going without a pad, but it catches me out unexpectedly so need to wear one just in case as it is usually wet by the end of the day. It’s fine without a pad overnight. I have got into the habit of recording the weight of yesterday’s pad each morning to keep tabs on the amount I’m leaking.

I now have undetectable PSA, long may that continue, and can cope with wearing a pad each day, but my concern is that when I get older, I am now 70, general muscle weakness will make it worse. I have just completed a urodynamics study and am awaiting the results, but the nurse said it was normal and she advised I should stop taking over-active bladder medication. I was advised by my urologist to take Betmiga over a year ago and it was making no difference at all. As you say it is purely down to walking and being active that causes the leakage. I might ask for a camera inspection of the bladder/urethra junction, but not sure if I want surgery to implant any mechanical device that could fail in time.

User
Posted 28 May 2018 at 22:44
Have either of you tried a Conveen sheath or Dribblestop?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 May 2018 at 23:09
No Lyn I never have. I have thought of putting a peg on it occasionally (joke), but have not heard of a dribble-stop. Are they freely available and would one replace the need for a pad?
 
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