No bladder control

Have to say I'm a tad sceptical of the official figures for urinary continence (UI) following a RP. All but one of the six men I know who've had a RP have complained of lasting UI since their RP. I seem to recall that you are not classed as suffering UI if after twelve months you are using less than two pads per day. One friend of mine who had a RP about a decade ago never stops complaining at having to use a pad whenever he goes out. He tells me his average leakage is around 5ml/day but can go up to about 50ml on occasion.

Another ia happy now but only because after suffering heavy UI for years post RP he was fitted with the sling and has now been dry for three/four years since. Yet another friend who is sadly no longer with us could never come to terms with his UI problem. There are others who I know of that continue to suffer, and like I said, just the one who was dry relatively quickly.

For myself I had a RARP and RT a dozen years ago and have neve stopped leaking since. I have changed my lifestyle in order to do everything I can to reduce it, eg eliminating all known dietary triggers (alcohol, fizzy drinks, tea, coffee, dairy products, tomatoes, etc), keeping fit, keeping my weight comfortably within recommended gudelines, doing pelvic floor exercises assiduously etc. I have tried several drugs, eg Oxybutynin, Tolteradine, Mirabegron, each of which produced improvements for a while but had to be discontinued because of serious side effects such as heart problems, sleeplessness, etc.

As for medical interventions such as the sling and sacral nerve stimulation, I was advised because of the effects of radiation these were probably too risky. On top of which a bad experience two years ago invovling a rigid cystoscopy to remove what turned out to be a phantom tumour in my bladder that immediately resulted in a tenfold worsening of my UI (up from around 20ml/day prior to the procedure to 200ml/day ever since) has left me resolved never to have any further interventions unless they are totally unavoidable.

Now, having said all that, I wouldn't want anyone to think I lead a miserable existence. Quite the contrary, I have never been happier! I enjoy my current lifestyle immensely and have learnt to live with all the inconveniences of UI. They are as nothing compared with what many have to put up with.

As we PCa sufferers all agree, life is to be enjoyed to the full, every single minute of every single day, and that is what I mean to keep doing no matter what life throws at me.

Whahey!!!

Edited by member 27 Jul 2021 at 23:24  | Reason: Not specified

Trev 

I was almost dry a few days after catheter removal, but further treatments meant I had to regain my continence numerous times. After one treatment I would drop 150ml in one go.  I would put a pad in my snug underwear, stand in the shower and see what happened, it gave me the confidence to get out and about. 

Google "continence service your town". You may find that you can self refer without the need to see your doctor. It is a bit of a post Cade lottery where gets free pads. You could try your urology nurse if you have one.

If you can get referred they usually want a 3 day water works diary,there are plenty on the internet. Keep a record of fluid intake and urine output. If you weigh a wet pad and subtract the weight of a dry pad you can work out the rough volume of urine. E.g 150g equals 150mls. 

Can you stop your flow of urine, don't do it too often the urology staff don't recommend it ? Stopping the flow shows you are using the right muscles and the mechanics are working. Bits of scab and debris could be keeping your remaining sphincter open, you have been bashed about.

Others members often mention looking out for offers on pads. I have always been supplied with Tena pads and found them okay.

It is early days but it does sound pretty severe.

Thanks Chris

Hopefully should settle as very much early days. The prof told me that it’s likely the urinary sphincter it held slightly open under tension from the stitches. They soften after ~5 weeks. At which point there should be noticeable improvement. With me it was almost like clockwork as at 5weeks I became totally dry. Albeit the odd leak from a cough, sneeze or barrel of beer.

Additionally the scar tissue softens and heals over the following ~12 months so things should further improve.

Lyn’s point ref brain remapping is very much on point. The changes take time to be relearnt and your neural pathways need to adapt to the new configuration.

Edited by member 10 Jul 2021 at 12:01  | Reason: Not specified

Hi Trev

In the same boat here today.  Just come home after catheter out like Niagra falls.  Have things improved since your last post?

Regards John

"my experience so far seems worse that the average man (I've got from speaking to people)"

This is not right Trev - I would say you are more or less where the vast majority of men are 6 weeks post op. There are a few that find they are dry the minute the catheter is removed but for most, it starts to improve between the 6 and 12 week stage. Statistically, if you are on one pad per day or less by 6 month mark, you are in the lucky 50%!

Edited by member 26 Jul 2021 at 23:44  | Reason: Not specified

Trev,

Stop worrying about things, until you get there. Yes at the moment you have serious incontinence problems, but nothing unusual, hopefully your brain will start to work out what signals it has to send to stop you peeing yourself. Give yourself time to recover from this operation. 

Edited by member 27 Jul 2021 at 12:54  | Reason: Not specified

Just to post something a little more hopeful...

I had my partial nerve sparing RARP 16 months ago at the age of 68.

I've had some issues since that point with incontinence - the most general problem is having an urge to pee, even though my bladder isn't full. I have some control over that urge, but sometimes it gets too much and I have to dash to the loo. I've had two small accidents at night, which I can only explain by dreaming I was having a pee. I've had about half a dozen dashing to the loo after a walk and getting a severe urge as my key went in the door. I also had a small dribble roughly every other day.

Nurse put me on some Toltorodine but they didn't do much and the surgeon suggested I try some diet changes instead, I now have one decaf tea for breakfast and the rest of the time I drink herbal tea with no citrus (I used to drink Lemon teas a lot, but no more). This has actually seemed to help, but also it has got better over time. I find that drinking wine is no problem, but beer guarantees numerous visits unless it's a very hot day. No more dribbles and no more accidents for the last couple of months, so definite progress.

As I used to get urges due to increased prostrate size, I have been used to coping with the need to pee, and I've continued my coping patterns - don't drink too much liquid before going out, have a pee before I go and be aware of public loo locations. There are also a few well-watered bushes on my country walks.

You're obviously worse than I ever was, but there is hope things will improve and I would try whatever suggestions your medical team offer.