Experience so far with NHS

[Walesiswet]

Hi all, I am new here so here we go.

So far i've been incontinent since Feb 2013 with wetting during the day and night with frequency between 15 and 22 times a day. It had taken a long time to work out that tena Maxi was working the best but i still have to use a terry and gary pants to bed to stops leaks. (Dont want to soak my wife).

I saw the doctor within 2 weeks but its probably been a couple of years I cut tea and coffee out during the day as that would make me pee for britain and with some real urgency. The wetting bit just got worse and worse so I knew I needed to wear something. Like many on here you start with the store brands and work your way through, learning as you go.

I was refereed to a continence nurse and also for a scan and urodynamics.

I took me 6 weeks to get a continence appointment and after phoning the hospital it will be another 6 weeks until I get a date for that, so mid August. I have now been supplied 3 months of Euron Super plus and also use a cath and bag during the day, all FINALY supplied through the NHS. I use the daipers in the evening as my wife finds the caths a little too medical looking and also it means we can easily keep our sex life together as diapers are easy to whip off.

I suppose the thing thats got me the most is the time it has taken to get any form of help or protection for a very serious problem. 6 months of wetting myself in the day and night. I worked out that i'd pee'd more the 130 gallons just in the night. I dont think they realize what damage that does to your bed and ceiling!

I've had liver and kidney tests, checks for UTI, Bladder scan, diabetes tests etc and so far they are 90% sure i have severe OAB wet. it feels like my bladder is pushing against my pelvic floor when i wet so they want to check pressures to make sure I'm not pushing wee up to my kidneys.

What a journey!

I'm only 34, I have a wonderful wife and 3 young kids. I NEVER thought this would happen to me. my wife jokes and says I bought it on myself. we're into latex and all manner of kink so being trapped in Diapers and condom caths is not too bad for us. I'm also mega lucky because since i started wearing 24/7 my wife has become a bit of a self confessed

[Zander]

First, keep in mind you'll have dramatically different experiences depending on where you live in the UK. Some NHS trusts are excellent at getting you seen by a specialist within a week, some are utterly crap and take months. Remember you can always ask for a referral to another trust which specialises in your condition.

[Walesiswet]

Thanks for the reply Zander, Unfortunately I'm in not in a position to afford health insurance as we are both self employed with 3 babies, my income is low. I have very helpful GP of whom I have a good relationship. I have been waiting some time as dont have any 'RED flags for cancer and other serious problems with my renal function. It just means i'm pushed to the back, which is ok. I'm not gonna die from wetting myself. There are other people far more in need of urgent care than myself. At this point i'm pretty sure they offer Botox but again don't see the point of having retension problems for a month and having to cath then back under in another 8 months or so. I suspect it will be a case of long term management, thats mine and my wifes feelings at the moment, that may change as time progresses.

[WakkoWannaBe]

Well, you seem pretty positive so that's good!

[Walesiswet]

hi Bedwetter, Yes we do use that phrase. "would you like a cup of tea?" "no thanks, it'll make me piss for britain" (or any area which you live,wales scotland etc)

And no, nothing devaluing. If you couldn't laugh you'd cry, which I have on many occasions. It's only been this last month that I have emotionally settled down and found the right products and routine that keep me comfortable and able to carry on my daily business. You have to adapt the way you dress a little too. The abena bodystocking is a god send but too hot here at the moment.

I still like a good drink though and that indeed does make me piss like mad. I fill a Tena Maxi in 2 hours.

[bigbabygee]

I am having trouble with the NHS myself but I am an adult baby and my condition puts me off wearing because you have to and wearing for fun is totally different for me.I have had bowel problems and surgery that leaves me sometimes bowel leaking,and urgency with peeing when standing up or sitting down,my GP has ignored this as I am waiting on another op in August to repair my bowel and remove a fistula.When I left hospital I had 2 bags which would leak,can put up with wet patches but not shit,I sometimes had to change the bedding a couple of times a night,in the end I used a nappy taped over the holes and changed when it started to come unstuck.The surgery nurse then come up with pads soakers and a large dressing which works for me,then as the weather got hotter the smell got to me and I now have a charcoal pad for the aroma,has worked great up until recently with the HOT weather.Can understand your despair myself have had counselling no help but I only recently lost my wife 18mths ago.Glad you have an understanding wife I too was very lucky as she played along with my AB self and would make or buy me my clothes so was a lucky baby.Got rid of all my clothes babywear gave it to a nanny in Portsmouth,she was the one on the TV I never had her babysit me I was mourning my wife and was having an extended stay in hospital and did not want people who accessed my home looking around.

[Walesiswet]

I'm so sorry for your loss, must be hard. I have not been there so I can't confess to "know what your going through" As for your experience I can only imagine it must be hell for you. Since my incontinence took hold I have had 2 bowel accidents. I have a bit of an urgency issue there but depends on what I eat. I also have a job which access to a loo is difficult. I was driving a few weeks ago and had the need to poo and after desperately trying to get home to change anyway, it hit me, i wasn't gonna make it. I soiled my diaper and was ashamed, pee is one thing but poo is messy smelly and seriously embarrassing. I think part of the problem is a continent person just cannot grasp the amount of liquid involved. I have said to the few people that know, take a 300ml jug of water and poor it on the floor, repeat this every 1/2 hour to an hour and you will quickly understand what a problem incontinence is. Plus poor 2L of water on your bed every night for a week and see how your matress copes, oh and ceiling!

In my opinion they should (depending on symptoms) hand you some pads first to cope, your not going to get cured over night. I even had to call up the clinic today to chase the order, If I hadn't have made the call id be waiting another 4 weeks for a delivery. "thats ok i'll just spend another £130 on diapers".

I think you also make a valid point about the hot weather. IT IS HELL! You have no choice but to wear, you have to cover up and god, try walking with 3 kids under 3 years old, wearing a diaper, onesie and normal clothes in this heat. I am sooooo greatfull the bag and cath stuff arrived a couple of weeks ago.

I wish you all the luck in controlling your bowel problems.

[Hookedondiapers]

. Plus poor 2L of water on your bed every night for a week and see how your matress copes, oh and ceiling!

Okay - I have to ask...

[Walesiswet]

well if i sleep upstairs and pee between 1-2L every night I would think if I didn't wear protection it would soak through the matress and bed, then the floor and the ceiling downstairs. sorry didn't make myself clear on which ceiling.

[Hookedondiapers]

well if i sleep upstairs and pee between 1-2L every night I would think if I didn't wear protection it would soak through the matress and bed, then the floor and the ceiling downstairs. sorry didn't make myself clear on which ceiling.

I thought you might be trying to impress us with your bladder pressure or something else.

[diapertime42]

I thought you might be trying to impress us with your bladder pressure or something else.

That was my thought.... I was thinking "Wow, does this guy have a good stream or what!?!?!"

[Walesiswet]

A good stream? I think I'd be leaking like crazy. I have not had the urodynamics done yet as they want to make sure there is no risk of back flow to the kidneys. I suspect its not a problem though as you can feel the bladder gently pushing against the pelvic floor then.......woosh!