www.incontinentsupport.org

Hi all.

Apologies in advance for the length of this!

I've been lurking on here for a while but only just thought to sign up. I guess I hoped my problems would go so soon there was no point signing up!

I have a lot of undiagnosed health problems. Whatever I have is pretty 'MS-like' but since I've had a clear MRI I've been told that I 100% don't have it. I know that MRI is not 100% conclusive and along with my most recent relapse or attack which caused this incontinence, I think I have grounds to believe this needs disputing.

I've had continence problems for 2 months now. Before then, I had frequency and urgency problems. I had a lot of times where I was pretty sure I wouldn't make it. Had I not have been using a wheelchair (so being able to stay still apart from a joystick) I'm pretty sure I wouldn't have made it several times. I also kept finding dampness in my pants.

2 months ago I came home and got a quick urge to use the toilet. I figured I'd not long gone and it was yet another false urge so ignored it for a few minutes, headed to the toilet and wet myself on the way with a few painful bladder spasms. I think I knew this wasn't going to be a one off some how.

I woke up the next day, got out of bed and wet myself again. By the evening I was having painful spasms every few minutes with burning every time I peed. I got no sleep. It was totally exhausting. I kept having to change my clothes and ended up with my wet room being full of clothes, towels and sheets. As soon as the shops opened, I put on black trousers, sat on a load of towels and head out to the shops to buy incontinence supplies. It was humiliating. I've never been so glad to be a wheelchair user!

I got put on antibiotics after going to a walk in clinic thinking I had a UTI. The spasms were so strong and painful at first that I would sometimes fall to the floor (at this point I was mostly walking around indoors) and also soiled myself a few times. I thought maybe there were some IBS issues going on too so started taking bucospan at the top dose. I later found out that this can also be prescribed for bladder spasms.

During this time I also suddenly lost the ability to walk completely for a week. I've since built up more strength but am needing to use my wheelchair a lot more. Spasticity from the early days of my illness seems to have increased. I've had a urine culture come back clear.

I managed with the pads you can get in the shops (in the uk you can't seem to get nappy/diapers in chemists) but this just meant I only needed to change my clothes 2 or 3 times a day rather than 10. I kept thinking “it will go away soon” but eventually bit the bullet and bought some more specialist things online. I'm currently trying to work out what products work best. I've found tena pants super to work well for me but they only reliably hold one wetting. Anything more and I'm risking a leak. I'm avoiding the nappy style. I can't get them done up properly unless I lie down, and that just makes me feel like a baby and is not practical while out. I have some less absorbent pads for when things are going a bit better but if the tides change then I soak myself. I find this pretty degrading. I will keep trying things.

So now I'm having much less painful spasms but still having several 'accidents' a day. Sometimes it spasms and sometimes it just pours out. It most often happens when I stand up, shortly after going to the toilet (about half an hour) or if I am lying quite relaxed. I don't get the whole “sudden urge without making it” thing very often. Instead I get the sensation that it is at the bottom of my urethra (sorry for the graphic details) about to pour out or feel my bladder tensing up. I can't seem to stop the flow very easily.

My bowel problems are less severe...I think...I don't know. The percentage of times I soil myself is probably about the same but since that's a lot less times, I don't think about it as much. That's purely an urge and not make it thing. When my walking problems were really bad I had numbness so couldn't feel I needed to go.

I have an appointment with a continence nurse tomorrow. I suspect I have some urgency and some overflow. It probably sounds bad but currently them finding out I'm retaining sounds like a good thing. Then I would get catheters and could reduce the amounts of times I wet myself fully – although I accept that I'd likely still need [a lower] level of protection.

Hopefully they'll run the relevant tests.

I was debating whether or not to mention this but have decided to since I'm here for support: I'm a female to male transsexual (Please call me 'he'). I look like a guy – no one would know my past by looking or talking to me. However, this means my urinary system is female. Incontinence is one of those lovely parts of medicine where you can't help but be gendered and it's a bit of a headfuck really. Whilst I have the benefit of being able to go and buy 'tena lady' (not that those are strong enough!) without the staff thinking it's for me, I also have to disclose to medical professionals at some point. The thought of an invasive procedure which will most probably happen tomorrow (if they do their job correctly) is quite frankly making me shit myself with fear (if you pardon the analogy!). Still, needs must and whilst it's going to make me feel pretty emotional, I'd prefer the chance of being fixed.

tangerine,
It does not make any difference what sex you are or were. You have a problem and you've come to the right place for help. Thanks for joining our forum. Good luck with your appointment with the incontinent nurse. They should be able to offer some help. That's their job! .....Paul Martin

Thanks Paul.

The appointment was ok.

She didn't examine me but did a bladder scan. Strangely, she could not find any fluid in there. This led her to believe I was empty even though I kept saying that actually I needed the toilet. She got me to go in to a jug instead and it was 100ml...not sure why she couldn't find that on the scanner. She said it was working fine in the morning, checked in the male place and the female too!

Did a dip stick test in the urine and found high protein levels so have to chase that up with docs. Strange how the docs told me my urine was fine...clearly they only checked for infection.

She started talking about giving me pads. I asked her how much the one she was giving me held. She said 600ml. I told her that was not enough, that at points I've had a 2.5L pad on and still managed to leak through it in one wetting. she offered another - 900ml, I repeated about the leaking through a large pad. I can go over a litre in one go. After she heard that this most often happened shortly (about half an hour) after going to the toilet she suggested self catheterisation so I have to go back to be taught next week.

I went home with a load of leaflets with the words WOMAN all over them. Not exactly what I need right now, but at least I can be rest assured that the catheter will fit in my hand bag lol (yes, the booklet actually said that....bit of an assumption even if the reader is a woman)

I know catheterisation could be a positive way of getting dry (or dryer) but it was still overwhelming hearing someone else say it. I know it's no different to a wheelchair or a walking stick or whatever...just an aid to get me through but as it refers to something so personal I guess it feels a bigger deal.

Did not think that at 22 I would ever need a tube of plastic or nappy in order to deal with my bodily functions.

Oh well, life moves on.

Hello Tangerine, welcome to the forum, I am sure you will find some knowledge and support here, many good people with great advice on how to manage life with incontinence. Sounds like you certainly have some medical issues going on, I hope you can get some answers to them from the specialists you will be seeing, or have already seen. There are so many causes, it is sometimes very difficult ot not even possible to come up with a reason this happens, sometimes it just does! Finding the right level of protection is tricky, I only go around 250-300 mls per void, a litre I could't imagine! I start getting serious urgency at a much lower amount, but we are all different in that area too. I feel the same way that at 43, I should not have this issue, but it happens to all age groups for sure. Enjoy your stay, and feel free to ask any questions you may have, most times someone on this forum has the right answer! Puffy

Welcome Tangerine. This forum is a great place to get support and to help give support to a world-wide incon community. There are forum members here with many years of experience in managing all levels of incontinence. I know they have helped me many times with sound advice, suggestions and support. More than once members here have been able to pull me off of my pity potty and help give me a better perspective on dealing with being incontinent. I know that in part they have helped me from becoming an incontinent recluse. With their help I have learned to get back into society. I even managed to meet the most loving woman two years ago and will make her my wife this coming September.