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Hi
I have been following your site since April 2014 when I was diagnosed with RRMS after what I thought was a stroke. I’m a 32yo female. Since that time, I have had several relapses and tried a few different meds which didn’t agree with me (with the second one leaving me bed ridden for a week). My last relapse was in June. I developed severe vertigo (which I still haven’t fully recovered from) and complete numbness down my right side and had to go into hospital for IV steroids after I refused to take them orally again. On the plus side that led me to start fingolimod which I have found gives me no issues. I am on a number of symptomatic meds…some work, some don’t.

Mobility comes and goes and I’ve had to reduce my hours at work as I kept falling asleep at home suddenly and no one could wake me until I was ready to come out of it.

I have a really good doctor and ms nurse who I can contact at any time. I’m not one to tell people what’s going on or complain if I experience something different and will only really say something if they ask.

My biggest issue and annoyance at the moment (in addition with having to deal with the random other stuff) currently is constipation with the odd accident (like at a bus stop, just before getting on the bus) and bladder issues. I go from not being able to pass urine to just utterly wetting myself (most recently on New Year’s Eve in front of my mother) The urologists want me to self catherise, which I can’t bring myself to do.

It’s always nice to read that people just deal what is dealt to them on a regular basis and just try to get on with it. And that I’m not the only one who gets the most random symptoms and how you deal with them x

hi mrs PinB

you’ve really had a fast induction to our club!

personally i found continence issues to be the most upsetting.

the loss of dignity really hurts.

however self catheterisation isn’t that bad and when you KNOW that your bladder is completely empty, you can go out with confidence.

i really struggled to find my urethra at first but i eventually found it.

give it a try,

good luck

carole x

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Hiya

Like Carole says self catherisation isn’t that bad once you have had a few practises. I took a while and the mirror thing didn’t work for me. I could only find the right bit by actually feeling where the water ws coming from (sorry if too much info). I was then able to self catheterise without any probs and like Carole says you can do a whole lot more without the worry of leaking once you know your bladder is empty.

If you do give it a go and need any more info or help then we are here for you.

Shazzie xx

Good morning. Yes bladder issues are horrible and undignified. My husband has recently had to find out about my stash of nappies, which I was keeping for emergency/high risk times, but am having to use more and more. I just hate the indignity of it all, and at all other times can get away with pads and hoping that I can make it to the loo in nearly enough times. But how do you dispose of nappies (no other way to describe) at other peoples houses without letting them know, so embarrassing.

cant face self cathertising as can’t even cope with my bits and pieces when I have period, what with balance, fumbling hands etc etc. I’m nearing my wits end with all this stuff, and people constantly watching you, waiting for you to fall over etc, I know they mean well but I don’t like it. I’m 46 and getting pretty frustrated. Any ideas?

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Hello! I`ve had bladder and bowel incontinence issues and yes, it is degrading and upsetting. But my circle of close friends, carers and family all know about it and I dont feel too bad when accidents happen in front of them.

Bladder-wise first…I always seemed to have a weak bladder way before my disability set in. So I used pads ranging from tiny Brevia to the biggest Tena…I`ve been using NHS pads (very glam!) for several years now.

I dont use them all the time, as I had a supra pubic catheter fitted 2.5 years ago. I tried the urethral kind before and hated it!

The spc is the best thing for urge, wetting accidents and going out.

I never tried self catherising…it wasnt offered but I never fancied it anyway.

Bowel issues…Ive had a few accidents and never felt it happening..........these days its more a case of constipation rather than looseness. I take laxido and eat a high fibre diet…also drink lots of water…you need it both for bladder and bowels.

All in all, bladders and bowels are a chuffin` nuisance!

luv Pollx

Might be worth asking doc about going on a long term low dose antibiotic if self catheterising regularly. I found I kept getting UTIs because of. As I a due for another botox and will probably need to ISC again, urologist has told me this is the solution.

Hi Slug

I found tampons to be much harder to deal with than catheters. My hands are crappy. I type with my thumbs as my right hand wants to make a claw all the time. I’m constantly straightening it out as I don’t want it to get too comfy like that!

I’m lucky now that I seem to have stopped having periods (yayhay). I’d had to stop using tampons and use towels, that I absolutely hated. I’m now 48 so it’s pretty early to be menopausal, I’m just praying that my body has completely decided to stop monthly bleeding. My GP said that sometimes people have the odd one even after months & months.

But intermittent catheters are a much easier proposition. I’ve been using them for about 4 years and as I can’t wee most of the time without them (apart from the odd accident that is, damn body can’t always make its mind up). It’s worth having a go. You can always decide you can’t manage it but not if you don’t try! Plus there are lots of different types so you can try all the types and see what works best for your hands!

Sue

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Have you tried medication for your urine difficulties? I have been given tablets by the specialist, and told not to have any caffine or fizzy drinks. It is working really well for me, unless I try to cheat and have a tin of fizzy :slight_smile:

Have you tried medication for your urine difficulties? I have been given tablets by the specialist, and told not to have any caffeine or fizzy drinks. It is working really well for me, unless I try to cheat and have a tin of fizzy :slight_smile:

Thank you for your comments. I’ve tried tablets for hesitancy but they didn’t agree with me (had some sort of allergic reaction). I don’t yet suffer with uti’s and my kidneys are working fine, so just informed urology and my doctor that until such time I will just carry on the way I am. I’ve brought some bigger pads today so hoping they do the job for the incontinence days. Am on lactose and movicol, but yet they are proving worthless so will also carrying on pushing through there as well (no pun intended)

My husband of 10years is very supportive and fortunately very strong so can lift me up on days when my legs don’t want to do that job, and just laughs with me when I wet myself (luckily this has only happened when I’ve been at home so far)

Thanks Sue for helpful words, I suppose I feel that once I do go there, that’ll be that, but should prob give it a try. I am waiting to for menopause and stopping damn periods, but that’s not right is it.

Take care xx

Mrs P in B, I like the pun, humour sometimes the only way through, toilet humour the best kind when talking about these things sometimes…take care x

slug

always have a poly bag in ur pocket-thats what i do.

ellie

Let me know if I can help, either post on here or pm me. It’s a touchy dilemma whether to try usc or not, and how to go about it without complete embarrassment or loss of dignity. But believe me, it’s possible.

Sue