How come I cannot need the loo, and then the second I think about it, I’m desperate to the point of accident. Same as all those trigger situations- sitting down not needing to go, the standing up and desperate, key in door lock, getting out of bed etc etc. Has anybody come up with a way of overcoming these triggers? Is it me?
It’s not just you Slug. It’s many of us. Personally I spend all day wanting a wee and am actually physically incapable of going ever. Unless I have a UTI in which case I wet myself on a regular basis.
And I’ve tried lots of different remedies. Not only does nothing work, most things actually make it worse, botox, Cystistat, etc. And the drugs either don’t work or give me side effects (like hepatitis!)
Bloody bladders. I’m seeing the urologist again on Friday. Wonder what miracle will be suggested this time?
Sue
Yes indeed. I am currently some tablet that gives me awful acne…more than when a teenager. It’s all quite disheartening. I hope you’re neurologist’s latest miracle helps x
hi slug
it’s definitely the key in the door for me.
we have some coir matting as we come in and i regularly spray febreeze on it because of the pee ailment.
i self catheterise in the morning and at night but accidents still happen.
oh well, luckily my vanity and self respect went out as ms came in.
just when you think at least it’s not the other kind of incontinence, bam! it happens.
my saying is F.I.S.H - Fck It Sht Happens!
carole x
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Suddenly needing the loo when you stand up isn’t just an MS thing. Hubby doesn’t have MS and he’s noticed the same thing. I’ve not had the key in the door problem. If I’m going to need the loo I know about it before I get to the door. The urgency makes it harder to get the door open.
All of this has made me desperate for the loo.
I’m a patient at a London bladder clinic and have been since before I was dxd with MS. The treatment is pretty controversial - long-term antibiotics - but I and many patients think they’re wonderful.
Anyway, when you have an appointment they go through a list of urinary type questions and one of them is about what you describe - ‘latch key urgency’. I didn’t even know that this was a thing before. I try to make sure that I’m not arriving home desperate for the loo, otherwise it’s a bit problematic.
They know all about what they call ‘MS bladder’. It’s a right nuisance.
Louise
…Me too. My neurologist described the problem as a form of hesistancy. A valve shuts and then releases filling…the bladder to the point of urgency. I have an appointment with a very good urologist. LDN has really helped. This is twice now. The incontinence and pain is horrid. Right now I have an indwelling catheter and bladder spasms. They HURT!!
The only thing that works for me (sometimes, not always) is I do a countdown on the way to the loo, making sure I never get to single figures before I’m ready. Not sure how this works but I seem to be tricking my brain that I need to get to zero in order to “go” on when using the countdown method, and I’m actually to at ten or thereabout when I’m ready. It sounds stupid but it works sometimes so that’s good enough for me.
Derek
I’m fed up telling hubby to put the seat down!
By the time I shuffle along the corridor, desperately trying to undo my jeans with one hand and drop the seat with the other,I dont always manage.
Grrrr!
Yes Derek, I also try counting in some form. Sometimes doubling, 7, 14, 28, 56 etc and I try to start with an awkward number to make it more difficult coz apparently it’s the brain being preoccupied that stops you thinking about how desperate you are. I’ve tried counting down but not very successfully. I’ve tried saying stupid things then counting the letters or spelling backwards…p.e.a.n.u.t. t.u.n.a.e.p maybe I need to be more consistent. I’m glad you’re getting there before 10 brilliant.
and yes poppy, I know exactly what you mean…all theses unnecessary little obstacles xx
Trousers, that can be pulled down very quickly, are essential.
Jeans just show up the wet patch.
John
I was always a lid down kind of person. Leaving not just the seat up, but the lid too bugged the hell out of me. Likewise, bathroom and loo doors had to be closed. Now the seat must be down (thank you chaps) but the lid has to stay up. Plus the bathroom door must stay open, cos whether I’m staggering with the walker (unlikely but possible) or in my wheelchair, it’s a right pain in the butt to have to open the door (it opens outwards). So when well meaning visitors kindly put the seat down but also the lid, then also politely shut the bathroom door, I silently growl.
Sue
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When it comes to misbehaving bladders, I blame MS/HSP and gravity. I often have a row with gravity…It’s against me a lot of the time, taking pens, grabber, notebooks etc floorwards!
Pollsx
ah yes gravity the b**tard!
i trip up yes, but gravity pulls me down much harder than it should be.
i think i’ll ask that lovely professor brian cox to sort it out for me.
at least it has a use if im constipated.