Last reply 4 months ago

I’m costinatly thinking where are the toilets when I go out! It’s a problem it’s like iv got to go there and then my body won’t wait long. It’s been like this for 11 years since I was diagnosed. Can anything help?

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4 months ago

Hello @stacey, I completely identify with this too. For me, it means that I have to plan everything and it kind of takes away the ability to be spontaneous. It can also cause a bit of anxiety. Have you recently spoken to your GP or MS team about it? More effective medications do seem to pop up quite regularly. Good luck!

4 months ago

@stacey , there’s an app for your smartphone that might help. Here’s just one :-

There are others available for both iPhone and Android.

4 months ago

Kegel exercise can help you will find there’s apps for it also my doctor has just put me on betmiga it stops your bladder spasaming so your bladder can fill up rather than needing to go every 5 minutes and know where every toilet is in a five mile radius .

4 months ago

hi stacey, know the feeling, got the tee shirt , dont know if this helps but the nurse i see at the contience clinic gave me a card that says THIS PERSON HAS A MEDICAL PROBLEM AND NEEDS TO USE A TOILET , CAN THEY PLEASE USE YOUR TOILET
she told me i can use it anywhere small shops anywhere, as yet i havent had to show the card , with mcdonalds, burger king, all bookmakers have good toilets and are usually happy to let you use them whether you are betting or not.
hope this helps yours hank

4 months ago

Wearing a pad helps as it gives you a little more time to get to a toilet. And there are medications out there to try.

4 months ago

Hi Stacey,

I can totally relate to your story. I know exactly where every bathroom is where ever I go. I found that the first sign I get that I have to use a washroom I go to it. Don’t wait. Also I told my Dr. I was struggling with this. He put me on a medication called Toviaz (4mg) daily. It relaxes your bladder muscles. I can now go 4 hours between bathroom visits. But still I never try to hold it or wait. I go to a washroom as soon as I feel it. Good luck and thanks for sharing.

4 months ago

If you go on the MS Society website you can order the card as described above. Essentially: I have MS, I need a loo.

A young fellow in John Lewis looked askance at me when I asked for the disabled loo key. I could tell he was processing the, ‘bu5 he looks fine, is he having me on? ‘ thoights.

I was losing patience so I offered to per on the floor then and there, and then hang around to explain his attitude to his boss. I got the key!

4 months ago

@stacey,you’ve had a variety of helpful suggestions – here’s another….. try tena lady. They are brief, discreet and stop the anxiety. I know you’re young but it’s surely worth a try. xx

4 months ago

My MS Nurse said there is a test they can do on your bladder she has referred me for a test. Think you can get tablets for it she mentioned they might be side effects tho.

4 months ago

During winter and strong wind its a nightmare.

4 months ago

When I had the tests -urodynamics – I was then prescribed solifinacine and it has been a life saver. I still have to use management tricks such as using the loo twice and stopping drinking about half an hour before leaving the pub.
On days when I need to give a urine sample, I plug up with kegel balls so I don’t wet myself on the Tube on the way to the hospital

4 months ago

Thank you all for your advice😊, it’s that bad if I don’t go I wet myself and iv done that quite a few times. I’m at the point now where iv had enough so I’m seeing my MS nurse on Wednesday.

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