Does anyone go to the toilet for a number 1 to much lol thanks lee

Morning everyone, in response to your question jediknight I have been having this problem with passing urine frequently for years now and was seen by a incontinence nurse last year I was started on oxybutinin with limited effect & advised to reduce my fluid intake. Today after review of my medication by my GP he has decided to start me on tolterodine to replace the oxybutinin. I would like to enquire if any body else has been on this medication for urinary frequency & did it help at all. Thank you in advance for any replies.


Hi I also have have trouble with number 1 too often especially at night :frowning: so I was sent to see a nurse for this I suffer from Hesitancy So don’t empty my bladder properly I was shown a massage to do while peeing and offered to buy a bladder stimulator which I didn’t want ( was told not to use it in public cos it sounds like something from Anne summers!! Haha ) she also told me to stop eating citrus fruits, tomatoes and less caffeine and this has helped. She told me if I was getting up for the loo through the night then there was no point in lowering my fluid intake cos I was doing this and finding myself thirsty (kind of makes sence!) hope this makes sence! And has helped!

I have had this problem for years, I tend to need to go every hour or so, even though I also self catheterise 5x a day. I was told there is nothing that can be done. It’s a nightmare. Don’t get any sleep xxx

Could it be spasm related? Maybe something specifically for spasms might help?

Or, some people have Botox specifically to stop their bladder over-contracting if drugs like oxybutynin or vesicare don’t work.


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It’s a common problem with MS and there is lots that can be done to help including massage or medication. The treatment depends on what is causing the problem

Ask your GP or MS nurse to refer you to the continence clinic, they are the experts and deal with it all the time.

Good Luck!


Neurogenic bladder comes with the territory sadly.

Because of this disorder i have a routine with my MS nurse. If i think i might have a urine infection rather just want to go all the time, i send a bladder sample down for testing. Sometimes it is an infection.

I hate my bladder its been the bane of my life for years now. I have periods of when i just have to go all the time, then it calms down a bit. The worse time is if i overdo it, or get too tired.

If i go anywhere i have to make sure there are toilets on route lol.

I was told NEVER to cut down my fluids just to live normally as I can. Yes there are meds out there which can help, but I dont do meds.

I strengthened my pelvic floor muscles, and when i go for a pee, I rock back and forward and it helps to empty a bit better.

I was borderline for a catheter but i dont want one.

My incontinence nurse told me to retrain it. DONT go when you think you need to go. So wait longer each time. It actually is working a bit and I went from every 15 minutes to half an hour now, i can hold for an hour.

also i pee loads at night i have to use a commode now as it would mean getting up on my own not good lol. I can fill a potty lol so where did all that come from? It shows just how much I am not emptying, yet when i have a scan they say its all ok, so i dont believe them. Cos where does all the urine come from?

I only drink 2 coffees a day thats it, and the rest is water. I never drink loads from 6pm, just have a small glass to take my tablets.

Yeh stupid bladder lol.

LDN helps with bladder control -

And also people on the facebook group for Biotin for Progressive MS - are saying how thrilled they are at being able to go through the night without getting up for the loo. Someone on Primary Progressive forum also says she has had this success on biotin. Read her post - biotin and bladder.

The more recent development in bladder meds is Betmiga. lt does not have the dreadful side-effects of oxybutinin.

l have had PPMS for 33yrs - and loss of bladder control - and bowels - was one of the first things that happened to me. l have had a SPC for about 25yrs now - so ‘outdoor plumbing’ - and it has been good. Hated being nappied up all the time.

Sacral Neuro-stimulation is another fairly new method that is supposed to help control bladder and bowel. Tiny device - like a pacemaker - fitted inside your buttock that controls the sphincter muscles - very hi-tech. Google it.

So there is help - Betmiga - Botox - and Biotin. All worth a try.

But do drink plenty of water - as it does ‘dilute’ the urine - keeping infection at bay. And keep away from caffeine if you can. Also filling the bladder does strengthen it - as it is a ‘muscle’. Apple Cider Vinegar made into a drink - 1 tablespoon plus honey topped up with hot or cold water and drunk a couple of times a day will help keep your bladder calm. lt will correct the ph - and is alkaline - although you would think it was acidic. lt also has many other health benefits. [And you can put it on your chips!]

l think the B&B [bladder and bowel] problems we have is possibly the worst part of this bloody awful disease. lts disabling on its own - makes it so difficult to go anywhere as we are so ‘loo-orientated’. l could do with a sedan- chair that is also a commode. Being carried along -with curtains l can pull for privacy everytime l need to ‘go’. Which would be every half hour!!

We can but dream.

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Hi folksongs

It may be worth your while having a suprapubic catheter fitted, which goes directly into your bladder through a small hole below your belly button. This can the permanently drain your bladder, so you shouldn’t need to go to the loo, and will be able to sleep through the night. Speak to your MS nurse or continence nurse to find out more. I reckon it could be a godsend for you.


Hi Lee

Something that could help you loads are sheaths & leg bags. The sheaths are like a condom with a funnel at the end, which then attaches to a small bag that is attached to your leg. It means you can pee to your heart’s content without needing to get yourself to a toilet. You can also get larger bags for use at night so you can sleep through the night safe in the knowledge that you won’t need to get up. When I started using them it transformed my world! You can get them on prescription delivered to your door. There’s more info about them here -

If you want to know any more then ask away.


Hi sorry i haven’t been on I think I didn’t explain very well i ment going to toilet for a pee could it be drinking water.Lee

See i was gonna say ‘yes, but I drink a lot of tea (after mid day)’, but i thought I better not have a smart arse answer this time… fail. Which planet you been to Lee ?.. :smiley:

Dagobah back training there andy

I totally agree with you about the bladder being the worse part of this disease. I have had problems with mine for years before diagnosis. Constantly having tests and nothing showing. Peeing all the time, never being able to go anywhere without stopping constantly when in a flare. Sick of it to be honest. The bladder spasms too painful, and the infections. One year I had 12 infections on going constantly.