was just wondering if anyone had issues with running to the toilet constantly, as it has pretty much taken over my life and I was wondering if anyone had any tips? I have cut out caffeine and was also prescribed betamiga to help but it hasn’t proved its worth!
Sounds like you need to get in touch with your nearest / local NHS (Bladder & Bowl Clinic) or MS Nurse for management.
Bladder not emptying properly is an annoying MS symptom.
Speak to your MS nurse. They can do a scan of your bladder to see any fluid retention.
As previous post said you may be referred to the continence nurse.
I was put on solifenacin. Seems to help but makes my mouth very dry so I drink water. Vicious circle then!!
Hi, oh yes…bladders and bowels ruled my life too.
I went through the Continence Service. I went through a few meds for bladder calming…ie oxybutynin…left me with a sore dry throat and mouth…solfecinan…no good…vesicare…no good…oxybutynin patches…no…
betmiga has been the best I`ve tried…still on it.
But I had an in-dwelling catheter fitted and hated it…so uncomfortable. Then I had a supra pubic catheter fitted. It is about 90% effective. I get it changed every 4 weeks.
I have zero mobility, so it is the best thing for me.
Before it, I needed the loo hourly…a right pain it was.
Hope you find something to suit.
It is definitely my worst symtom, cant even leave the house without having to go 5 minutes after, i do attend the incontience clinic but will have to get back on them as its not getting any better and have no relief in weeks, i will ask about soifenacim and see if its something i can try! Thank you:)
Hey there, so is that a combination of the supra and the betamiga thats works best for you? Also can I ask how long you had been taking the betamiga before you noticed any help? I hope these questions are okay to ask? I’ve never actually posted on the forums before? But thought I’d reach out as I havent had a full night’s sleep in months now because of it. Nightmare lol! Thank-you
Hi again. Yeh I still take betmiga and have the spc. I did notice a difference almost straight away when I went from oxybutynin to betmiga.
Have you thought about having botox in your bladder?
I havent had it but it has some good reports.
Hey, yea I definitely thibk i need to try a different approach, I havent noticed any real benefit from the betamiga and ive been on for a few months now! Ah i didn’t know there was botox for the bladder! Something i will have a look into! Thank you so much Lauren
yes my bladder is a big problem too. Having to go to the loo all the time. Until I started intermittent self catheterisation ISC sounds gross? Yes at the beginning but now it is excellent. I ISC when I get up and then before I go out - so bladder empty and no more searching for a loo for a little while,
Bladder Botox too works for me.
if you have to get up at night to go to the loo ask for a prescription of Desmopressin and that should stop you getting up
Had bladder problems for years. Currently on a combination of low dose betmiga and oxybutylin. This has worked pretty well for me. All the other bladder meds gave me hideous constipation. Hope you find something that works for you.
Yes me. Problems with frequency and urgency. Ask for a referral to the continence team. I saw a continence nurse who scanned my bladder and it wasn’t emptying fully. I learned how to intermittently self catheterise, and tried four different drugs, but still had problems with frequency and urgency. Botox injections in my bladder every six months have transformed my life. I have to self catheterise to empty my bladder around 6 times in 24 hours, but it’s solved the sudden need to get to the toilet. If you do find you need to learn to self catheterise, if I can do it, anyone can. The nurse was going to teach me on my bed and brought mirrors with which to inspect my anatomy! I didn’t think I’d be able to get in a position on the bed with mirror and insert catheter without at least another pair of hands to arrange my legs for me! So I went and sat on the loo, and did it by touch. I was lucky that the first time I was successful at my first attempt, but it wasn’t always the case, but it’s no problem now. Good luck xx