Neurological conditions
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Bladder and ms

charlie2017charlie2017 Member Posts: 24 Listener
edited November 2017 in Neurological conditions
I wonder if there is anyone who has any experience of bladder issues and ms that could give me some advice please 


  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @charlie2017

    Welcome to our community/website !!!

    I have had massive problems with my Bladder following Brain Surgery (Radiation) for my Brain AVM.

    I had bladder surgery three years ago where I had a channel from my bellybutton through to my bladder.

    This has created further problems so I'm having more surgery 2wks this friday.

    Please let me know if I can help you futher ????
  • Wheelability1234Wheelability1234 Member Posts: 11 Listener
    Hello. I have bladder issues due to CP. I currently use kentera patches and pads. I'm having a review as it can still be a struggle to control. It's a tricky one and have tried to avoid catheters. There are problems with infection and I would find them difficult to use because I'm clumsy with my hands. I've heard that Botox helps some ppl. Speak to your GP. Good luck
  • wilkowilko Member Posts: 2,284 Disability Gamechanger
    Hi I have MS taking Bacolfen, one side effect is need to empty bladder often so after being trained to empty my bladder fully has helped and staying off certain drinks that trigger the need to empty. As with all medicines there are pros and cons .
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    I have a problem with frequency, not caused by a medical condition.  I am about to begin a course of acupuncture for the bladder (NHS).  I'll report back on how it works.
  • wildlifewildlife Member Posts: 1,314 Pioneering
    Hi All, I too have problems. I don't have MS but do have nerve damage due to lots of tummy ops, adhesions etc. I have frequency but also it stops and starts and takes for ages. Sometimes I can't seem to empty my bladder completely and then need to go again very soon after. I worry that it will get worse and not work at all. I think MS might be similar in that the nerves control the bladder?          
  • susanlilysusanlily Member Posts: 6 Listener
    Hello there. I've had MS for nearly 30 years and in the last three years it's been hell bent on destroying my bladder. My problem was retention which hospitalised me five times in one year. I now have a suprapubic catheter (Jan2017) and my infection rate has gone through the roof with thirteen lots of antibiotics this year alone. Ironically it has triggered my being able to pee normally at times so i find the consultant using me as a guinea pig. After a recent infection my GP chose to ignore the 'odd' result of a staff infection despite my stomache area bleeding and being painful, i only know of this result because of my excellent MS nurse looking into things for me. 
    So much experience, not all good but i've learned a lot.
  • feirfeir Member Posts: 396 Pioneering
    did you get your advice? i'm able to use the toilet but have so many accidents this past two months that i also wear nappies permanently (hopefully i will be out of them again at some point). i can advise on brands if anyone needs that, as i have had regular toilet needs and been a carer for people with them also.
  • mollymomollymo Member Posts: 8 Listener
    I have secondary progressive MS and after far too many accidents not getting to the loo in time I had a supra pubic catheter 18 months ago. 5 months ago I also had bladder Botox to enable me to use flip flow valves instead of a leg bag. Well I've had no more infections, can wear any style of clothes again and feel I've got my life back!! Speak to your MS and continence nurse and ask tor a urology referral. I feel normal for the first time in 20 years!! Good luck xx
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    @wildlife MS is not really the same but can cause similar issues. I too have spinal damage which affects everything from the waist down. It is progressive so I am gradually getting worse, though sometimes not so gradually. I have noticed a difference in bowel and bladder control but fortunately I started with excellent control so the reduction hasn't made any great differences as yet. At some point I will start to experience accidents and I have had a slight "leak" problem for a long time, not large amounts but enough to stain my trousers very slowly. Sooner or later though I am likely to lose all control and that is a time I do not look forward to.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • CraftylindawCraftylindaw Member Posts: 4 Listener
    MS and Bladder. 
    I have successfully had Botox to my bladder administrated by a very accomplished Urology Consultant. I was supported throughout!  It has been successful in helping me to control my bladder problems I no longer need a large pad and I have a contact number if I need further support! 
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Welcome to the community, @Craftylindaw!
  • CraftylindawCraftylindaw Member Posts: 4 Listener
  • CraftylindawCraftylindaw Member Posts: 4 Listener
    Further to my MS Bladder treatment Botox post sept. 25th. I self catheterise about 5 times a day and before my treatments I continually had bladder infections but I think it’s just over a year since my last infection!  Don’t hesitate to contact me! @Craftylindaw
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