Hi all, I don’t normally post anonymously but I’m a little embarrassed to ask. Those who suffer with MS related bladder issues, how did it start for you? I’ve noticed recently that when I’ve been to the toilet for a wee and finished, I’m standing up and not realising that I seem to still be going. I’m not sure if I’m just rushing around or if this could be MS related? Any information or sharing of your experience would beach greatly appreciated.
A bladder that just lets go is very common on MS. Other people have a bladder which never lets go, but that’s a different thing.The nerve signals to and from the brain get scrambled and the muscles which are normally closed become relaxed. Result - wet pants - again.
Before I was formally diagnosed I knew the location of every public toilet in town, but even then I often never made it in time. I even went to my GP to get my prostate checked out.
The thing to do is ask your GP or MS nurse for a referral to a Continence Nurse. You will be able to talk about your specific issues with a professional who can advice you on the best course of action for.
In the meantime, the best advice I can offer is never wear light coloured trousers.
There’s also the problem of not being able to feel things properly ‘down below’. Which would be why you’re not finished when you think you are.
There are a few things to make sure your bladder is as empty as possible. The ideal way to pee is to have your feet raised a bit higher, so you’re semi-squatting. Maybe if you just have a plastic box in the loo or something to raise them up. Then there’s leaning forwards, pushing on your bladder. There is a small battery operated device that vibrates when you turn it on, the idea is that you press it against your lower abdomen and it stimulates the bladder to empty (like a vibrator!!) Then of course there’s just taking your time about it. Waiting a few minutes after you think you’ve emptied.
Personally, my problem is the opposite, I can’t even get started at all, so I’ve been using intermittent self catheterising for years because I simply cannot wee naturally. So I’d tried all of the above to get started until eventually starting to ISC 6+ years ago.
ISC is also an option if you find that you just aren’t able to know when you’ve emptied your bladder fully. But you should, as Anthony suggested, talk to a Continence nurse. If you don’t have an MS nurse, then ask your GP for a referral.
I completely understand the desire to post anonymously. After years of problems with bowels and bladder, I have lost all self consciousness about the matter. If you find you are able to start talking about it with people, it becomes much easier to deal with. But feel free to stay anon.
Thank you both, two very informative responses. I have my first MS nurse appointment next month so I will mention it then. When I was younger, I had the opposite problem for years of feeling like I needed to wee but not being able to or never feeling like I’d emptied my bladder. Can it go from one extreme to the other?
Not in my experience, but with neurological problems I take the view that anything is possible.
Hi anon, welcome to our wee continence club (said in Scottish accent). Like Sue & Anthony, I’m beyond the embarrassment now but went through a ‘shy’ stage for years. Even saying to my g.p. “pass water” as if I’m at a dinner table!
The not fully emptying bladder and dribbling are typical mixed signals from brain to any area with muscles & nerve endings. I started like that around 2007.
Glad you’ll see your MS nurse soon. She’ll refer you to continence services, they’ve heard & seen it all, and everything is matter of fact & discreet.
i am part of the pishy club as well (said in a scottish accent too!)
bowel/bladder nurse input in invaluable-they will use words that u understand.
the help is there-take it!
To be fair El, you can’t really do it in anything but a Scottish accent!
i love a scottish accent.
it would sound so much better so say that i’ve pished myself again!
to the original poster, see the bowel and bladder clinic,
you can self refer, just google your nearest one, phone them and make an appointment.
they are marvellous.
mine was a former midwife so she definitely had seen it all before!
one other nugget
if you are constipated you are likely to be retaining urine.
my bladder nurse told me it was because there is only so much room in th abdominal cavity!
by the same philosophy, sometimes it help me move my bowels if i have a good old pee first.
by heck i’ve learned a lot about my body!
And, by heck, so have we.
hope you enjoyed it anthony!
My bladder problems started about the same as what you are experiencing Anon. I would be anywhere and I would all of a sudden feel like my bladder was trickling.
I started intermittent self catheterising about 5 years ago and at first that was working fine. Then about 18 months ago I would leak again so I now have a Supra Pubic Catheter that has been fitted permanently to remove wee from my bladder into a leg bag which works really well for me.
Hope this has helped.
For me, I have two issues, one if I need a wee, I can’t rely on being able to wait. (I can sometimes, just can’t ‘trust’) So now if I need a wee everything stops, priority 1, find a loo. The other issue I have is the same as you. Have a wee, dry & Wait for ‘second’ mini wee. After that it’s ok.
To me it’s just another part of learning how to live with my new body both these things started at the point loads of symptoms came along & I got diagnosed, lots of things went away but these issues remain (intermittently).
I am trying to teach myself to be less self conscious about being open about how I actually am, so I have resisted the temptation to be ‘anonymous’.
Sarah that is exactly the same as me! I have learned to wait for the ‘mini wee!’ It doesn’t always happen but I don’t want it catching me unawares! I also find that sometimes when I go my flow comes in dribs,drabs and trickles and I feel like I have no control over what’s going on lol! I have never mentioned it to my MS nurse and they haave never asked. Perhaps I should mention it?
Thank you to everyone for their comments. I am still undiagnosed and I’m still coming to terms with what’s going on. I have a unique name, which is the same as my forum name, at this stage in my journey I need to figure this out for myself before I can figure out how to deal with other people’s reactions. I have a feeling that my family or work team may use this forum to get their own answers, hens why I’d like to keep some of my weird symptoms to myself for now. Everyone input has been invaluable, thank you!
Thanks for your reply. What other symptoms did you get at the same time? My sensory symptoms seem to be in overdrive lately.
My real name is not ‘Sarah smith’. I came up with it because I thought it would be obvious it was not a real name, then, when I was talking on here lots of people knew people called Sarah smith.
Re wanting to be unidentifiable; It was the same for me, I thought those Who care about me may come here to look for info & I did not want to be identifiable.
I am nearly a year in and although I wish to be identifiable to those on the fourm, I, especially as I have become more and more open, I would not want my real world to recognise me & my posts.
So, it may be an idea to create a new screen name so we can identify you as an individual when you are asking q’s about different things, but you don’t risk giving info to your real world which you wish to keep private.
I believe you can contact Oliver Admin to get your user name changed. Then you won’t be so easily identifiable. I think when I started posting on the forum, I was a lot more circumspect as to what I would and wouldn’t share. These days, anything goes. And I now actually don’t care if I am identified by anyone I know. But then, at this point in my life I’ve had no choice but to have everyone I know also having quite personal information about me.
So, change your name if you want to be ‘known’ by us but not by the people who know you in real life (like ‘Sarah’). Or post anonymously. Do whatever you feel most comfortable with.