Hello, I haven’t posted in this part of the forum yet so I hope this is okay. I’m undiagnosed and received my letter for my neurologist appointment yesterday. It was done through the book and choose system by my doctor but it’s not until the 5th August. It does say that the consultant may bring it forward if they feel necessary after receiving my referral. I hoping they do as I’ve been struggling with going to the toilet a lot I’ll go through days of barely going and getting very uncomfortable then I’ll have a day where I’m very desperate and going a lot. It started about a month ago but I had this in February as well it eased off in march. But this time it went away for a week but now it’s gone back to being annoying, I’m getting rather frustrated and worried about going out and drinking anything because I know one drink and I’ll need four pittiful wees not long after but I’ll get very desperate for those wees. I just wondered if any of you have any remedies for this? Herbal or just generally anything. When I went to the doctor the second time he didn’t offer any help or advice for it. I really don’t want to wait two months for this neuro appointment. Just anything that helps you when you’re going through this? Hope it’s okay to pots here and that your day is letting you cope as best as possible, take care!
I had this during my last relapse was admitted to hospital not for that but because my legs stopped working as soon as i had my first lot of iv steroids i started weeing again nothing else worked that was oneof the reasons i got a mri scan to check for compression or something in the end i couldnt poo either so was treated for that too while in there x
hi little sparrow
get referred to the bowel and bladder service. either by your gp or you can self refer.
these clinics are staffed by continence nurses who are so lovely.
not at all embarassing.
they can offer advice and medication to help with your problem.
i am so grateful for my nurse getting me self catheterising.
i know it sounds grim but it really isnt.
these clinics are for anyone with bladder/bowel problems not just people with ms, although my nurse explained how ms affects the bladder, clever stuff!
carole x
You really need to see the continent nurses. I had that too and you’re putting yourself at risk of infection and stretching your bladder. Do yourself a favour to shorten the process of finding out what’s happening, before your appointment make a chart over at least three days and make three columns: time, in and out. Time is self explanatory, measure what you drink in the in column and in the out column note when you try to wee, and measure how much you actually pass. But a cheap plastic jug for this. If you’re incontinent write that too. It gives the nurses something to work with and most will request out anyway.
I find avoiding caffeine helps, decaff tea and coffee. This is very common in ms and can be managed but it’s very uncomfortable and distressing. If you need any more info please message me as I rarely visit this section of the forum. Take care xx
Continence nurses, stupid spellchecker.
I just wanted to reiterate everything Min and Carole said. I was self-catheterising five days a week for a couple of years. If I didn’t do it I had real trouble not being able to rush to the loo for the 30 mins it took to take my son to school and get home again. Self-catheterising empties your bladder completely - it sounds as if your body is not doing this at the moment. The good news is that after a while your body might rilght itself and you may not have to do it any more - that’s where I am at the moment.
Hi I have the same problem. I’m seeing a nurse from the bladder clinic at the end of July. Can anyone give advice as to what to expect/they do? I need to check I’m not drinking too much as well as will have about 2 hot drinks and 1.5 litres of water a day. Not sure if I should cut down, having this problem? X
You should ask them but my understanding is you really should not cut down on drinking - if your urine is more concentrated your problems will get worse.
My experience of the bladder clinic is as follows. The nurse there got me to go to the loo, then gave me an ultrasound scan which measured how much urine was left in my bladder after I had emptied it as much as I could. If there is more than 100ml left, the person being looked at is retaining urine. I had this - I had more than 200ml after emptying, at my worst. Because I was retaining, the nurse taught me how to self-catheterise. She showed me the various disposable catheters available, we picked the one I found easiest to use and then she gave me some of those and ordered some more to be delivered. Self-cathaterising is not half as bad as it sounds and is a lot better than having to rush to the loo all the time (failing to make it sometimes).
As I said earlier on this thread, I was self-cathaterising for two years. But more recently my bladder problems have just about disappeared.
Sewingchick I’ve got the same relief, I’ve gone from catheterising twice to four times a day to not having had to do it for a couple of months now. Don’t get despondent if you have to do it, we’re proof that deterioration is not always permanent. When I have episodes where I have to do it all the time again I know it might be short lived and it often is. It’s just a huge relief knowing I have the option when I’m struggling. xx
Just about to say the same myself. I used to use conveen sheath and then self catheterised and now full time catheter (supera pubic) I used to get all sorts of infections until the suprapubic was fitted The contenence nurses were wonderful. Bowel and bladder problems have been my worse problems since diagnosis. Don
Yes. I have to say, self catheterisation is the best thing, though I didn’t think so at first, once the brain gets used to it, it’s brill, makes you feel so comfortable.