Last reply 6 years ago
Bladder on 'red alert' query

I get short notice of needing to pee sometimes, and when my bladder ‘alarm’ starts going off, it seem to send the rest of my MS symptoms a bit crazy, I was just wondering what other peoples experiences were?

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becks
6 years ago

similar lots of urgency etc – i’m on slow release oxybutnin which buys me a teeny bit more time. more recently found that instead of having the ‘usual’ feeling of wanting the loo i generally starting feeling unwell all over without the ‘i want to go to the loo signal’ and then i found if i have a pee i feel better again – bizarre!!


scotkiwi
6 years ago

Evening Gav – Yea I used to have “need to pee and need to pee now” situations fairly regularly. I had a sleeve gastrectomy which meant I have dropped over 7 stone in weight, and this has helped my MS symptoms something fantastic – and now the need to pee symptoms are much more manageable, along with fatigue too – still there, but much better… I think the overall weight drop has helped me a heck of a lot overall. Have a good one mate. Si.


reddivine
6 years ago

Yeah @scotkiwi….the “need to pee and need to pee now” situation has led to some embarressing situations over the last few years.
Hot tips….when out, know where ALL the public loos are. If downstairs or upstairs it’s gonna take you longer to get there and that may make a lotta difference.
If out with mates………cut down the amount you drink.
For the ladies…….panty liners are a boom.
Go even before you think you need to go, cuz by that time it can simply be too late!


lillylilly
6 years ago

My mam has a weak bladder, so whenever we went out anywhere we would ALWAYS end up in public toilets. She has always taught me to never pass a loo!!

I have that sense of urgency too. And what annoys me is sometimes I rush to the loo, and sit there for five mins while waiting for my bladder to remember how to wee!!


reddivine
6 years ago

Think calming thoghts, deep breathing, and teaching the relevant muscles to RELAX, helps lilylily. I go and then by the time I get downstairs need to go again!


daisy
6 years ago

Yep, this is all sounding very familiar! I have tolteradine to help with bladder problems and most of the time it’s pretty effective but there are still a few urgent moments!

Lillylilly – I get this too, and the more I am actively thinking how much I need a wee the harder it is to go, it’s very annoying! My only tip is to always have a book in the bathroom – reading seems to take my mind of it and then it just happens – weird…


rose99
6 years ago

I also have this and my doctor put me on Detrusitol 4mg once a day and i find that i now need to go less during the day but at night as well! This means I get more sleep which is invaluable! Maybe ask your doctor what they can do to help you…


gav
6 years ago

I developed a strategy to commence ‘opperationg pee’ by pressing fown on my bladder area (juast at the bottom of my stomach) to irritate my bladder that little bit further to pee.


ophelia
6 years ago

Lilylily I spoke to my ms nurse the other day as I’m having problem with urgency coupled with hesitancy. She suggested ‘jiggling’ my bladder when I’m sat on the toilet, do don’t press your bladder, just jiggle it!!! Worked wonders!!!


pearsoni
6 years ago

I know what that feels like – I also get a kind of ‘this is your 5 minutes warning’ sensation from my bladder, that progresses (after about 5 minutes) into ‘I have to go to the loo – NOW!’

I spoke to my MS nurse about this and she was all for putting me on a catheter but the urology doctor has put me pamsvax – not sure if it helps or no as I haven’t been on it that long.


thechunkeymonk
6 years ago

God I love this website. It is so weird reading other people talk about the things that I’ve been dealing with on and off by myself for the last 7 years! Bladder control and the 5 minute warning have been a relatively recent issue for me, and one of the few things that Tysabri hasnt seemingly improved.

I’ve had a few ‘accidents’ recently, which have led to me dreaming that I’ve peed myself during the night. I’m worried that at some point these dreams will actually come true, so there’s always a slightly worried check of myself when I wake up!

Weirdly I do still get stagefright in certain situations, regardless of how desperate I am to go. It can be infuriating. Like @scotkiwi I have benefited from losing some weight, and have also tried a couple of different meds to try and help this, but haven’t used them regularly enough to say whether they have benefited.


scotkiwi
6 years ago

Yea @thechunkeymonk you’re totally right – great to have a website to discuss and also reading about ppl with the same issues I have to deal with. And I agree with getting stagefright too at times – regardless of the urgency requirement! Its most weird.
My job is looking after a runway and taxiway at an airport and there have been times that one just has to go…on the runway… otherwise its a long walk/hobble to a bathroom out there… tough !!!!


indigojane
6 years ago

Your MS nurse is the best port of call for info on bladder control. I now take medication and the best thing is it works. There are special pads for the guys as well as the girls.There is a plethora of help out there for all of us.So good luck to all.
Janex


cbeebies
6 years ago

I do vary on the need to pee front. Urge was one of the precursors of my second relapse (only twigged this after though), last relapse was the opposite with some retention mixed with some urgency! I find that when I’ve got problems releasing I pull out my mobile and that seems to trigger release. (Don’t ask me why…)


lillylilly
6 years ago

Ah lads, I couldn’t stop thinking of this thread last night. I was up SO much during the night to go the loo, but couldn’t actually go! Had to sit there for a few mins at a time, breathing deeply, trying to think of other things, etc. It’s so strange when your body forgets to do something so natural. I have been weeing without issues for 29 years!!!!!


tracy
6 years ago

the dreaming thing @thechunkeymonk, i have had it happen to me. now im sometimes up twice in the night, also im in the bathroom at least 4 times a day. my drive to work is sometimes a challenge.


rose99
6 years ago

I dont know whats worse! Not being able to go, or needing to go all the time. when it was really bad beofre I knew what it was, I could go 17 times in one day and 5 of those could be at night time!!


tracy
6 years ago

i didn ‘t know this was a MS issue. i just thoguht i was drinking too much 🙂 i am going to pay more attention to it now.


thechunkeymonk
6 years ago

Reading the above has really made me smile – bit at anybody’s misfortune I might add, more at how there are other people thinking and going through almost exactly the same as me! I had 3 meetings today and overdid the coffee first thing, so was jiggling around like a lunatic during one of the presentations!

Luckily I made it to the loo in time on both occasions, but only just! I just sometimes don’t think things through, as I knew I’d need to be sitting for an hour an a half, yet somehow forgot how my bladder likes to embarrass me in those situations! Must do better!


thechunkeymonk
6 years ago

Just re-read my post – it was supposed to say ‘not’ at anyone’s misfortune! Ha ha, whoops!


tracy
6 years ago

i did that today as well, i had too much coffee this morning and forgot to go to the washroom before i left the house!


becks
6 years ago

oh thank you all for sharing – its not just me thats up on average 7 times a night which does my fatigue no good!!!!

Today must have been the day to not nearly make it to the loo on time day seeing as i nearly didn’t make it twice – think everyone thought i was a nutter the amount of times i walked passed them to the ladies!!!


ophelia
6 years ago

My bladder got better after my steroids….but now it’s decided not to acknowledge the signals again…awaiting continence nurse referral :0( so annoyed! Angry day again today….apologies for the grump!!


purpleorc
6 years ago

I can fully relate to bladder problems having them myself. Any trip that meant leaving the house was like an military operation with me planning where every toilet was going to be en-route. No doubt I would end up visiting most of them whilst out. Eventually I bit the bullet and mentioned it to my GP who in turn referred me to the a new neurology team. Within this team was a continence nurse who helped solve my need to dash off to the loo. Unbeknown to me I had urine retention a machine tested that even after I had emptied my bladder I was still retaining nigh on 500mls. I now self catheterise which has stopped the accidents. It has given me the confidence when out and about that I don’t have to plan a route knowing where every single toilet is.

So to my advice is don’t suffer in silence there are many different avenues to be explored to help keep you continent. For me I was so glad.


highheeledfagin
6 years ago

My rule when I’m out is two toilet trips for every pint – even if I don’t feel like I need to go, I will not have any drinks in the last half hour that I am out and will pee twice. Coming back on the bus from a drink with friends just became a harrowing experience. I find that management tricks like this and, as somebody pointed out, knowing where the toilets are can definitely help to cut down on accidents/near misses. Because my symptoms are now quite minor, I am about to be tried on a small, daily dose of Solifenacin – we’ll see what difference that makes.


lillylilly
6 years ago

Ophelia, thanks for the tip re “jiggling”.
It’s hilarious, but I am totally gonna try it!

Having wierd starting sensations of a UTI the last few days too so am spending ages sitting on the loo making sure it’s all gone!!


katy1
6 years ago

Purpleorc you could have been writing about my life at the moment. I’ve seen the continence nurse twice and had retention of 200ml and 100ml so have had self catheterisation recommended. Just spent an hour trying to catheterise and failed miserably, it’s really hard!

The thing is that even though I have the same urgency as everyone has described and it was one of my main symptoms leading to diagnosis, the nurse has said urgency is not an MS symptom and I need to ‘mentally control’ my bladder. Has anyone else come across this??


Anonymous
6 years ago

Urgency has become a much more noticeable problem for me recently. I don’t seem to get any warning. One minute I don’t have to go…and the very next second its a ‘I’ll be lucky if I make it the ten steps to the bathroom’ situation. And I have had a few…close calls to put it nicely.

@katy1 – thats kind of a weird/interesting response from your nurse. Given that I’m pretty sure it isn’t your mental control over your bladder that you are having issues with…and that incontinence is a documented issue with MS. *shrug*


t
6 years ago

mawson
6 years ago

Sounds awfull, but it is in a way nice hearing that others have the same problem! Was on Oxybutin 5mg twice a day which was great however not at the moment as pregnant so not on anything,just waiting for baby to decide to snuggle up to bladder! Do an intermitent cathata once a day which really helps and when I go out know where ALL the toilets are!


djdsouza
6 years ago

Vesicare and Oxybutin disabled me… and I was already disabled. They didn’t seem to work at reducing the amount of times I needed to go to the loo, so weighing up the pros and cons, I’d rather go without the medication.


rose99
6 years ago

@katy1..it is definitely an MS hting and can nto be controlled by your mind!! Cant beleive she suggested that to you. I take 4mg Ditrusitol and that has helped with the frequency issue, I still go more often than ‘normal’ people but no where near as often as it used to be before the meds.


djdsouza
6 years ago

I believe controlling your mind can lead you to control your body. That’s why things like meditation can help. It depends how hard you want to work at it – and I’m a lazy bastard

Can’t pass this up without adding my bit, I have had issues with my bladder for years. I not only have urgency but (just cause God loves me) my bladder doesn’t empty properly so I just get that horrible urgent feel every 40 minutes. So I have learnt to ISC (Intermittent Self-Catheterisation) which has helped me ensure that I don’t get UTIs and also means I can have (more) confidence going out and about. I am now waiting to have Botox in my bladder to combat the urgency, which will hopefully give me back my life.

There we go.
Over and out xxx


katy1
6 years ago

Just wanted to thank you all for your comments, they’ve really helped me. I’ve gone from feeling like this is the worst thing in the world to being more accepting of it thanks to the posts here. I’m newly diagnosed and my head is all over the place, so it’s comforting to learn I’m not alone having these symptoms.


rose99
6 years ago

@katy1 I am diagnosed 8 months now and still feel the same way! It is a steep learning curve and a lot to take in. If you ever want to talk drop me aline and take care x


purpleorc
6 years ago

Sorry katy1 I didn’t reply yesterday to your post but my PC upped and died on me 🙁

Yes self catherisation is hard there is no denying that although the more you practice the technique the easier it becomes. I was very lucky as I had a head start so to speak as I was a nurse way back when the dinosaurs roamed the earth 😀 Even for me it took some time to get the right knack so to speak but one day I cracked it and got the technique.

Don’t get too down hearted about not cracking self catherisation. It will come with practice it does take time even for me with medical training. More than once I wanted to throw the catheter out the window in frustration. So battle on as you will win through in the end and feel so proud.

take care
purpleorcx


cheryl77
6 years ago

Ugh! My bladder hates me! My warning system went into early retirement. Sadly, my co-workers know my potty dance. I’m pretty sure I’m having complete emptying…after I go, I relax and wait a minute or two and complete it. I could be wrong, I’ve never had a formal urology eval though. It makes me feel better knowing I’m not the only one burdened by this. Thank you all for sharing!


melanieellis
6 years ago

I have suffered with this and volunteered for a clinical study into overactive bladder syndrome (a very common chronis MS symptom). It is run by Dr Anthony Kupelian at University College, London. The research is looking into whether overactive bladder syndrome is actually a mainfestation of an internal, and undetecetd infection, which it partly was for me. Fore definite I have overactive bladder (although my bowels occasionally join leaving mme so deeply ashamed I would be happy for the ground to swallow me up!). Before starting the clinical assessment I was told about Solefinacin Succinate (brand name “Vesicare”) which is a drug which stops the late cramping or warning system that produces overactive bladder symptoms. Apparently, this is recommended by NICE and yet many GPs do not offer it. I started on 5mg a day and now take it twice a day. I am a changed person, I still check where my nearest toilets are in all situations, but I rarely have little have no or little warning about when I need to go and everything is much more manageable! I am a changed person, the anxiety has reduced incredibly and I feel next to normal.

I can fully recommend that anyone in the London area should contact [email protected] and see if you can get involved. I asm involved in the study not just for my own benefit but also because it is important to understand the causes and effects of something which seems so minor but affects so very many people with MS and can be so disruptive to normal life!

Of course,if you cannot or do not wish to be involved then please speak to your doctor about Vesicare – I promise the difference it could make seems minor but could be so life-changing.


tattyhead
6 years ago

MelanieEllis – I am on the same bladder research programme as you at UCL with Dr Kupelian.


saffi23
6 years ago

Hi l am a newbie here. l have had MS since 1991 and l am now at the Secondly progressive stage. My problem is that l can’t pee, even though l am busting. l can sit on the loo for 20mins or more, tap running. This has been going on for a couple of years. l find it very embarrassing in a crowded ladies with them all waiting to use the loo. l have been offer on a number of occasions to be taught the self catherisation method. l really don’t want to go down that road, l find that way too embarrassing. Does anyone here know of any other method that might work

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