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3 years ago

I would be interested to know what people have to say too. I have the urge to go a lot and sometimes get a pain, especially in the morning. I try and hold on as long as possible as after 2 children I was told to strengthen and train my bladder again with exercises! I have read that Botox can help?

3 years ago

I found as my MS relapses got worse, and the numbness worked it’s way through my body that I was left with 2 settings for the bathroom, All Okay and GO NOW. I’ve spoken to my MS nurse and my MS Physio and am trying the ‘non medical’ route first

My physio has me doing lots of pelvic floor exercises (lots of lovely discrete sitting and clenching everything – you know the one I mean 🙂 ) along with pilates which seem to be helping a little. I’ve also found that doing oxygen Therapy a couple of times a week at my local MS Therapy Centre is helping greatly, perhaps it’s just that my brain is less foggy so I notice things more.

I’m also drinking at minimum of 3-4 litres of water a day which at first makes you feel like you’re in a revolving door for the bathroom, but after a couple of weeks means I have much more ‘capacity’ 🙂

Hope this is useful 🙂

3 years ago

Don’t try to hang on, you can’t hang on! When most people get the message that they need to go, they can send the message back to their brain to say ‘not now’, we don’t have that luxury! I gave up caffine ages ago, and have had a bladder scan. There is lots of simple advice in a publication on the ms trust website. Try running the taps to help if you can’t go, or for girls stand up, sit down and off you go again. The proper term is ‘dual voiding’. I didn’t really mind what it was called, it did the trick! Drink enough early in the morning to get your kidneys going, or you’ll pass small volumes all day long.

3 years ago

Hi! I suppose it depends on which side of the problem you are… incontinence is one thing, but hesitancy is the other (my side).
With me, I sometimes have to hold my breath until I nearly fall off the loo unconscious until it would finally flow, but it all depends on how much I have drunk during the day. A proper volume of fluids will actually help the bladder to release rather than if you just had a cup of tea here and there. Caffeine doesn’t affect me there, but alcohol does (even before I got diagnosed it made me want to wee all the time).
If all doesn’t work, you could always get referred to the continence clinic? (I hope you have something like that where you live)

3 years ago

Hi I’ve got PPMS 12yrs and had various degrees of bladder issues. The most frustrating being frequency and urgency which now I’m in a wheelchair is worse as accessible toilets are never around when you need them! I now use a conveen and a bag that I plumb in when I go out which takes some of the stress out, although finding discreet corners to plumb in can be awkward. Many friends and family have small downstairs loos that i can’t get into for example.
A big problem is that emptying my bladder sitting down is impossible. I find I can only release 150- 200mls of a full bladder. When I finally find somewhere that i can haul myself up to a standing position -grab rails etc, that gravity or the straightening out of my urethra seems to do the trick.
Has anybody else found this?
Tea,coffee,juice etc doesn’t seem to effect me, luckily alcohol such as wine is oj but really annoying is beer which sets me off, even 1/2 pint will do it which is really annoying as there’s some great beer in yorkshire, and the best pubs have the worst access and the most inaccessible loos!!

3 years ago

Hi I have very little strength holding on if I need to go.. the feeling is urgent and sometimes I rush to the loo and then NOTHING…. so frustrating, so I run a tap to try and get things going.. sometimes it works.. sometimes it doesn’t. I have been seeing an Incontinence nurse (through my MS nurse) who gave me a device which can stimulate the pelvic floor with a probe attached to like a TENS machine.. (Sounds painful but it’s not).. It is supposed to wake up the muscles… still waiting to see results 😀

3 years ago

I use self catheterisation when I feel like I haven’t been properly. Which gives hrs of comfort. But then I’m a man, not as easy for a lady I have read in the past, sorry

3 years ago

HI All,

I have frequency issues and used to get up 5 times at night time to go to the bathroom and this disrupts my sleep a lot! During the day I always like to be near a bathroom as I go frequently. I take Detrusitol 4mg (max dose) to help with this and also cut down on caffeine etc all the usual steps! I find that I still need to go just as much if I have drunk 2 liters of water, or just a couple of glasses of water. The detrusitol helps and I now only get up twice. It is always worth speaking to your doc to see if they can help with bladder issues. Be well xx

3 years ago

There appears to be two types of bladder problem, urgency and frequency.

Now the urgency is down to the MS and messages not going from the bladder to the brain properly. We use medication to try and address this.

But, we can also suffer from retention. This means that when we go, we don’t actually empty the bladder. This causes the frequency.

I’ve been through the full gamut of problems, strategies and medications. Eventually, I asked to be referred to Urology to see whether there were any other solutions to the problem. Once they had checked me out, I was offered Botox as an answer.

OK, Botox is a fix that you need to keep doing, every year or so. But, boy, does it give you a new outlook on life! No longer having an anxiety attack when someone uses the loo. No longer having to get up at night.

Talk to the continence team. Try Intermittent Self Catheterisation (ISC) to address the frequency problem. If this doesn’t help, get referred to Urology.

Have a read of my local MS Treatment Center’s newsletter. There’s an MSer’s article regarding Botox treatment for bladder problems. It’s on Page 10 :-

3 years ago

I was told by an MS nurse that the best preventative strategy for bladder issues in MS is regular Pilates, because each exercise strengthens the pelvic floor. She used to be a specialist continence nurse, so I reckon she knows what she’s talking about. I daren’t stop the classes!

3 years ago

Hi. I’m on bladder medication as I seem to want to go a lot but also don’t know always know when I need it. Urologists were very good and confirmed that my bladder has spasms but my pelvic floor is good. Since being on the meds I have noticed a slight improvement but it’s still early days. Gentle exercises will always help though! 🙂 x

2 years ago

It is so good to feel that I am not alone. I have had bladder issues for many years. I tried a bladder therapist, bladder meds, bladder acupuncture and a urologist. I have given up any caffiene products which cause my bladder to”run like a faucet”. Every one has helped for a short while and then my bladder problems come back full-force. My incontinence pads have gone frome size 1 to 4 to 10. I now need a diaper-like product to help make it possible to not change my clothes ever couple of hours. I have tried medications with no success.
a while back, my urologist suggested self-catheterization or even surgery. But I wanted to do it on my own. Lot of good that did for me. He also suggested botox.

@stumbler I see that you have had success with this. Could you please share?

2 years ago

@avengr13 , Botox is a game-changer. I’ve had it done twice now and I need it done again.
I provided some detail in a post above (7th May), but let me know if you have any specific questions that I can answer.

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