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Rachey

Bladder urgency

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Rachey

Hi there, im struggling to get much enjoyment out of life as I can't go anywhere without a toilet. Would love to go for walks, to gigs etc.

Does anyone else have this problem? Does anything help?

 

Rachey

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Procrastinating
Stumbler

@Rachey , you need to let your medical team know that you have these problems. Then they can start to help you get to grips with the situation.

 

Start by discussing the issue with your MS Nurse. They should refer you to the local Continence service. 

 

They can investigate what's going on with your bladder, whether there is a retention problem. There's a range of medications that can help, physical intervention, e.g. Intermittent self-catheterisation (not as bad as it sounds!) and Botox, just to mention a few solutions.

 

Speaking up is the first thing you need to do.

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Rachey

Thanks, I've already been referred years ago and I get tibial nerve stimulation and can have medication. Unfortunately intermittent self catheterisation isnt suitable for me. Just wondered if anybody was struggling too and knew of something miraculous. Thanks again.

Rachey

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Procrastinating
Stumbler

@Rachey , there's the usual medications, e.g. Oxybutynin , Detrusitol, Vesicare and Toviaz, although Mirabegron has been added over the last few years. So there's a few pharmaceutical options.....

 

Is the Self catheterisation issue one of lack of dexterity?

 

:moonieman: 

 

 


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Rachey

No its because i struggle with urgency.

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Procrastinating
Stumbler

@Rachey , why is Intermittent Self Catheterisation ( ISC) unsuitable for you?

 

With MS, retention is one of the problems. This can cause Urinary Tract Infections (UTIs) and can cause the urgency. ISC is a good solution as it will ensure that your bladder is completely empty. This will give at least a couple of hours of comfort.

 

If you continue to have problems, then Botox would be an option. But, you will need to practice ISC to manage your bladder........

 

So, there are options, dependant on what is and isn't possible for you.

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Rachey

I do struggle with retention and have constant UTI's and my MS nurse said about ISC but she rang me to say she'd spoken to urology and apparently its not an option for me! Haven't always had cobstant UTI'S with the bladder problem. I so wish it would be an option for me, it would change my life!

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Procrastinating
Stumbler

@Rachey  , why isn't ISC an option for you? That's a question which is crying out for an answer.

 

You have a bladder and a Urethra, what else is needed? Have you actually had an Urological referral in the past?

 

Sorry for all the questions. I'm not nosey, I've just been through all the options over the years and now enjoy (or is that endure) Botox and ISC - it's a lifechanger!

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Rachey

Thats fine, need all the help I can get. I've been referred a few times, they've mentioned botox but wanted me to try tibial nerve stim first and they really scared me about the catheter. They're saying ISC isn't an option because of urgency. Could possibly go for botox but not sure why I can't just go for ISC. I think they think I'd still need to urgently go all the time.

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Tired
Happymama

Oh.

 

I have a pelvic floor that can pull a bus up a hill, so it's not that.  But when I need to go, it's REALLY hard not to leak.  And I've been leaking when sneezing or even bending over in a certain way.  And I often don't even need to go much.  I'm very free of symptoms at the moment, bar the odd darning needle attack and a tiny bit of beetles running round in circles on my left heel.  

 

I hate going to the GP.  Need to tell them I lost my shin for a time, it's a very definite symptom of something. But need to get a non-functioning ankle tendon looked at too and it's getting more and more painful.  This is from a previously broken ankle.  

 

Ah well, it's all an education, lol

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Procrastinating
Stumbler

@Rachey , ask your GP for an Urological referral/assessment, so that you can see the Urologist directly.

 

Percutaneous Tibial Nerve Stimulation (PTNS) is being used and is not effective for you, so other options need to be considered, e.g. ISC.

 

:moonieman:

 

 


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Rachey

Thats fine, need all the help I can get. I've been referred a few times, they've mentioned botox but wanted me to try tibial nerve stim first and they really scared me about the catheter. They're saying ISC isn't an option because of urgency. Could possibly go for botox but not sure why I can't just go for ISC. I think they think I'd still need to urgently go all the time.

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Rachey

Thanks! I will get another referral. I really appreciate all your help @Stumbler

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Procrastinating
Stumbler

This is ridiculous. ISC would allow you to absolutely empty your bladder. That must relieve urgency for a matter of hours.

 

ISC can also be used with medications that can relieve urgency, which may cause retention.

 

ISC is needed if you go for Botox.

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Nick

Rachey,

I don't know much about the technical side of this but having recently started ISC I can tell you what a relief it has brought me, stopping a lot of problems and improving life generally.

 

Nick 


Just another Warrior...........

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Rachey

Thanks Nick, it would be life changing for me! Hope its an option for me, I'm being told not!

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