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Urology appointment

Hello again, especially to those of you who have responded to my earlier posts about my bladder issues.

I saw the urologist on Thursday. What a nice man. At last someone who understood me. He listened to me, he talked to me and he answered my questions before I asked them. It was like a breath of fresh air.

He’s put me on the URGENT list for Botox, which will be done under general anaesthetic. First I must have urodynamics test, even though he is pretty certain what that will show, hopefully within two weeks, and I’ll have to have a pre op assessment.

They’ve swabbed me to see if I’m carrying MRSA, and taken blood samples - that was the hardest bit, my veins were hiding and it took three attempts!

So, hopefully it won’t be long now. If this works, and the urologist is optimistic, it really will change my life.

1 Like

hi flowerpot

great news!

what a waste using botox for wrinkles

carole x

great news! sorry, I have forgotten…do you self catheter or have you got an spc?

pollx

Hi Eve

That’s brilliant news. Hopefully the urodynamics will be soon then bring on the Botox.

I think it’ll work for you. For exactly the reasons it didn’t work for me. Basically you’ve got the type of bladder problem that’s fixable with Botox and I haven’t.

Will look forward to hearing about the results. They did tell me that it can take a few days to kick in so don’t expect a miracle on day one.

Sue

Self catheterise because my bladder doesn’t empty fully, but I have frequency and urgency issues.

Hopefully the Botox will do the trick.

Eve

Thanks Sue. The consultant sounded positive and optimistic, so I am too.

Eve xx

Hello Flowerpot,

I’ve had bladder problems for yonks and looks like I will be going onto BOTOX. I will find out for definite in a couple of weeks. Took me a while to find a bladder consultant who was MS sympathetic. I ended up at Queens Square, London seeing a Uro Neurologist.

I’ve heard good stories about BOTOX so good luck. I hope it works for me. Rediscover a full nights sleep. Nothing worse than waking up at 4 for a pee that only fills a small wine glass. Wide awake after using a catheter.

Good luck,

Patrick

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Hi Patrick

I think you should make sure that Botox is the right therapy for your problems. For bladder incontinence I think it’s a wonder treatment. But some urologists seem to be a bit Botox-happy. Even though my urodynamics test and in fact my symptoms didn’t really fit the diagnosis for which Botox was the right treatment, I was given it. It made my urge frequency worse in the short term. I’m now hoping that my current treatment of Cystistat is correct and that it’ll soon make the feeling that I want to wee all the time better.

Wheras, for someone with bladder spasms and urge frequency coupled with incontinence, it’s a miracle treatment.

Sue

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Hello Sue,

My problems are bladder spasms and urge frequency coupled with incontinence. Stop taking anticholinerics and it is a wet-out

Patrick

I’ve been living a nightmare for over two years with bladder problems.

All you’ve stated and some more.

Just had urodynamics. Dr said ok I seen enough. You need Botox.

Had it and what a difference.

First day… Felt the need for a pee, was able to hold it (YEAH) then Later on I peed myself ( grrrrrrr)

Next few days felt the need to go and dripped a few drops… Then I felt sad… My bladder felt full

My pee nurse got catheters out to me the next day. Now I use them 4 times a day. But what a difference it’s made to my life.And I can insert the catheters without a mirror. Best part if I think I need to empty my bladder whilst out I can stand over the loo and aim my pee without touching the foul public toilets. I’ve always said… Much less bovver wiv a hovver lol

tilly

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Hi. The antichlorinerics haven’t worked for me, nor did betmiga, hence the Botox. I don’t relish the thought of general anaesthetic, but if Botox works, it will change my life. The sooner the better.

Eve x

Hello Tilly,

I call that a RESULT!

More people need to know about what is available and not to suffer in silence

Well done.

Patrick

I’m not a fan of general anaesthesia either, I don’t understand why you have to have a general. When I had my (pointless) Botox, it was a local anaesthetic. And there were no major problems, I couldn’t really feel it, the only thing was that my left leg decided to have a rather painful spasm each time the Botox needle went in. But it’s a lot easier to get over a local anaesthetic.

Sue

I totally agree Patrick, I think Botox ought to be available to everyone with urge frequency and incontinence. My only caveat is that giving it to a person without incontinence and whose urodynamics test don’t show bladder spasms doesn’t necessarily fit the diagnostic criteria for Botox. I suspect there are a few urologists who automatically think MS plus urge frequency equals neurogenic bladder spasms and the treatment for that is Botox if the anticholinergics don’t work. A prime example of when an MS diagnosis leads doctors (and me of course) to equate all symptoms with a neurological cause.

Sue

The urologist told me that it’s necessary because they inject the bladder in twenty places.

I still have to go for urodynamics, even though he’s already put me on the list for urgent botox and, even though the urologist is confident I have a neurogenic bladder he’d rather do urodynamics because if anything were to go wrong it would be hard to justify having done Botox without it.

Helllo Sssuew,

A criteria for giving Botox to anyone with bladder problems is a urodynamics test which should eliminate the problemdsyou are discussing

Patrick

In theory yes. My urodynamics test didn’t fit the criteria but the urologist decided to give me Botox anyway. The urology nurses who did the urodynamics said “spasms don’t always show up on cue”!

Everyone seemed very surprised when the Botox made my bladder problems worse.

Sue

I’ve had Botox 3 times. The first time was under a general as they also put a camera in to have a good look round. After that it has been done by local and yes they do about 20 injections but it really wasn’t as bad as expected.

I didn’t have urodynamics done either.

The Botox is great though and definitely does its job!

Sarah

Great news. I’m so pleased this looks positive for you.

I had my SPC fitted because of your exact symptoms and it has worked for me.

Fingers crossed this lovely Urologist will sort your problems out for you.

Shazzie xx

Hi Everyone

I have just joined the forum, reading through it has given me a chuckle on a bad day. Thank you!

Just thought I would share my recent brain fog incident with you.

Some Christmas wrapping paper has just appeared in my fridge! I have no idea how it got there or where it came from!

Keep smiling! A x