Forum

Bladder botox

Had my first appointment with my new urologist last week. Took the obligatory bladder diary - input output.

So so surprised to be offered bladder Botox. Told took just 15 minutes as a day patient with a bit of bleeding afterwards. Result hopefully urinary retention 95% success and could last for 6 months.

If it works would like to take me off/wean me off various meds - tolteridine - dont mind

Desmopressin - yes do mind unless Botox itself stops me getting up at night

nitrofutaton - abx - probably don’t mind

So because this offer of Badder Botox was totally unexpected I didn’t have any sensible questions to ask

maybe there aren’t any???

I searched on this forum for posts and found some from 2017 but none from this year. So please does anyone have any comments good or bad on this treatment? Or do previous posters have any updates?

many thanks

Min xx

Hello Min

Do you currently use intermittent self catheterisation? Because you will need to assuming the Botox works. (And it usually does if the problem is bladder spasms.) Because Botox removes your ability to void your bladder. Imagine what it does to a face, then apply that to your bladder. It freezes the nerves that are causing the frequent urge to ‘go’.

If you don’t already do ISC, then you should try that before the Botox, just in case that helps all on its own.

Otherwise, if you do ISC now, then there’s no reason not to give Botox a whirl?

Sue

Hey Sue,

Thanks I was pretty sure that you would reply - you’re such a support.

Yes I already ISC - appointment on Monday. Really hope it works - it will be amazing if it cuts my trips to the loo.

Apart from you no one has replied so I am thinking that this treatment isn’t often used?

Min

I’m just a few steps behind you Min. I have tried everything going and my urologist suggested the BOTOX to me. Have done all the diary etc and have an appointment next week to see him. I don’t use ISC and this hasn’t been mentioned as an option to me. Does this really benefit? Thanks Chrissee x

Hi Min and Chrissee

Yes Botox on the bladder does work. Many people swear by it, say it’s changed their life. If you experience bladder spasms and possibly incontinence as a result, or just constant trips to the loo regardless of emptying your bladder fully, it does the job. It basically freezes your bladder (imagine how Botox freezes a forehead, then apply that same thing to your bladder!) So any bladder spasms stop as a result of the Botox. And if you are sometimes, or frequently incontinent, that stops too.

It’s done either under local or general anaesthetic and is a series of little injections to the bladder wall following the anaesthetic, so even under local you don’t feel anything. The urologist sees what s/he is doing with a camera, and even more ‘exciting’ you can see what is going on via a TV screen. Whether you’d want to I’m unsure. (I kept my eyes shut, seeing the inside of my bladder as little needles go into it isn’t something I cared to watch.)

But, the problem is that following the bladder Botox you are unable to wee ‘normally’ (for those of us who use ISC all the time already weeing without a catheter would be unusual!), so you have to use intermittent self catheterisation (ISC). And because you can’t wee naturally, you need to be familiar with ISC before you have the Botox, not after. So I would expect Chrissee, that you need to try ISC for a while before leaping straight into Botox treatment. Urologists are generally surgeons, so they think of surgical solutions to problems. When you see the urologist, talk about ISC. You should probably see a bladder specialist nurse to discuss ISC first.

I had bladder Botox a couple of years ago. It did work, and yet it didn’t. My problem was not bladder spasms, it was (and still is) a feeling in the urethra that says ‘I want a wee’, like a small irritating child, all the time. So the Botox didn’t help. And neither does any poxy thing. I just live with it.

Good luck for Monday Min.

Sue

One last thought - there are lots of people on here who’ve had bladder Botox, try doing a search on the two words and you’ll find many, many posts. I have no idea why others haven’t answered you Min. S x

Hi,

I’ve been having Botox every 6 months for the last 3 - 4 years. I think it’s great! I do ISC about 6 times a day and I don’t get up in the night. I do it around 8pm and don’t go again until 7am which is brilliant!!

The very first time I had it was done under a general anaesthetic as they like to have a good look around while they are in there. Since then it’s been done with a local. I was very nervous the first time but I didn’t need to be. There’s one part of the bladder that is more sensitive and it does hurt a little in that particular area but the rest is fine. I’d rather have Botox than a filling at the dentists!

I take a low dose antibiotic each night to prevent infections.

Sarah x

Thanks for that Sarah - I don’t think I will get a general anaesthetic just local. Really excited about it will hopefully transform my life. Not having to go to the loo all the time. I too am on low dose antibiotics which the doctor wants me to stop. I started them as was getting so many urine infections. Don’t see how Botox will stop that as it’s all to do with ISC when having a period.

I agree with Sue, Chrisee that you will need to learn how to self catheterise (ISC) before Botox. It sounds really scarey and can be difficult at first. But over time it is really easy. It really really helped me in the beginning as I could ISC before going out. This meant I didn’t have an endless search for a loo many times when out. Hope your appointment goes well.

Sorry botox didn’t work for you Sue.

I went to see my new bottom doctor with my bowel diary. He is recommending a sigmoidoscopy - camera up the bottom. There’s my dignity out the window. Bladder Botox will be a breeze compared to this.

thanks everyone for reading and the kind and helpful replies. You always help me through as totally understand compared to a non MSer. And any way I don’t necessarily want to moan on about bladder and bowels problems to family and friends.

Min xx

I’ve had a sigmoidoscopy. You’re absolutely right, learning to ISC, having the nurse at my GPs regularly look at my bum, seeing the bum doctor (aka colorectal surgeon), sigmoidoscopy, bladder Botox, SPC, finally colostomy. There is nothing whatsoever I’m embarrassed about any more. Anyone can look at anything I’ve got, anytime. A neighbour I’d never met before came and helped my husband pick me up after a fall the other day. I was dressed in knickers and a T-shirt. No shame, that’s me.

Sue

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Take me as I am , that’s the bloody spirit Sue

I spent far too much of my life worrying about what people thought about me, did I look good? Did my @rse look too big? Was I a crap dancer? Was I clever enough? Did I earn enough?

None of this is of any benefit to me now. I’m fatter than I would prefer, I am fortunate enough to be married to a solvent and generous man. So my lack of current earnings isn’t a major problem (I thank my lucky stars for him!) As for dancing! In a wheelchair? I’ve got all the moves. Not.

So if people are more likely to want photos of my bum from the inside rather than the outside (!) then so bloody what. I’m still the same person. And the people who love me don’t give a toss about whether I look pretty or slim or can dance.

S x

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Good morning,

It is done ie bladder Botox. Turned up at 9.15 and home by 10 am - so ok home is only 5 minute drive from hospital

i had NO ANAESTHETIC!!! just a bit of lubrication. And it was fine - ok a little uncomfortable- but I’ve suffered a lot worse

Doctor did say it can take 2 weeks to work - hope it’s quicker.

Min xx

Great! Hope it works quickly and you get decent night’s sleep from now on!!

Sarah x

Just a quick update.

Bladder Botox 22nd October - being quite impatient I was so disappointed that nothing changed immediately.

However now the transformation is amazing. I am keeping bladder charts to measure the change.

27.10.18 I drink total of 1500mls and ISC on average 350mls each time I ISC x 6 only a total volume 2000mls

28.10.18. Drink 1550mls including 600mls squash - I prefer coffee but following advice not to have all of my intake as coffee.

output 2000mls ISC x 6 and again usually 350mls

Amazing only 6 daily loo visits and 350mls is a great volume to pass

I say Bladder Botox is a success

in a little bit of -ve fluid balance of 500mls ish. Wonder what’s going on there?

Thanks for reading

Min xx

Botox for the bladder, its brilliant. I now have the bladder of a young man and do not need to be constantly looking for a loo. Totally changed my life