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Bladder botox - experiences

Hi all

I’m being offered bladder botox by my urologist to calm down bladder spasms and sensitivity and I wondered what people’s experiences have been.

The kind he’s suggesting should last for 2 years, so if there were any negatives, I’d prefer to know before having the procedure. It’s not like you can reverse it if there are any unwanted effects.

I already ISC, so I don’t see that as a problem. I’m hoping that it will make the bladder more reliable, so I can ISC then go out and know I’ve not got to empty again for X no of hours.

Does it always work right? Does anyone find they lose all control over the bladder so it makes them less continent? What, if any are the effects on the bowel? Is it likely to increase constipation, or will it have no effect at all on the bowel? Are there any other downsides that I’ve not considered?

Thanks

Sue

Sue, I did talk to my uro about botox before having the spc fitted. He said it can take several months for it to work…so that needs to be thought about.

pollx

pm`d you Sue.

pollx

I’ve had it done, twice now. There was 6 months between the 1st and 2nd and it will be 9 months by the time I have the 3rd. I didn’t know that it could last 2 years!!

The first time was under a general anaesthetic as they needed to have a look around while they were in there! The 2nd time ( and from now on) was just a local. I was a bit scared but it really wasn’t that bad.

I’ve got nothing but praise for it. Yes, I ISC all the time but I don’t ever need to get up in the night! I think it took a week or two to get its full effectiveness but certainly no more.

I haven’t noticed any effects on my bowel. I do now do irrigation (just the last couple of months) but I don’t think it’s connected with the botox at all; just more MS problems!

I appreciate it’s different for everyone and some people don’t like it. However, from my experience I definitely recommend it.

Sarah x

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Thanks for your responses Poll and Sarah.

I’m very encouraged by your experience Sarah. The urologist said he is using a British type of Botox as opposed to the American type (?) which apparently only lasts for up to 6 months, the British version lasts for up to 2 years. They still do it with local anaesthetic.

I was totally happy with doing it until today I suddenly started thinking if it went wrong, I’d be stuck for 2 years with an even worse bladder problem than I’ve got now.

I’ll continue checking it out, I’ve got a few weeks yet, apparently they have to do some kind of test first which should be done in the next month, then they have to agree with the CCG that it’s OK to fund it (of course it’s one of those stupid things that actually costs less than not doing it and the NHS supplying drugs etc but they still have to ‘get funding’).

But I feel that I will probably go ahead unless I hear any truly awful reports about it …

Sue