Botox Injections into Bladder - Anyone Experienced Them?

[Ilovefluffysheep]

I have a bladder condition that means frequency is a major issue. Been under consultant on and off for 15 years, tried bladder retraining, pills, medication inserted via catherter, bladder cystoscopy x 3 with bladder dilation, and even done 2 clinical trials. Nothing worked.

Asked for second opinion as consultant said nothing more could be done, botox wasn't funded by my PCT. Went to hospital in London this week and saw a consultant who was fabulous, very sympathetic and has got me on the waiting list for botox. Am over the moon, never expcted to get that treatment due to what local consultant said.

Anyway, just wondered if anyone on here had had it, did it work, did you end up having to self catherterise afterwards?

Hi, my neice has botox injections into her bladder, and has had for a while now (maybe 18 months, or possibly 2.5 years - I've lost track of time!).

She has mild spina bifida, and was getting frequent kidney infections, so this was an attempt to stop infection. Yes, it has worked very well for her - she said it was quite odd to start with, but she has got used to it. In her case yes, she does self-catherize, but it may be that her initial condition made it more likely - she could never feel when she needed to wee anyway, and just had to make sure she went regularly iyswim.

Self-catheterization takes her very little time, and is not much hassle - just means she needs to carry a small kit with her when out and about, which she is a lot (being young free and single, and adventurous to boot)!

Good luck with the treatment, so glad you got it funded

I've had it :-)
I've had a previous tvt and need to self cath anyway. Miracle procedure (well for me) stopped a lot of urgency overnight. I've been treated in two PCT areas and it is pretty standard now. Can i ask which PCT said it wasn't funded (so I don't accidentally move there!).

Both centers say they've had good results. I don't normally have a GA - it hurts at around 30 injections, but you can be knocked out if you want. Anything you want to know just ask!

Thanks both.

Sunshinenow - its Northamptonshire PCT. Was told under no cicumstances was it funded, and checked with the PCT direct. Also told sacral nerve stimulation wasn't funded, and that is next step.

I was told I could have local or general anaesthetic, but that with local it could still be a bit uncomfirtable. I am a huge wuss so opted for general! Night-time I am actually ok, and 9 nights out of 10 I won't get up at all for the loo, but my frequency problem is all during the day, and is a total nightmare and has quite an effect on life to be honest. Am really keeping fingers crossed that the botox works, would just be amazing not to have to go to the loo so often!

If you do have to self cath, it is not the end of the world. It's not as bad as you think.

Even without GA it is bearable with the injections, honest! One thing I would check out is what the waiting list is to get it done again. It lasts 6 to 9 months. But you need to get back on the list before then, or it may wear off before the next lot.

I'm really surprised by your PTC. From what I understand it is pretty routine now, and it does work for a lot of people.

Good luck with it.

one other thing I have thought of that you may want to watch. I felt quite ill for the week after. In the end I had a UTI. But because my bladder was numb I didn't feel it! I was really surprised by the UTI.

Sunshinenow, assuming it works, how does it actually feel when you need a wee? At present I generally need a week anywhere between 20mins to an hour. On a very very good day I can hang on 2 hours, but thats constantly being aware of needing to go.

Would I therefore only feel the sensation to go when the bladder was a lot fuller, so maybe 3-4 hours? If it is too effective and I have no sensation, how often would I expect to catherterise?

hi sorry for the delay fluffysheep, I've only just seen this.

I can only speak for myself but the thing it fixed was that nagging feeling of needing to go for a wee. So the feelings of 'fullness' was the same, but after about say 4 hours instead of half an hour. Almost like the sensations weren't triggered until the bladder was much fuller. At my worst I was upto 20 times a day. And 6 times a night.

re cathertisations, assuming no other problems it is healthy to do it about 5 times a day. So if you take morning and before bed- about 3 times inbetween. The catheters you can get now are brill. Single use. I don't think many people do need to catherise and even then only for a few weeks, but I think it you go in thinking it is bareable it wouldn't be such a shock.

I wept at the catherisation - I so didn't want do have to do it (but it was having a TVT that caused that not the botox - so please don't take me as an example). But actually after 3 years, genuinely no bother. I would rather not have the urgency. The drugs do work for me (have you tried them all?, your local pct sounds rubbish), but they send me to sleep. Motorway driving not good!

If you have any other questions please ask! Not that I'm world expert but it's a bit of a step into the unknown. Remember it only last 6 -18 months so I think it is worth a try. I will always wear off!

Thanks Sunshinenow, thats really helpful info. Not needing to go for 4 hours would be amazing, I really hope the botox works for me.

The cathertisation I'm just going to have to grin and bear if it comes to it. I am worried about it, as I said before I'm a real wuss (think crying when I take off a plaster!) and have a very low pain threshold. I know it doesn't hurt as such, but can be uncomfortable and a weird sensation. Had to have medication via catherter once a week for 6 weeks, so that gave me some idea. The only thing that is a positive and would probably push me on to be able to do it is the fact it isn't permanent. I have previously turned down a big op because the odds of it working I didn't think were high enough for such major surgery, plus there was a high chance of having to catherterise for ever, which I didn't think I could do.

I have tried all manner of drugs, and not a single one worked for me at all. The consultant did mention a new drug coming out in 2012 which we might consider if the botox doesn't work, but am just going to really keep my fingers crossed.

When are you getting it done? I'm waiting for my next appointment. Having it done again hopefully in the next 6 weeks.

In your position I would definitely try the botox. You've nothing to lose.

Also, self cathing feels a bit different. The cathetor is a lot shorter, and because you are in control it doesn't feel so weird if you see what I mean. I can do mine half asleep and v drunk!

The unit I have it done at has had some fab results (this is from talking to the nurses and surgeons) they quite rate it. (that's why I'm a bit baffled by your pct- even NICE says it should be an option).

It is a bloody nightmare overactive bladder it really is. I hope this works for you ;-). I will keep fingers and toes crossed.

May I ask what surgery you were going to have?

I'm on the waiting list, so not sure when. Consultant thought a couple of months.

I think there are quite a few PCT's that don't fund it, but my consultant obviously got it wrong that if you asked for a second opinion and went elsewhere it would be funded. He was convinced so I wasn't expecting botox to be mentioned to be honest, hence why I'm so happy!

The surgery is a clam.......... (possibly clam ilieostomy?). They basically use some of the bowel to replace the bladder, and because bowel has less nerves I understand it should be less sensitive. However, lots of potential side effect/problems, think it only had about a 70% chance of working, and a much higher chance of catherterising for life. I just kept thinking what if it didn't work AND I had to self cath.

The consultant I saw the other day did mention this option again, but only as a last resort after both botox and sacral nerve. Hoping I don't actually get to that point where we have to discuss it again!

I know which operation you mean, I think I was offered that, but as you say, high risk, I didn't fancy it either.

Well, good luck - pop back in a few months and let me know how it went. I'd be really interested. I will have had mine done again by then!

You might have lovely smooth and un-twitchy bladder!

I had it done for the same reasons as you as medication was awful and no manner of physio ever did anything for me.

It was pretty amazing akthough slightky weird initially - I had a GA and afterwards I did feel quite swollen and bruised - it hurt like buggery to week for the first 2-3 hrs after I came round and I also kept having to go ( this is whilst I will still in recoevery) However all really settled down and I had to learn to relax into my wee so to speak as I was used to doin quick wees and I needed to learn to take my time.

I had no urgency demands pretty much from 48 hrs afterwards which was one of my biggest problems and then the frequency also diminsjed. I had it done in feb this year and whilst it has all but worn off I am in a much better place now as my bladder I think has retrained to some extent ...if it reverts I would def do it again....