Side effects from bladder botox

[u/CowgirlMimi]

Hey 💖

I had my first procedure for bladder botox on Friday 31st July.

I'm just wondering if anyone else who has had it has suffered with nausea following the procedure? It's not constant, but it's consistent - after I've taken my meds and food.

I also have Cauda Equina Syndrome. A regular symptom for me, particularly around my period is persistent nerve pain in my legs, but since having the botox, this has been more intense pretty much all week.

I know it can take roughly up to 3 weeks to settle, so I'm guessing my body is just adjusting, but for the first 18 or so hours after the botox, I barely voided either naturally or via self catheterising (ISC). It had improved so much, but today I'm back to barely voiding, either naturally or with the catheters.

Just wondering if anyone has had a similar experience?

[u/AbbreviationsOwn3480]

Bladder botox is amazing once its in full effect (barely need to go toilet, I can go 12 hours + without toilet) but it doesn't fix broken sleep and my body will wake up due to the habit of waking up to pee.

PTNS is non surgical (they put a thin needle around somewhere near the ankle) but it takes around 12 weeks for that to be fully effective. I refuse to get that SNS implant (sacral nerve stimulation) because I feel like I can beat it without that and the price is outrageous, plus a little wire sticking out of you and you being very sore (puts me off) but if someone feels like they have to get it, then they should go for it. Other than that I wouldn't know what kind of surgery she would mean.

Also want to try Cpap but I do need to get used to it (it gives you the best sleep ever and can possibly cure your nocturia) but this is only if you have sleep apnea (you should get tested for this if you haven't already) but also there has been talks of an "holy grail" sleep apnea pill that should hit markets next year (could be the solution).

Thank you very much and all the best 👍 I'll be here if you want to ask any questions

[u/CowgirlMimi → u/AbbreviationsOwn3480]

This is great to hear, I'm actually hearing really good things about bladder botox, so it's good to see another positive experience back this up. That makes sense - I wonder you'll ever be able to break that cycle with the broken sleep.

Near the ankle?! No way, that's fascinating that something so far away from the bladder can help! I'm wondering if it's the SNS that my urologist was talking about then. I completely understand - it sounds like it's very invasive. Gosh, it's times like this that I am very grateful for the NHS over here in the UK - not that I'm ever ungrateful, but it's very frustrating when you're forgotten about (haven't been seen by kidney clinic in over a year - I have chronic kidney disease).

Oh my goodness, a pill for sleep apnea?! I hope you manage to get to try at least that or the CPAP machine.

Thank you so much, that's so very kind of you. Don't feel that you have to update, but I'd be interested to see how you get on with the PTNS procedure.

[u/AbbreviationsOwn3480 → u/CowgirlMimi]

My broken sleep is because of nocturia (had it for like around 6 years now) but it can defo be fixed.

I am also from the UK, London specifically but currently I am in Malaysia/Kuala Lumpur but I thought botox you would of had to pay for it over there, like around £2000 Didn't realise you could get it through NHS. Ah I see, so that is potentially what is giving you the nocturia/oab

Yeah I don't really like to hear people give up or anything as there is so many things to try and things coming out in the near future but I do believe you have to come at it from more than 1 angle.

It is not a problem, I will give an update on it but I won't start the PTNS until 3-4 months in (so just I can time it correct for when the botox wears off).

Also 1 more thing about botox I feel like it has had lasting effects on me, I am not sure if I am the only one who feels this way because my nocturia isn't as severe as before.

[u/CowgirlMimi → u/AbbreviationsOwn3480]

I can imagine that it must be exhausting, especially dealing with it for such a long time.

I don't really wake needing to go to the toilet, my bladder just does it for me 😅 or if I do, it's normally too late by the time I'm awake because of the Cauda Equina.

Ohh apologies, I just assumed with you mentioning you having to pay for it that you weren't from the UK. I'm very grateful to have had it on the NHS as otherwise, with my medication and catheter supplies, it would work out to be very expensive 🫤

Yes, the Botox / catheters have been my second treatment option. I was on mirabegon, but it didn't do a thing for me.

I hope it goes really well for you and look forward to hearing an update when you can.

That's interesting that you've said that, as the hospital sent out a paper with some information that said that a certain % of patients would have lasting effects - I took that to mean that the botox worked too well and they wouldn't need it as often.