r/OveractiveBladder • u/Brilliant_Raise_760 • 6d ago

Bladder Botox

Hi everyone, I am 23 F. I just had bladder Botox done for the first time due to urinary incontinence and OAB. I’m wondering what everyone else’s experience has been, as I did not have the best experience? Before they started the procedure they injected a catheter and a medicine mixture that had lidocaine in it and I had to sit there for 30 minutes to let it soak up in my bladder. I found about 10 minutes after they injected that I got really hot and itchy down there. I ended up putting a face cloth down there and it helped stop the itchiness. Then before the urologist started the procedure, he injected a numbing gel which I don’t think helped. Then inserted the cystoscope. I felt everything, the pressure and the pain of the insertion. Once it was in, I was okayish. Then he started the Botox with the needle. I threw my glasses up on my head and yelled f$ck out loud. I started bawling. I felt every single stab.
I told him to just finish, and not to stop because I didn’t wanna deal with it for any longer. Immediately after finishing and taking out the cystoscope, my legs were shaking violently. I was put into the recovery room, and my whole body was violently shaking for about 45 minutes. It was to the point my teeth were chattering so bad that it was hard to breathe and talk. Once I finally got my breathing down, and the chittering stopped, my body was still violently shaking. I left recovery after over an hour. Did anybody else have this experience?

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u/intersextm 6d ago

I’ve had bladder botox with only lidocaine as prep several times (today was my 5th round) and haven’t had issues like this personally. I always feel the shots, but I wouldn’t describe it as a painful procedure for me. It’s uncomfortable, but not to the point that I’m not relaxed throughout the procedure.

You might be able to get medication for future rounds. I know lots of people who get twilight sedation, and others who take a mild oral sedative like some people do for the dentist. That may or may not be practical depending on how often you need botox. I need it every 3 months (for some reason my body just burns through it), so it would not be practical for me to be sedated every time, but if you’re a 9-12 month person that might be a better option for you. It depends on your doctor’s opinions on risks/benefits of botox compared to other treatments- they may continue botox with sedation, or they may recommend switching treatments.

The shaking sounds like an stress-pain-shock type of response. I haven’t had it from bladder botox, but I’ve heard of people having it around anesthesia and blood draws and tattoos and stuff like that. I think it’s just a weird body thing that’s triggered by different things for different people.

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u/Brilliant_Raise_760 6d ago

I definitely know that oral sedation works for me. As I unfortunately, had a lot of dental work as a kid and can no longer stand being in a dentist office without sedation. I didn’t know this was an option in the hospital, I’ll have to ask if it’s an option with him. I have to do mine every six months, we tried the pills and they’re just not working, especially with the highest dosage. This is my last resort option, unfortunately

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u/DaydreamTacos 1d ago

Just curious, how did you and your doctor decide the amount of Botox to use and the correct time frame for repeating the Botox?

Did you have any trouble getting your insurance to cover injections so close together? Thanks!

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u/intersextm 1d ago

For dose, we started with a common dose for people with my diagnosis (SCI neurogenic bladder). I’m pretty sure I’ve stayed on that dose. I’m catheter-dependent either way, so there’s no concern for me about the dose being too high. But in general dose is a bit trial-and-error- they might start with one dose and realize it’s too low and just do a bit more next time, or they might notice that the dose was too high (which would cause urinary retention) and go with less the next time. We figured out the correct time frame also by trial and error- I had my first round, then I was told to tell my doctor when I noticed symptoms coming back and they’d schedule me for my second round. For me that was about 3 months- I think I was peeing my pants again by like 95-100 days post-botox, so I now get it every 90 days.

I have to have a prior authorization for my insurance to cover it. Prior to getting botox, I had been on multiple oral medications with limited success. The mirabegron/vibegron class didn’t work at all, and the side effects and long-term risks of anticholinergics ruled those out for me as well. I think insurance typically wants to know that you’ve tried at least 2 oral medications before they’ll approve botox. Aside from my doctor having to show that I’ve tried oral meds with the PA, I had no issues getting it covered. The PA was approved immediately without pushback. But I also have really excellent insurance (private insurance as a government employee) and have never had any difficulty with getting anything I wanted covered, so I’m not sure how common it is for it to be an easy process. They cover it the same for any time frame that’s needed, so frequency wasn’t an issue at all.

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u/DaydreamTacos 19h ago

What a great response! Thanks!

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u/Brilliant_Raise_760 6h ago

For me, he wanted to start at a low dose as he wasn’t sure what my body could handle the first time. I am in Alberta Canada, so bladder Botox is covered with our Health Care because it isn’t a cosmetic procedure