My Doctor Suggested Botox

[Angeles]

I asked my doctor what other options I have if pain continues after Elmiron treatment or if I can't continue taking Elmiron. She said Botox and she explained how the procedure works and how it's done. She added that it is not approved by FDA yet and insurance won't cover so I'll have to pay for it.
I don't know if this is something I'll do, at least not now becasue my case is not that bad and hopefully I'll get better. But it is somethign I want to keep in mind in case I need it. I'm not good taking medication. I can't tolerate anything.
Should I try instillations first? I haven't tried that either. They freak me out but if I have to I'll probbably do it...
I know Botox was the solution for some people.
The only thing, again nothing is perfect, that worries me about Botox is that you may not feel you have a UTI. I wonder how people with Botox handle that?

[IcyAngel23]

You can feel your bladder and if you have a UTI the botox wouldn't affect your ability to detect it. If you were able to before the botox then you will after. Botox had alomst no side effects. Retention is the only side effect but it only occurs in less than 1% of cases. Retention can also be taken cre of by an alpha blocker like flomax. This happeds when your dr get carried away with too much botox. It is customary to start out conservative the first time.
It isn't approved by the FDA for IC but some insurances do pay for it. You just have to look into yours. Mine paid for the surgery but not the actual botox. I paid $500 for mine because my uro ordered it straight from the comapny instead of getting it thru a hospital. That's when it can get really pricey. Some pay $1000-1800 for the same thing I paid for. Some uro's are even using botox even before Elmiron because it doesn't have the side effects that Elmiron has. You get the injections under a general and you heal for a few days (you still had surgery even if he didn't cut into you) and the botox takes anywhere from 7-16 days to see the improvements. I was about 16days but everyone is different. There is nothing to be afriad of with botox or instills. I hated instills they caused alot of infections and irritation. I don't know where some people get their info but from what I've read on resent posts made me laugh. There is alot of wrong info out there about botox. Botox is temporary (4-6months first time) and has shown with multiple treatments that it works longer and eventually you won't have to use botox after awhile. I haven't talked to anyone who has gotten that far but my second time was longer(6-8months)
Elmiron is a toxic drug as far as I'm concerned. Losing your hair (small pecentage) throwing up,chills,abdominal pains and alot more. I had all of those side effects. It woks for some but the real number that Elmiron helps is less than 50% of ICers. You thought more because all the uro's push it? The other problem with uro's is that they can have an agenda. Dr Parsons (one of my uro's) was part of the team that developed it so yes he is going to push it. Other have different approaches to IC like treating the pelvic floor. The interstim is another one that is known for drs getting money for everyone they put in. Make sure you do what is best for you and do some research of your own. That way you will be informed when your dr offers another treatment. A good book is the IC survival guide by Dr. Moldwin. Botox isn't in there but almost every other treatments is. The book goes into details about what each option is and gives you other info about IC you might not know. I'm just trying to help you get the correct info. When I had botox done in 04 for the first time there was a women on the board named Cindy that she had been doing it for years even before it was experimental. I did it when it was new but she was the first one who pioneered it for the reat of us. So if you look up botox and IC you'll see a women named cindy mentioned. She helped me when I had question and made sure I got the right info so I'm doing the same. If you need more info or just want to talk feel frre to PM me.

[Angeles]

IC Angel thank you so much for the encouragement. I think I'll go for it, don't know when yet but that will be the next step.
I have the book you mentioned (IC survival guide) and wonder why there's nothing on botox there. I'll do more research on my own.
I still have some concerns...like:Does botox causes nerve damage or another kind of permanent damage? (Well, IC bladders are already damaged).
I don't have a lot of pain but it's there everyday...
I can't really take oral medications, they mess me up so much. I have to be very selective. I'm on Elmiron b/c it worked for me at the begining but after my last UTI, I remained with a constant pain, so I asked my doctor and told about botox.
Elmiron also caused me some hairloss and heartburn/nausea, but now that I put it inside a gelatin capsule I don't have stomach problems anymore. I also take carafate. But I can't say that this will work on the log run b/c I have a very sensitive stomach. I also have to deal with dry eyes and yeast infections besides the bladder pain. So if I can take care of the IC pain it'll be great!

[IcyAngel23]

Botox doesn't cause any nerve damage but it can be scary not knowing what to expect. The IC survival book is a few years old so botox is really new. It is more mainstream now than it was a few years ago when I did.Whatever th botox does it temporary so there is no long term side effects. In my opinion it is safer than Elmiron and some other drugs. I'm allergic to Elmiron so I can't take it but it can be really toxic to your body. It isn't a harmless drug. It is a myth that Elmiron helps most ICers. Actually it helps about 18% of us. So those odds suck. Botox has better numbers and the way I saw it is that I wouldn't need to pumped tons of drugs into my body everyday. Too bad it didn't work well for me in the pain department but it helped everything else. I'm just an extreme case so it might help you with pain. Good luck with everything. Glad I could help.