Botox 4 weeks ago-my progress

[ese]

Indy-
Thanks for being honest - that's what I need to hear. I've been dealing with this crap (IC) for almost 4 years without a lot of help from meds, diet, etc. A year ago, I decided that maybe it was in my head, and I needed to learn to deal with it. I stopped going to Drs and started just trying to deal with it on my own (and with a lot of OTC meds). Now, I've realized what I knew all along - it's not in my head! I went back to my Uro (who, btw is a very compassionate person but I don't think he's very interested in IC) about a month ago, and he put me on one of the few antidepressants that I haven't taken. All it did was depress me - makes a lot of sense huh?
I had heard that the Mayo Clinic was the place to go after you've tried everything else. So, I called them and they decided to take me as a patient. I'm going the end of the month and I'm very optimistic for the first time in several years. I know Botox is probably my next option, and I want to find out all I can about it. You mentioned something about an epidural. What's the deal with that? I didn't think epidural injections could be used in the pelvic/bladder area. If they can, do you mind sharing what you've learned about them?

[Indy]

Botox 4 weeks ago-my progress

I have been reading about some nerve blocks. I don't know if they will do anything to me until the Botox wears off. I'm thinking, maybe they can calm down some nerves that are still firing off and weren't affected by the botox since it was only in my bladder.

I think 100 units would have been better for the first try. I can see how it does relieve the pain once the bladder is empty!

[Nics]

Indy - I had the same problem until my urologist put a permanent catherter in. It work a treat. I was going 4 or 5 times in a couple of hours, getting 100 -150 ml each time and then self cath and getting 600 ml. The permanent cath has made the pain ease considerably. Hope you find something that works.

[CinSin]

I am so sorry that you both are having such a time with retention. I never had that much trouble with retention but never had that much injected in my bladder. It has really worked better for me to have 300 units total but less in my bladder and more in the urethra and pelvic floor.

Flore, it didn't really help much to have my pudendal nerve injected.

Cindy

[Indy]

Botox 4 weeks ago-my progress

CINCIN:

How do they know exactly where to inject the pelvic floor? I have had trigger points injections there with marcaine with me telling the gyn where it hurt as she pushed on various spots.

Does it affect sex?

Wouldn't you know it, yesterday I had a great day and went out last night and didn't go for almost 4 hours with no pain.

[Rose Fish]

Botox

Hi Flore - I am from Canada and have a few questions to ask you about Botox.
I am considering seeing Dr. Smith from Texas or Dr. Chancellor for Botox.
Spoke with nurse and they see they inject botox into bladder in the office. Is this not painful????

Also, I read about alot of retention after botox in the bladder. Did you have alot of retention???

You also said that you still use an instillation of lidocaine, sodium bicar, and heparin in the bladder. How ofter do you need to do this??

Thanks so much.
Rose Fish

[CinSin]

Rose Fish,

I see Dr. Smith in Houston and his nurse Susan told me the other day that she gave my email address to a lady in Canada, was it you? I only know one other lady who had injections in his office in her bladder. She said it hurt and unfortunately it didn't help her. That was before he started doing pelvic floor injections too and to me that makes a world of difference.

Indy,

The doctor either maps out the trigger points before the surgery or has the PT or gyn map out the trigger points for him.

It really helps with pain during sex but I still have spasms after sex. The after sex flare isn't near as bad as before.

Please feel free to email me at [email protected] if either of you have any more questions that I may be able to answer for you.

Cindy

[Flore]

Rose Fish. I never have had retention, but as Cinsin, I never have had more that 200 units inside my bladder. In fact I only have had once in the bladder

I think Dr Smith is a very good option. CinSin invited us last year to me and my dr to her conference day, and my dr and dr Smith talked about the injections and I think that they have similar ideas and techniques for the way to inject

Cinsin: Thanks for tell me about the injections on the nerve, because next June 15th I´m going to have the injections and I was afraid thinking in the results of the injections in the nerve

As Cindy, my dr in the surgery room check the trigger points for inject them. And in the next injectios he is going to inject sub-cutaneus, I hope this really helps!!!!

Bye!!

[CinSin]

Hi Flore,

The injections didn't appear to help much at first but seem to have helped a little in the pudendal nerve. It has only been three weeks and from what I have been told by people having other pudendal blocks it takes about four to really know for sure if it has helped.

Cindy

[Flore]

Thanks CinSin!!!, anyway I talked to my dr about this possibility and he doesn´t want to inject my nerve. So in this time I´m taking Neurontin again, and is helping me (for now!!)

I know that when I get the hydrodistention, and Botox, I´ll be fine again!!

Did you loose sensivity in your clitoris with the injection in the nerve??

[CinSin]

Hi Flore,

No I haven't lost any sensation in clitoris, I haven't lost any sensation in the pelvic area with any of the botox injections.

Cindy

[Flore]

Thanks Cindy!!

I have an infection!!!!, so I have to take antibiotics before the surgery!!

[RedRose]

Is botox the same as Botulinum Toxin Injection?

[deborah bush]

botox

Redrose botox is same as botox boximgilum what ever.(my speller is not great) I am going next month again for another injections of botox in Miami. Deborah

[Nics]

How much Gabapentin do you find you need to take for it to work. Im on 200mg three times daily and it made no difference. I only got relief when I had the botox done and am wondering with the expence is the Gabapentin worth it?