Vulodynia cream

[shel]

I have IC and vulvodynia. The elmiron made my liver enzymes go up so my nurse practioner had me start instilling elmiron directly in my bladder. I was already doing heparin instills so this was no big deal. She also sent me to a pelvic pain specialist and I am having surgery in a few weeks but he wanted me to start back on elmiron orally because he said it helps the vuvodynia. I told him that I didn't have the side effects and was getting really great results by instilling so I didn't want to go back to oral elmiron. He wrote me a prescription for my pharmacist to have a vaginal cream and elmiron compounded. I am picking it up tomorrow and will let everyone know how it works. He said he has never tried it but that he puts his vulvodynia patients on oral elmiron and it helps them better than anything. :eek: :eek: We will see
HUGS

[suz z]

That is really cool! I didn't know that you could get Elmiron instilled. Is it cheaper than Cystistat? That's what I would like to do if I can get it. Then I wouldn't have the digestive probs, right? And if it helped with sex - whoopeee! I've gotta tell my doc about this! Please point to where I can get more information - a web site, someplace on this site, whatever I can give my uro.

Thanks,
Suz

[lilac22362]

Hi Shel,
I too have Vulvodynia and I'm on Elmiron have been for almost 9 months, but was wondering if you could write out the script of the Elmiron compounded with the cream for me? I had been doing well with my vulvodynia with Estrace cream and Neurontin and now all the burning has returned and was curious if you could get me any info all this for my doc. Good luck with it.
Rene

[shel]

I wish I could hon, but I don't even know what he wrote. It is elmiron compounded in a plain vaginal cream is all I know. If your dr wants to call my dr then I can give the phone number to you but I don't even know if the stuff works yet!! I am on neurontin also but I thought it was for the IC pain!
HUGS

[shel]

Whoever it was that e-mailed me about the vulodynia cream--please e-mail me again!! I deleted your e-mail by mistake and I wanted to know if it worked for you!! :D :D
Please e-mail me!!!!
HUGS

[Shelleynz]

Hi Shell
A friend of mine has vulvodynia and is interested to know how you got on with the Vulvodynia cream with Elmiron mixed into it?
Thanks
Shelley

[shel]

Your pharmacy just takes a universal vaginal cream and coumpounds it with the percentage of elmiron that your dr writes on the prescription! It has been working for me!
HUGS