I am new to this forum.
I have been diagnosed with Vulvodynia. I went to Iowa City Vulvodynia clinic first and did not get much help. My family doctor tried many medicines and then my gynocologyst removed a fibroid tumor that had added to pain.
I have gotten worse since 2009 and joined the NVA. This is very worthwhile as they have lots of information and assign you a mentor.
I went to Dr. Meltzer in Northbrook Il and he found a rare yeast infection and worked on my Vestibulitus. The skin is better but have burning sore pain which tied me to an ice pack hourly. He then said it is neuropathic pain and recommended a pain clinic with a neuropathic doctor which is now giving me pudental nerve blocks. Yesterday's block seemed to help a bit and I am going to get another one next Wednesday. I have been on Neurotin in the past and may try it again. For now I am going to try Amitriptilyn. Starting a 25 mg and may increase if it does not cause nausea.
Please reply to me.
lbayless
lbay

Hello Ibayless,

Sorry for not answering before but my husband has been in hospital and.....

I do not know much myself. I have tried Amitriptilyn but it messed up my thyroid meds, so I quit after two weeks - no improvement of the vulvodynia in those two weeks.

The doctor did not find any yeast or other diseases. I was just very very red and sore to the point of not being able to sit or walk. The doctor suggested mental techniques in order to be my own master and cited some books. Frankly, I have no confidence in those, so I have not tried the books. The doctor does not have any other clues.

What I have tried and what has worked to a degree is: a creme/ointment used for cows' tits applied in the vulva area but not inside the vagina. It has cured the red sore vulva, and the skin has returned to normal pink. Inside though is still too sore for anything, and the doctor advised not to apply the creme in there. During my period the vulvodynia flares up, but afterwards it gets back to "normal". It is tolerable now, and I can sit, walk and dance. Sex however is still hurtful inside but possible on the outside if kept short.

What else can I say? I am trying to live with it, being tired of no-one knowing how to help or even disbelieving or explaining away my constant pain as a trick of the mind. I would have thought that a woman doctor would be more forthcoming.

Good luck everyone and have a nice summer!

I have suffered from what I think is vulvodynia since I was very young. Every dr I have been to just said either, "Don't know whats wrong with you" or "Oh thats not the worst I've seen"
I do remember being in sooooo much pain(burning itching and pain) I just wanted to die, I was in pain for 24 days out of 28 days of my cycle.
Then I went on the low oxolat diet, and wow what a difference that makes for me, I stay away from all the high oxolate foods, and restrict the medium ones. I also find that about half way through my cycle I have a very irritating discharge, so I use a tampon to stop it irritating me.
http://www.lowoxalate.info/ This is a helpful site,
Kate

lbaylets I tried to send you a PM but it's not working??

I have neuropathic vulvodynia as well , on ami 50 mg
did the nerve blocks work for you??