3 Years and Counting

I have been to 3 gynecologists and the third one finally gave me hope. It was actually for a clinic trial, which I was ok with as long as it got me some answers and relief! Unfortunately I'm pretty sure I got the placebo and discontinued use. I know, I know. I shouldn't have stopped. But also, the clinic told me they would reach out and check up on me every so often throughout the trial to see how things were progressing, and they never did. So today I decided to get online to do some more research myself since I'm tired of getting my vagina looked at by strangers. I thought maybe, MAYBE I had some kind of chronic yeast infection issue (I thought this because the last time I went in, I was told I had a yeast infection even though I did not have any tell tale signs). So looking into the infection business led me back to the vulvodynia, which I had come across before. That led me to the National Vulvodynia Association (NVA) which I recommend taking a look at their website if you haven't already. That's where I found what I am almost 99% sure I have: Secondary Vulvar Vestibulitis Syndrome. Quite the mouthful, but it describes my situation to a T. Sooooo, that brings me to my question(s): Does anyone have a magical cure that I am unaware of?? (wishful thinking...) How do you deal with not being able to have sex on a regular basis? Has anyone tried using lidocaine for a temporary fix? (i.e. topical or Dermoplast) Any feedback will be much appreciated. Sorry for the novel.

No magical cure, I am headed in for surgery next week which my doctor claims will make me feel a lot better. I really hope so because this sucks.

Like you I had a normal sex life (I read your other post) started on tricyclin and was put on loestrin when you guessed it I started having pain! I got off of that went on yaz, seasonique, and finally mircette (I have to be on BC for my period). My pain never went away so I doubt you haven't given it enough time, I think it's just there (sorry). But that being said, I don't know if my pain was caused because of birth control or other related things. I had to go to a gyno when I was 3 because of bleeding issues caused by Mr Bubbles. When I was 17 I went on a sulfa drug that caused me to have a horrible yeast infection. I am also very prone to bladder infections and bacteria. Thrill.

I don't have a boyfriend so sex on a regular bassis doesn't really bother me, but when I did, we took it slow and it was sort of pleasurable. I have only use lidocaine for pain (it burns REALLY bad when you first apply it).

The things I have tried that didn't work (but might for you): Estrace, a compound of gabapentin ami(forget the name its an antidepressant) and lidocaine, a compound of estrogen and lidocaine, acyclovir (herpes medicine I do NOT have herpes but they thought it would help with nerve endings it didn't and not even a treatment), muscle relaxers, allergy medicine, various vitamins/oils, and over the counter pain killers.

I used the NVA to find my new gyno, and I really like him, he said I will be feeling better in a few weeks and I have to believe him, I have done everything I can do and there's not a lot more I can take. Where do you live? The NVA is amazing and their website is pretty awesome too as it gives a lot of information that I didn't know or needed reminding of.

The most important thing at least for me was to never give up. Don't get me wrong, I was very upset and depressed about this, but I knew someone somewhere could help me. I was proven to be right when I found my doctor. He was the first person to ever actually see exactly where the problem was. Make sure to educate yourself as best as you can so you don't try useless treatments and waste more time. The acyclovir for me was a big waste as it's not even a treatment for vulvodynia. Antideprssants for some people work well, but I didn't want to deal with the side effects, and my doctor claims they take a while to work because of the adjusted doses. Let me know if you have any questions, hope I helped

I live in Arizona. I was trying to look through the NVA for a dr but I guess you have to donate?? Which is fine, I just didn't take the time to do so. I honestly haven't tried anything to solve the problem, I just kind of figured I would be stuck with it for the rest of my life. Thank goodness I have a wonderful boyfriend who has gotten more supportive over time. We had already been together for 2 years before the pain started. Don't get me wrong, it has definitely not been easy for him either, but after seeing me in so much pain I cry or almost throw up after sex, he got the hint. I don't know if I'm interested in antidepressants either, but I'm getting desperate. I've tried a lidocaine ointment which did nothing, but figured I'd try the Dermoplast spray and see how that went. I love the birth control I'm on so I'm also hesitant to switch, but again, I'm getting desperate. Did this one dr prescribe the other treatments you tried or just the surgery?

No I tried other treatments with him but only one I've been going from doctor to doctor and than I found him and to be honest im sick of the maybes just fix it already. I won't even date what's the point? Sex terrified me and ugh I don't know. I can't even wrap my mind around no pain to begin with lol I didn't donate I just found my doc he's in Florida I really like him. Have you been to a specialist

Hi girl, do you still post here? I have also had this for 3 years! Hope you're a bit better babes x