Vulvodynia??? What do I have?????

Hi, I'm new to this website. I decided to go here because there just aren't very many people to talk to when it comes to this topic. I've been suffering from a "mild" (actually extremely irritating) burning throughout my vagnia for the past year and a half.

At first I thought I had a yeast problem, so I went to the store and bought some monistat. Didn't work (not surprising). The pain was so bad at first that I would cry. Luckily the pain became less severe over time but it's just this lingering, irritating thing that will never go away.

I have seen probably five doctors over a year and a half. They told me I had a bacterial problem and gave me round after round of anti biotics that never worked, not even temporarily. He did a "Q-Tip test on me that didn't hurt, so he told me a didn't have vulvodynia and kept saying it's "extremely rare" over and over again. Then a doctor prescribed me with boric acid suppositories that didn't do anything either. I have tried everything. I even quit smoking and drastically lessened my caffeine intake which hasn't minimized it that much.

Could any of you give me your opinion? Do you think I have vulvodynia or something else? At this point I am tired of seeing doctors and I just want it to go away.

Hi Katie

Doctors do like everything to be black and white dont they? Your story so far sounds alot like mine, ie showing ones private parts to a wide selection of medical folk who ALL say 'well I cant SEE anything wrong, maybe a little red.....hmmmm have you tried anti fungal??' - very frustrating. Have you asked your doctor to refer you to a vulval clinic? do you have those in the states? Someone there should know about Vulvodynia. I dont think the 'q-tip test' is that great really - I had the exact same test & I really didnt feel it meant anything. The condition can vary so much from person to person, just because on a particular day you can touch it gently with a q-tip and its not agony does not mean you have nothing wrong down there. Vulvodynia can be touch sensitive or the pain can just spontaneously happen OR it can be a mixture of the two, which is what I have, & for a long time I thought because it didnt fit neatly into the various 'official' diagnosis it meant I must have someting else/I was a freak. Not so. And it can vary so much from week to week, day to day. So dont give up, dont take any more thrush/yeast treatments or any of that stuff unless you are sure it actually IS thrush, & insist on seeing someone who actually knows what they're talking about.

There are some treatments available to try for vulvodynia, and after reading alot of the posts on this site it seems to me that for some women, some of the treatments really do work. SO there IS hope, dont give up, read up on it, & then when you do get to see a specialist you'll be able to have an informed discussion & be able to work out what treatments you could try. I think its good you're trying to do something about it & that you have engaged with this forum - I wasted alot of time trying to pretend it wasnt happening & would go away by itself. I now think that is unlikely.

Best of luck to you, I really hope you shift it!!

Thanks for the reply and finally someone understands what I mean! I don't think the Q-tip test is all that accurate either. My doctor just relies on that to diagnose me and nothing else. I went to another doctor and she sent me to a pelvic floor therapist although I kept telling them it's not muscle tightness that is giving me an issue. I'm almost positive it is hormonal because I can track on a calender how bad my pain will be. It is 90 percent gone when I ovulate and progressively gets worse as I get closer and closer to my period. I have a feeling it is a low estrogen problem and my doctor put me on low dose birth control of all things. When I take them I have pain all month.

Do you know of a website I can go to that can refer me to a specialist? I live in the midwest and we don't have that many specialists around here

Hey Katie,

I live in Florida and just went to an amazing doctor here today- I feel like he's going to be awesome and he's a specialist. There is also another specialist in Orlando (I didn't like her) and another one in D.C. and New York. This is definetely something that can be made better. And acupuncture has helped me a lot. Message me if you need any advice or the doctors names that I have used. Be careful I was put on 27 scripts and acycolvir which is a herpes drug, I don't have herpes! They said it could help. This doctor said it was BS. So be careful, and if it doesn't sound right it probably isn't. Don't put lots of stuff up there it irritates it worse.