I have been dealing with burning and itching for years now. I have done everything and have gotton relief from anti depress. I have 6 years of no symptoms and got a bacteria infection and it has started all over again. As a child I suffered with eczema all over my body including in the vagina area. My skin is very sensitive. My new treatment I am trying and has givining me big relief is soaking in hydrogen Peroxide. Not the one you can buy in the store. It has to be 35% and you can only get it on line. As I read everyones comments I feel for each and everyone woman that deals with this. It really helps to hear other peoples comments and makes you feel not alone. I hope my treatment can help some one
Posted by: rgamlin April 29, 2009 5:42 am

I have seen over 10 doctors from gynecologist to dermatologists.. I've seen Dr. John Willems at Scripps in Carmel Valley, CA he does treat women with Vulvodinia and does take the time to listen to you... I've been dealing with this burning feeling for almost 3 years.. the only relief I get is from taking Desipramine which has helped the burning pain significantly. I got a recommendation from the NVA for a dermatologist in Santa Barbara Dr. Kemplerer and she does specialize in Vulvudenia.. she actually has a questionare with most of the vulvudenia symptoms. I guess my reason for naming the dr. is because to some degree I have had some success.. Not cured but hoping for one day. The Desipramine has really helped with the burning to at least live a somewhat normal life... I still have the raw feeling but not as bad as I used to. You can sign up the National Vulvudenia Association and they have referrals to specialist and sometimes they do studies where you can volunteer. Just go to NVA.org for more info.
Posted by: Dani April 5, 2009 5:48 pm

I was diagnosed with vulvodynia at the age of 23. I saw at least 100 doctors for this condition. I had at least 15 surgeries for this condition from 1987 to 1995. The end result of all of these surgeries was that the pain moved from the outside on the vulva area to the inside of my vaginia. The pain inside the vaginia was so bad that I had to take large amounts of narcotics. In 2007, I began to develop bladder symptoms such as pain in the urethra and constant pressure in my bladder. I saw a urologist at the University of SanDiego ( Dr. Lowell Parsons) who specializes in Interstitial Cystitus in February 2008. I was diagnosed with Interstitial Cystitus. Since I have been treating my bladder for this disease, the bladder symptoms have disappeared and the vaginial pain is so much better that I no longer have to take narcotics for pain. My problem has always been Interstitial Cystitus. This disease can cause referred pain in the vulvar area and vaginia. I believe that many Vulvodynia suffers suffer from Interstitial Cystitus and by sucessfully treating your bladder, the vulvar pain will go away. I did not experience bladder symptoms for 23 years with this condition. Therefore, I believe that many women who believe that they have vulvodynia really have Interstitial Cystitus.
Posted by: dgordon February 10, 2009 5:10 pm

It started about 15 years ago and has constantly gotten worse as time goes by. Several doctors acted as though it wasn't there because they couldn't find anything in the lab. I was also told at one time that it was herpes but then it was recinded.
Posted by: SIS February 6, 2009 4:13 pm

Burning, stinging, raw, all sort of go together for me. It used to be in the vestibular area and now it is external as well.
Posted by: Bedelia February 6, 2009 4:03 pm

Sometimes when I wear pants.
Posted by: jocasa February 6, 2009 3:32 pm

I have been going bonkers for quite some time now. It all started when I was younger--maybe 6/7 years ago when I felt a burning sensation like I had to pee all the time. I went to several doctors--I've never tested positive for a bladder infection ever. Then, I'd start to get the burning feeling around my vulva and at the entrance of my vagina. So annoying! I was treated with rounds and rounds of yeast infection treatments as well as bacterial infection treatments--even though the tests didn't look like I had an infection, I never had discharge, and never had any strange odor. Lately I went for a 2/3 month streak of the burning. I asked a friend who's a doctor what he thought--he sent me to a family practitioner who tested me, said there was nothing wrong, and that I should find another doctor. I have been given "looks" by 3 different gynecologists, been to a urologist, and talked to 2 family doctors. I thought I was going mad--so I started doing research on the Internet. I had never heard the term vulvodynia before two days ago. I have a burning sensation all the time, I will wake up in the middle of the night with it, and it is getting in the way of my sex life. I'm perfectly willing to entertain the psycho dynamic/hormone imbalance possibilities also. I've had a long history of reproductive issues including being put on the pill at 15 because my testosterone levels were high, having an ectopic pregnancy and having to have it terminated--much to my husband and my anguish--having fertility treatments (taking Clomid)--and having an ovarian cyst removed as well as some endometriosis (spell?). I want children badly--we're trying to adopt. Is that my problem? Anyway, I would love to figure out the friggin' problem. I'm looking into the diet thing--Acid/Alkiline etc. I am so thankful for the Internet and all these blogs--at least I don't feel crazy anymore, and maybe we can all help each other
Posted by: juniper February 4, 2009 7:06 pm

only after sex.
Posted by: Cara_Rouge January 23, 2009 7:12 pm

I have had constant and unrelenting pain in the vestibule as well as the clitoral hood, and the vulva. The pain is unbearable at times, and brings me to tears with the burning, stabbing, tearing, and throbbing sensations. I have an incredible doctor, very understanding, who has placed me on neurontin (gabapentin) after trying everything from lidocaine on cotton balls, interferon shots, topical steroids, calendulla cream, baking soda sitz baths, to boric acid, and even manual pelvic floor disfunction therapy. I developed these symptoms after breaking my pelvic bone in a car accident while pregnant with twins. That was a year ago, and I still have not found relief. I have not and can not even bear the thought of attempting sex, as I cannot even wipe the area after urinating without tears.
Posted by: Roxi January 23, 2009 5:48 pm

I only have serious problems with sex or paps. So far my very limited sex life has been the most painful thing I have yet to experience. There aren't really words to describe this pain, especially since it's supposed to be wonderful I am currently working with a doctor to help figure things out, but I agree with cdhen they are very quick to give you meds and that's all!
Posted by: lucymolly18 January 23, 2009 5:09 pm

I have my good days and bad days. I wish the doctors would do different tests like checking for changes in hormones , check for high levels of oxalates, etc. I feel like they are too quick to just give you medication. I don't feel like they take the time to really help you.
Posted by: cdhen January 13, 2009 4:01 am

Had what seemed like burning 24/7 but then went to see dr. and she prescribed an anti depressant medication and that has helped so much... I almost feel normal on some days.
Posted by: Dana November 20, 2008 8:50 pm

The type of burning varied from moment to moment. Some days it felt like hot sauce, some days it felt like fire, some days just felt warm and irritated. I would try to fan it or apply ice to keep it cool, but it just wasn't a superficial kind of "burning." It was too deep and internal to cool.
Posted by: zallers October 4, 2008 7:48 pm