Vulvodynia

In September, 1999, I was diagnosed with Vulvodynia after suffering for 2 months with intense swelling, pinching, tingling, and ripping sensations, 24 hours a day, 7 days a week.  Before I was finally diagnosed I saw - one family practitioner, my then - current gynecologist, and finally the gynecologist that diagnosed me.  After hearing, "yes you look swollen but it probably is just your detergent", and, "well I don't see any signs of a yeast infection, but I am going to give you some suppository yeast medication anyway" and after trying every prescribed Herpes medicine (even though I tested negative for the disease), I decided to comb the Internet for help.  Through an Internet referral from a STD site, I found the doctor who diagnosed me.

After the initial shock of the diagnosis wore off I thought to myself, " Okay, we live in the information age, I will go to the Internet".  I typed the name of this disease in the search engines. I thought I would find doctors and medicines and whatever I needed to help me cope with this disease.  However, I learned there was little to no information available.  I remember the pain I was in, the flares I had almost everyday for hours with no relief.  I was taking a low dose of anti-depressants, (to help dull the nerves so that the pain would lessen,) nothing was helping the flares (severe swelling) and with what little energy I had left after battling the pain all day long, I would get on the Internet and try (in vain) to find information on possible treatments.  The process was exhausting!

I was tired of jumping through hoops to get help, information and support.  I felt there was a void and I was determined to fill it; and so around October of 2000 I launched VulvodyniaSupport.com. No woman should have to go through what I and the thousands of women before me have had to go through to get information and help.  Vulvodynia Support is set up with a Medical Directory (with National and International listings), Support Groups (with National and International listings), Links, Useful Answers, a Free Exchange message board and an Open Letter to sign.  If you are suffering from or think you are suffering from Vulvodynia, you need not feel that you are alone.

 I have heard that I am a champion in the Vulvodynia community and I have gotten many emails thanking me for speaking up.  Personally, I don't see anything I am doing that is out of the ordinary.  I really can't imagine handling this disease any other way. To all the women who have written to me over the past two years thanking me, I wish to thank them back.  Developing Vulvodynia has been life-altering.  Being an outspoken voice in the community seems like second nature to me.  This disease robs us of any normalcy that others have.  My goal is to bring awareness about this disease to every woman. Sometimes, in doing so, I worry about scaring the ones that think they are suffering from Vulvodynia, because the fact remains that there is no known cause or cure, and there are only band-aid type treatments at best.  But while I cannot offer hope for immediate relief, I realized that what I could offer was much-needed support.

For more information about Vulvodynia, please visit Vulvodynia Support and the National Vulvodynia Association.

Lauren Kunis graduated from Hunter College (CUNY) in 1995. She has worked in Customer Service and Account Management.  Currently, she's enjoying a career in web design and is the founder of VulvodyniaSupport.Com.

Created: 7/25/2001  -  Donnica Moore, M.D.