by Lauren Kunis
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
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
For more information about Vulvodynia, please visit Vulvodynia
Support and the National Vulvodynia
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.