VULVODYNIA


By Lauren Kunis

              "Statistics show that 20% of women are suffering from Vulvodynia. Women
living with Vulvodynia experience daily vulvar pain such as pinching, pulling, swelling
and throbbing, any of which can interfere with a woman's daily functioning (such as
sitting and walking), and most other physical activity (including engaging in sexual
activity). Many women with Vulvodynia often quit or lose their jobs due to excessive
absenteeism from the jobs they were holding when the disease struck."

              You may have heard the word whispered on Sex and the City by the character
Charlotte, and if you are someone who pays attention to minor details you may have seen a
small article with the word in it. But if you are like most women and doctors for that matter,
you have not heard the word Vulvodynia before.

              So what is Vulvodynia? Literally Vulvodynia means vulvar pain. I am a woman
living with this disease. I have been living with Vulvodynia since 1999. I developed Vulvodynia
just after my 28th birthday. I have experienced daily vulvar pain such as pinching, pulling,
swelling and throbbing, which interfere with daily functioning (such as sitting and walking),
and most other physical activity (including engaging in sexual activity).

              While I applaud HBO for taking on the subject of Vulvodynia in the summer of
2001 and using humor to get people to take notice that this disease actually exists, the actual
fact of the matter is that many women with Vulvodynia often quit or lose their jobs due to excess-
ive absenteeism from the jobs they were holding when the disease struck. These limitations
can lead to depression and even thoughts of suicide.

              Living with Vulvodynia can be very isolating. Unless you have this disease or meet
someone else who is willing to admit that they too have this disease you cannot really share your
daily experience with anyone. Most of us have been brought up understanding that talking about
our “privates” is just not acceptable. This idea of forced silence really angered me. It was bad
enough to be told by my doctor that I would be considered the expert. How was I supposed to get
better if I was the expert and information could not be shared openly and freely?

              During the year 2000 I decided to start my own Website, www.vulvodyniasupport.com
to disseminate as much information on Vulvodynia as possible. I spent the past year living in
excruciating pain, crying and searching desperately for help. I joined the National Vulvodynia
Association (NVA) and I even went to one of their local support groups in New York City, where
I live. However I found the experience disappointing. About five women showed up to the
meeting and it seemed to be a place to complain and vent more than share what had worked for
them. The symptoms that the other women spoke about didn’t even seem to match what I was
experiencing and when it was my turn to speak I remember the stunned expressions on their
faces. It was like watching people who were watching a horror movie.

              Vulvodynia Support was created to fill a void that I felt existed at the time of my
diagnosis. I wanted to have a place where women could come and freely leave their feelings as
well as information that they learned either helped them or did not, through trial and error. It was
important to me to have easy access to information on Support Groups and a Medical Directory
without having to be a member of my site. Vulvodynia Support.com is a place where women and
men can come and surf in freely as much or as little as they want. It was created for patients from
a patient’s perspective and does not accept solicitations from doctors or pharmaceutical
companies.

              Statistics show that 15%-20% of women worldwide are suffering from Vulvodynia.
According to a published survey by Dr. Bernard Harlow PhD of Brigham and Women’s Hospital
in Boston, MA it is estimated that 10 million visits to the gynecologist each year are Vulvodynia
related (See article). Vulvodynia has been known about for over 100 years; however, the cause
of this disease is still unknown.

              Vulvodynia Support advocates taking charge of your own health and healing.
Unfortunately there is not enough known about the cause or proper treatment of this disease.
Each woman is the expert. We have to learn to listen to the clues and signals our bodies give us
in order for each of us to heal properly. There is no cookie cutter way of treating Vulvodynia.
What has worked for me may not work for you but by listening closely to the details each woman’s
story we may find similar patterns in our own health history which could help each of us decide a
path to take in order to begin the healing process.

              I was very lucky because I had my friend Diana whom I had met online who also had
Vulvodynia. Diana was a tireless researcher and would email me tons of information about
different angles that could possibly be causing my Vulvodynia. Because of Diana, I found
information on a Yeast Connection to Vulvodynia. For me the symptoms and signs seemed to
add up. I learned that yeast causes stomach problems such as Irritable Bowel Syndrome (IBS),
tiredness, irritability, and skin problems. As a child I suffered from severe IBS, as a teenager I
was always tired, and in my recent adult life I have suffered from acne. I was also prone to yeast
infections. Learning these facts I decided that I wanted to try herbal yeast cleansing. This method
of treatment has worked very well for me and has kept me almost completely pain free for more
than two years.

              The sad facts of this disease still remains that for the majority, pain is a daily part of life
and most women with Vulvodynia are still searching for a way to rid themselves of the agony that
controls every move they make.

              I am hopeful that things will change very soon. Recently I have begun to see the start of
interest in research that will eventually bring us to a better understanding of the causes of this
disease. Those who do not experience pain on a daily basis cannot ever understand how crippling
this can be. With research finally starting, the lives of women worldwide may finally be freed.



Lauren Kunis is a freelance writer available to write on women’s health issues and Op Ed pieces.
She has been published in the New York Daily News Voice of the People, Dr. Donnica.com, and
Sexualhealth.com. Lauren has been interviewed by national newspapers on the subject of Vulvodynia
and is a tireless advocate for more research to learn the cause of the disease.