A pain in the kecks: speaking out about vulvodynia

1/20/2012

Imagine having to deal with chronic pain every hour of every day. You don't know what caused it or if there will ever be a cure. Then imagine that this pain is on your fanny. This can affect your health if smear tests are hard, your relationships and be hard to talk about. Open Foumer and writer Liz talks about her battle with vulvodynia.

I was just 16 years old when I was diagnosed with vulvalvestibulitis. I had only recently become sexually active and within a matter of months, sex became so painful that I was forced to stop completely. After a barrage of tests which all came back negative, I was relieved to have my diagnosis and assumed this meant that I would soon be back to engaging in pain-free nookie.

Unfortunately vestibulitis, now known as vestibulodynia or localised vulvodynia, is not that simple. It is a condition whereby the skin of the vestibule (area between the inner labia) becomes painful to the touch, for no identifiable reason. Intercourse becomes extremely painful. While treatments do exist to help control the condition, there is no cure and finding the right combination of treatments is very much a case of trial and error.

I have now had vulval pain, to one degree or another, for ten years. During this time, the localised vulvodynia has morphed into generalised vulvodynia, whereby the pain is more widespread across the vulval region and tends to be continuous. Like many women with this condition, I find that sitting for any length of time worsens the pain. This may sound like a rare condition but a recent study showed that over 25% of women suffer from vulvodynia at some point in their lives.

The medical community has been slow to acknowledge vulvodynia; the very term was only coined 34 years ago and research is still pitifully sparse. The first hurdle facing women with vulval pain, therefore, is getting a diagnosis. Many doctors have simply not heard of this condition or know very little about it. Less than 2% of the sufferers in the study mentioned above had managed to receive a diagnosis.

If you are diagnosed with or suspect you may have vulvodynia, finding a helpful doctor is extremely important, but so is having a solid support network. Vulvodynia is a chronic pain condition and comes with the same elevated risk for depression as any other such condition, along with the added stigma of being in such an intimate area.

Many women have trouble talking to family and friends about this problem and so support from fellow sufferers can be invaluable, as can groups such as the Open Forum. I recently ventured out to one of the meetings and being able to talk out loud about my fanny problems was fantastically liberating.

Problematic nethers should not have to be a dirty little secret, but if we struggle to talk about our fannies when they are healthy, how are we going to do it when they are not behaving as we would like? When we can talk to each other and medical professionals about our lady parts without embarrassment, we will be on the road to a world where women understand the beautiful complexity of their own bodies and feel empowered to demand the prompt medical attention they need when things go wrong.

For more information on vulvodynia, visit www.vulvalpainsociety.org
For support from fellow sufferers, visit www.vulvodyniasupportforum.com
Liz blogs about things that aren’t vulvas at www.webofliz.blogspot.com

1 Comment

Aida Blanchett link

2/21/2012 12:30:40

Thank You so much for this post, Liz. I am trying too to spread the info about vulvodynia as best as I can here in Italy. I know your forum, I found it some time ago.
To all women, please never give up, and to everybody, please help us share the knowledge about this condition!
You can find me at my forum, on facebook and of course on Youtube, where I loaded some videos about vv (i.e. Vulvodinia.info channel, by Beodicea). I also made a medical Report named "La vulvodinia" http://www.scribd.com/doc/81599994/La-Vulvodinia which is currently going all over Italy. I hope to translate it in English as soon as I can.
We're many, and many, unfortunately, suffering from this desease.
I wish You the best,
Aida Blanchett

A pain in the kecks: speaking out about vulvodynia

Leave a Reply.

Sarah Berry

Sharing is caring

Past entries

Categories