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Posted Oct 20 2009 5:25pm

This is my first post. I was sorry to see that there is not a community for women with pelvic pain. I was diagnosed with vulvodynia about a year ago. I was one of the lucky ones in that the second gyn I saw diagnosed me correctly. I know that many women go through many doctors before getting a proper diagnosis. 

This disorder has changed my life. I cannot wear underwear without pain. I cannot ride my bike or sit flat.  I am forced to wear dresses or skirts with nothing underneath. And naturally, sex is out of the questions. As a single gal with this disorder, I am very frustrated and scared of the future.

There is another blogger on here who has expressed herself beautifully- I can relate to everything she says. Brieee is her nic, and her blog posts are extremely candid and describe what life is like with this condition.

I feel like my friends cannot really comprehend what this is like. I have tried countless medications and treatments that I've lost track. I feel like my life is on hold.

I want to be able to talk about this condition openly. I can't say - oh my vulva is stinging today- when ppl at work ask how I'm doing. It's the secrecy of this thing that is so difficult.

I think the emotional pain of this condition is a million times worse than the stinging, burning pain.  To have to keep something secret- to have a condition that no one has heard of... a condition that affects 18 percent of women!

For the first time in my life, I feel like a second class citizen as a woman. If this were penildynia, you can bet your life that a ton of research would have been done on this condition and a cure would have been found by now.

There has been so little research on vulvodynia, and so little education of the public. It is a CRIME!

No woman should have to go through this alone. No woman should feel shame for something that is NOT HER FAULT...

No woman should have to suffer through painful sex to please her partner. OMG- can you imagine a guy suffering through this- can you imagine a guy crying silently while having sex to please his partner?

I DONT THINK SO! THE guy would stop immediately and say my penis hurts.

So why in the hell should women be expected to suffer through pain to please their partners. That is disgusting! 

We must get the word out about this! WE must! No woman should be told that the pain is in her head!

I welcome any feedback! I am determined to get the word out about this!

It's a crying SHAME!

SHAME on the doctors who misdiagnose this!

Shame on the friends, partners, etc. who don't take the time to research this illness before passing judgement!

Shame on the media for shying away from this!

Ads all over the TV about meds for erectile dysfunction- horror of horrors...

But a pelvic pain condition that affects 18 percent of women in their everyday lives-

There is only silence!

No more I say! No more!













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