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VULVODYNIA- SPEAK UP!

Posted Aug 31 2010 3:02pm

Blogging again.

Okay, so what category does vulvodynia fit into? Chronic pain? Relationships and sex? Where?

It should fit into Chronic Pain IMO. There is too much emphasis on this being a sexual disorder and although that's a part of it, It is mainly about PAIN. Pain that is unmentionable in public.

Calling it a sexual disorder makes it sound like something psychological. And as  many sufferers can attest, they've seen countless doctors who tell them the pain is in their heads.

SHAME SHAME SHAME SHAME on the medical community and the MEDIA.

Thank goodness I didn't have any doctors tell me some kind of bullshit like "it's all your head". i was lucky. my regular gyn believed me; he just misdiagnosed me with everything under the sun except vulvodynia. He was kind but clueless.

I got a second opinion and this Gyn was smart. She did the q-tip test pronto, and diagnosed me right away. Only problem was that she did not know how to treat this properly. I only know this because I did the research and found out that topical steroids are a NO NO for vulvodynia.

So, then I was off to the vulvar specialists and got partial relief. I just am not willing to have the surgery. Perhaps one day, I'll get desperate enough for that.

So, where is this blog going. I don't know. I'm just angry and frustrated. Is that better than despairing and depressed? Who knows?

Why is there not more research into this?!

It's because it's a female disorder that is not life threatening and is underdiagnosed because of clueless physicians and women who are afraid to speak up and so they suffer silently instead. Perhaps some clueless doctor told them their problem was psychological. How insulting and cruel. My heart goes out to these women.

And why are the physicians clueless? Why don't Gyns learn about this in Med school? It's not a rare condition. 15-18 percent encompasses a high percentage of women. And why isn't this disorder discussed in high school sex-ed classes? C'mon- let's educate women and men!

Now let's see...bipolar disorder affects 1 percent of the population. And that disorder is a household word.

How many novels or movies or tv shows depict sex as painful? Few to none. Why???

It makes us feel like "freaks". That's just wrong.

Oh and btw, I hate men today.

I keep hearing about these wonderful, supportive partners that V patients have found... that's good...

but I believe that it's this male dominated society that has kept this disorder  in the dark...

A woman experiences pain with sex therefore she is "frigid"... unless gyns can find a concrete explanation like yeast, bacteria, fibroids.

I think half of our suffering is due to an uneducated public and uninformed physicians...

Rant of the day...

Oh, to be able to put Capsaicin (extract of hot chili peppers for those who don't know) in my bfs underwear...

I'm not a vengeful person by nature, but I am in this case... :)

Everyday, I spend an hour doing a whole protocol of applying Capsaicin to my vulvar vestibule in hopes that it will kill off those nerve cells. There is research showing that it works...

We shall see...

I could not have done this treatment last year. I was too emotional. Now,  I am stronger and hoping to burn off those nociceptors and burn my bfs memory off of my vestibule- forever!!

 words of wisdom?

Keep living your life to the best of your ability.

Be compassionate.

Keep fighting.

You are your own best advocate.

Question your doctors mercilessly.

Fight!

and be humble as well...

Humility and Persistance...

I'm an activist by nature. 

It's the only way to get some decent treatments for this thing!

Open to any ideas?? anyone??

Gosh, do any men read this?

Sigh... vulvodynia is a lonely disorder... pain that you can't talk about without embarrassing everyone...

I've told one person at work. Not the details- just the name of this pain disorder.

I've told almost all friends.

I will not be silent.

We cannot be silent.

We cannot! 

 "Your silence will not protect you"... ahhh who said that...

"All it takes for tyranny to gain a foothold, is for people of good conscience to remain silent"...

Speak up!

 

 

 

 

 

 

 

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