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Faf

Thank you for sharing such detail about your story so openly. Your descriptions of pain made me cringe remembering just how bad it was. I am relieved to see things are getting so much better for you.

There are so many of us out there, I hope more people will have the courage to open up and share to gain more knowledge about these secret conditions.

Thankfully, I also had an incredibly supportive boyfriend through my time with vulvodynia. I completely agree-- it affects both partners dramatically. But I will also say that I didn't appreciate people saying "your poor boyfriend" when I would dislose my inability to have sex because of my pain. What about us-- the direct sufferers? I felt like some people were too disconnected to understand.

Alison Beaver

What a great post--thank you for sharing such a personal story!

I have a question about your hormone levels, as I don't understand why a lab/doctor could not figure this out. Specifically, it sounded like you did get your hormone levels checked with one doctor, who (based on pre-deteremined laboratory measurement criteria) said that your "levels fall within normal range", but all other indicators of experience was saying otherwise (feeling less pain during pregnancy, for example). Your naturopath was able to figure out/assume that your hormone levels were low, without the lab results. Can you explain this more? Do the pre-determined levels need to be reconfigured, to help more women be properly diagnosed? What tools did your naturopath use to determine your low hormone levels (besides common sense?)

thanks!

Anonymous

Hi Alison,
Thanks for the question! My naturopath actually did retest my hormone levels, but took my whole picture of health into account when determining that they were too low, rather than just look at the absolute number (although even that was lower than when I had the first test done).
But the "normal range" is so vast, a range of hundreds of points, that it almost doesn't make sense to even have a range. It's hard to know where you fit and what is normal for your body when there is such an expanse of possible hormone levels.
It makes me wonder how much we really know about women's health and how much is still guesswork. Lots more research needs to be done!
Wishing you health,
Alexandra

Anonymous

I agree completelely Alexandra. I also watched a video on EmpowHer just yesterday addressing this exact concern about hormone range accuracy: http://www.empowher.com/share/hormones-and-endocrine-system/thyroid/vide...
Very interesting.

Susan Cody

and everyone else who has shared their story.

I had never heard of Vulvodynia until it was first talked about on this website.

How strange that something that affects up to 10% of women in their lifetime remains so unknown by so many.

I hope this condition can be 'fixed' and better understood, for all the women who suffer from it. More and more, I realize how crucial hormones are and how they can affect us when they skid off the rails.

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