I was renewing my NVA membership recently and the "Urgent Appeal to Vulvodynia Patients" on the home page caught my eye.
Apparently some studies on v pain have been cancelled because researchers couldn't find enough patient volunteers. Yikes!
For so long v pain was completely ignored by the medical community, so understandably many women are frustrated by the lack of attention and quality treatment options available. But now that they ARE beginning to research it, well by golly, we'd better step up and help out!
I mentioned an online study that you can easily participate in not long ago - you can find it the post about it here or jump right to the link here. You can find additional studies you may be qualified for through the NVA's web page on the topic.
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I can't help but wonder why researchers are struggling to find subjects. Is it because suffering women don't know about these opportunities? The cultural silence and shame around this topic would definitely help to explain that, and encourages me to continue to be the change I wish to see in the world by writing this blog, among other things.
Or is it that enough women know about the studies (again, doubtful)...but they are too shy or scared to step up? Is it because they are afraid treatments could make things worse, or the proposed treatment is somehow unappealing? Are they averse to being labeled, or coming out of the denial closet? Or do they just not prioritize v health, an understandable situation given the many pressures women face? (Note all of these reasons can be traced back to cultural shame and silence.)
If you are interested but concerned about volunteering for medical care that doesn't jive with your preferences, fret not: some studies are researching acupuncture, others looking into drugs, others are simply gathering data on the people affected. Peruse the listings, you might be surprised to see that there is something in your comfort zone. (Or ya know, in the neighborhood at least. Because nothing having to do with v pain is in anybody's comfort zone, amirite?)
It could be that there potential recruits who are willing but ineligible - for instance, studies often require that women are not pregnant or trying to get pregnant, or focus on a very specific set of symptoms or age bracket, or require that you aren't taking other medications.
Regardless of the reason, I would hate for the emerging research on v pain to fall apart because we the patients didn't supported it. Noooooooo!!!! That would suck so hard.
I strongly encourage you to consider participating in scientific research, for your health and those of others. Check it out! By participating we get to be each others' medicine. How cool is that?
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PS Did this post get your brain gears crankin'?
Feel free to start a conversation below (it's okay, you can be anonymous)!