Is Grassroots Always a Good Thing?
The PCOS community, whether it be for advocacy or just informational resources, has a strong grassroots foundation. At its heart, PCOS is one of the best-kept medical secrets EVEN THOUGH it is one of the most common hormonal disorders for women and girls of child-bearing age. The only way for many women, before PCOS started its long and hard crawl to being closer to top-of-mind awareness, to find information about the disorder was to search endlessly online, or to connect with others via forums, bulletin boards, etc. When I was first diagnosed in 2001, the Internet was the first place I turned to learn more about what was happening to my body. Through resources like Kat Carney’s Soulcysters and international sources like WebMD and the Mayo Clinic’s online presence, I found a plethora of information.
Fast-forward a few (ok, not-so-few) years and I believe PCOS as an issue, as an image, as a state of awareness, is stuck in a bit of rut. Yet a number of just-as-important chronic illnesses have managed to attain and maintain that top-of-mind recognition. Look at arthritis, breast cancer, diabetes. Each of these illneses or disorders great recognition surrounding them. What’s holding PCOS back?
To be honest, I think there are a few issues that are holding PCOS back from this top-of-mind awareness. First, confusion regarding the actual source of the disorder causes many of the issues problems. The PCOS disorder does not necessarily spawn (no pun intended) from the ovaries, but is a complex hormonal disorder affecting estrogen, testosterone, androgen, insulin and other hormones in the female body. Recently, some endocrinologists have started discussion as to a renaming of the disorder to a focus on androgen excess. The gynecological problems associated with PCOS, for instance, are a symptom, not a cause.
Secondly, I think it has taken a while for women dealing with PCOS to feel empowered and, frankly, gutsy enough to come forward and talk about their ordeal with the disorder. It’s not considered great party discussion to share with your friends and aquaintances in such a fashion to say "oh yeah, my period is never regular and oh by the way, I fight with facial hair." Because of the embarrassment our society associates with bodily function (or misfunction, in this case), my example might bring a swift end to the soiree.
Regina
December 4th, 2007 at 1:19 pm #
I totally agree with you – with 1 in 10 women believed to have PCOS, and the vast majority walking around undiagnosed and unaware, it’s a travesty for women’s health!
Pcos
January 1st, 2008 at 7:43 pm #
Hello! This is a good site a lot of information.
I have got hungarian pcos webpage:
http://www.freewebs.com/pcosvagynem/
Good luck!