Why the name "PCOS" is totally awful (and inaccurate)

I recently wrote this e-mail to the hosts of a podcast which I listen to over at HowStuffWorks.com, called Stuff Mom Never Told You.  The episode was all about PCOS and you know I had some thoughts about it!  :)

Hi Cristen & Caroline!

My name is Heather, and I am the owner of CysterWigs.com.  A long time ago, I responded to your podcast on alopecia, and you read one of my e-mails about how I shaved my head on a subsequent podcast … which was awesome!

I also wanted to say thank you for the podcast on PCOS, though I was a little sad that you didn’t dig further into the controversy about the name.  Many women think you need cysts on your ovaries to be diagnosed with PCOS, and that isn’t the case.  PCOS is mostly a metabolic and hormonal disorder with catastrophic reproductive side-effects, but the name of the illness is super misleading in that it obscures the real dangers of the disease: diabetes, heart attack, and stroke, all of which are not caused by the reproductive system.  There is a big brouhaha in the field of endocrinology right now because a lot of specialists in this disorder want the name changed to something less focused on the reproductive side of things.

http://www.nih.gov/news-events/news-releases/panel-recommends-changing-name-common-disorder-women

http://www.livescience.com/26548-pcos-new-name-patient-reaction.html

I personally see this all the time in my business because clients mistakenly think that a complete hysterectomy or menopause will cure PCOS … and it won’t.  PCOS is forever.  The cysts are a symptom, and not the cause of the disorder.  (The cause is still unknown.)  The inaccurate name and the emphasis being placed on the wrong things is such a pervasive issue that many doctors mess this up.  That makes this very frustrating for people with PCOS, because it’s not uncommon to go through multiple doctors before you’ll find one with any level of competency in treating the syndrome.  Most just want to give you metformin and birth control, tell you to stop eating so much, and that’s it.  The name (and the culture of paternalistic arrogance within the medical commuinty) allows them to be lazy about treating this as a serious disease that can substantially damage quality of life, cause disfigurement, and lead to early death.

Emphasizing the reproductive implications of the disorder does women a disservice because it allows many of them to live in denial about the potentially fatal consequences of this disease if not managed properly.  (Because if you’re not TTC, why worry about the fact that you can’t get preggers?)  It always makes me a little sad when people talk about PCOS and focus too heavily on the reproductive side of things.  It’s a systemic nightmare that impacts the entire body, from the top of your head (androgenic alopecia) to the tips of your toes (which you can potentially lose if you become diabetic).

I love you guys, though, and appreciate the conversations you have no doubt started about this topic.  More people need to know about this disorder since it affects so many women (1 in 10, approximately), and so many women live in denial and do not seek treatment for it until things get out of hand.  That’s the thing about chronic conditions -- they’re pretty insidious -- like Bugs Bunny in Elmer Fudd’s pot of boiling water, and all that jazz.

Thanks for all you do.