PCOS: A Disorder By Any Other Name Would Still Be as Sucky
NIH is recommending that the disorder PCOS, which can be a cause of infertility, be renamed to make the parameters of the disease clearer. I want to stress that “can be” because just as NIH is stating that the name can become an impediment to understanding and diagnosing the disease, PCOS itself is so misunderstood that many believe once they have a diagnosis in hand and start Googling that PCOS is an automatic, do-not-pass-go route to infertility. It’s not, though it is a very common cause of infertility.
The best explanation I’ve ever read about the disorder and the history of defining the disorder came from Shady Grove. In that article, Greenhouse also discusses all the former names of the disease, because this wouldn’t be the first time it has switched names. It has been called Stein-Leventhal Syndrome, Syndrome O, Syndrome X, and functional ovarian hyperandrogenism (because the base of the diagnosis is elevated androgen levels).
The largest chunk of me is for the renaming, mostly because I think having “ovarian” in the name creates a mental limit as to the long-term effects of PCOS. This isn’t a disorder that falls into the background when you’re finished using those ovaries to build your family. It’s the disease that keeps giving, creating a plethora of lifetime issues, such as problems utilizing insulin which can lead to a greater incidence of diabetes, another disease with long-range effects. You’re at a greater risk for the largest killer of women: cardiovascular disease. So yes, I think taking the emphasis off the ovaries in order to convey that women with PCOS need to be concerned about a lot more than family building is important. Which is not to diminish its effect on family building. I am only pointing out that this disorder has its fingers in so many other areas of the body than the reproductive organs.
And yet, we just finished talking about how names are important, names define us, names are more than just a mass of sounds that convey what we’re talking about. It’s disconcerting to have a name change. This disorder has weathered name changes before, but all of those changes took place long before the disease found its way into the collective consciousness of the infertility community. In entering our brains, in becoming a commonplace term that we know and understand even if it’s outside our own diagnosis. There is also a sense of ownership that comes from usage. There are still places I call by their old name, even when someone formally changes the building’s moniker.
What do you think of changing the name of PCOS?