Whats in a Name? There’s more to PCOS than cysts…a lot more!

Hormonal Imbalance Symptoms Women

Polycystic vs Normal Ovary Image credit: alila/123RF

Ever since I realized that my mood swings were actually “postpartum depression” I’ve been interested in how and why medical disorders not only get their name but keep their name over time as new information emerges.  I recall discussing my medical history with a doctor and telling her that I had terrible mood swings after my second daughter’s birth.  Although I wasn’t diagnosed at the time, she suggested that, indeed, I probably had suffered from PPD.  I told her that the name should be changed!  I knew there must be other women suffering in silence because they don’t even know that it’s postpartum depression.  She told me the name had been changed to Postpartum Mood Disorder.   Now that I do research in this area and am more aware I see that perhaps the term Perinatal Mood Disorder is even more accurate because it encompasses mood disorders during pregnancy as well as in the postpartum period.  I wish people would start using either of these more encompassing terms – because there’s a lot to a name.

In fact, the ramifications can be huge and here’s an example:

The National Institutes of Health in the USA put together a panel to make recommendations about Polycystic Ovarian Syndrome (PCOS).  The panel came forward with several recommendations the first of which was suggesting changing the name of  Polycystic Ovarian Syndrome (PCOS).  You can read more about that here.

Here’s an excerpt from the panel’s recommendations:

We believe the name “PCOS” is a distraction and an impediment to progress.
It causes confusion and is a barrier to effective education of clinicians and
communication with the public and research funders. The name focuses on a
criterion—polycystic ovarian morphology—which is neither necessary nor
sufficient to diagnose the syndrome. We believe it is time to recognize the
advances that have been made since the description of the syndrome by
Irving F. Stein, Sr., and Michael L. Leventhal. It is time to expeditiously assign
a name that reflects the complex metabolic, hypothalamic, pituitary, ovarian,
and adrenal interactions that characterize the syndrome—and their
reproductive implications. The right name will enhance recognition of this
major public health issue for women, educational outreach, “branding,” and
public relations and will assist in expanding research support.

So I doubt that the panel realizes but there is already a more appropriate name being used:  Anovulatory Androgen Excess (AAE).  This term is used by CeMCOR – the Centre for Menstrual Cycle and Ovulation Research and the Scientific Director, Dr. Jerilynn C. Prior who is also Professor of Endocrinology and Metabolism at University of British Columbia.  Here’s what Dr. Prior says about AAE as opposed to PCOS:

“AAE is more descriptive of the basic issues like not releasing an egg or making progesterone and on the higher than normal male hormone levels (androgen excess). PCOS usually gets treated like disease, but we consider AAE to be reversible, so that a woman with appropriate treatment can regain regular cycles, get rid of acne and unwanted hair and go on to have normal fertility and a healthy future.”  

I’m certainly not an expert on PCOS but I know that it is a complicated health concern affecting a large number of women and has further health implications besides what most people think of as just cysts on ovaries.  Infertility, miscarriage, diabetes, high cholesterol, mood disorder, male pattern baldness, obesity, acne, facial hair are all possible factors related to PCOS.

I am interested to keep an eye on this medical name change because I think there is a lot to a name and it will be interesting to see over time if more attention is given to this huge health issue for women.

Stay tuned for more info on AAE (formerly known as PCOS)….