Why PCOS Is Ignored

Why PCOS Is Not Getting Attention and What Needs to Be Done About It

kristian sekulic/E+/Getty.

First described in 1935 by gynecologists Irving Stein and Michael Leventhol, Polycystic Ovary Syndrome (PCOS) affects approximately 10% of women in the U.S. population, making it the most common endocrine disorder in women of reproductive age. Yet PCOS is a condition that often gets overlooked by physicians. Frustrated, most women with PCOS have seen several doctors before getting their diagnosis.

Many people haven’t even heard of PCOS before and look at you as if you grew an extra head when they do hear its name for the first time. Why isn’t PCOS getting the attention it deserves? Here’s 4 primary reasons preventing PCOS from getting more attention and what can be done about it.   

Lack of Funding

The United States spends an estimated $4 billion annually to identify and manage PCOS, representing a major health and economic burden. The majority of women with PCOS are overweight and suffer from insulin resistance.  If left untreated, PCOS can progress to type 2 diabetes and other chronic diseases. Early detection and treatment are critical for preventing weight gain and the onset of metabolic conditions. While much more is known about PCOS since its discovery in 1935, many more questions remain. Doctors still don’t know the best ways to treat it, the best diet for PCOS (if there is one), and if it can be prevented.

Unfortunately, advancements in understanding and managing PCOS will be limited as the National Institutes of Health (NIH) has instituted budget cuts. The NIH provides funding to scientists to study conditions like PCOS. Without government funding, we won’t be able to really understand and effectively treat PCOS.

The NIH is also responsible for forming and supporting national associations, like the American Diabetes Association. While PCOS does have several patient advocacy groups, it doesn’t have a government-funded organization to establish evidence-based information and to create awareness.

Varying Presentations of PCOS

Not all women with PCOS are the same. While women with PCOS may have similar symptoms, they can vary in their severity and presentation. This variation in women can result in medical professionals overlooking a PCOS diagnosis by focusing on treating the problem women most want help with. For example, a woman may have acne on her chin that won’t go away, so she seeks the advice of a dermatologist who treats the acne. The same woman may also seek the advice of her gynecologist because she stopped getting her period. Better communication between providers is needed to bridge the gap.

The Name PCOS

In December 2012, the NIH Office for Disease Prevention-Sponsored an evidence-based methodology workshop on PCOS, during which the recommendation was made to change the name of the condition now known as PCOS to one that doesn’t focus on the ovaries, which are only one small part of PCOS.

It has been suggested that there should be two names for PCOS: “those with primarily reproductive consequences should continue to be called PCOS, and those with important metabolic consequences should have a new name.” So far, the names that have been suggested as potential contenders for the metabolic phenotypes are Metabolic Reproductive Syndrome (MRS) and Metabolic Ovarian Reproductive Syndrome (MORS).

What Diagnostic Criteria to Use

Another issue explaining why PCOS isn’t getting more attention and gets overlooked is the confusion surrounding how to diagnose it. Currently there are three different sets of diagnostic criteria used to evaluate women with possible PCOS.  The criteria used may depend on the physician’s knowledge base and area of practice, as well as the desired treatment (i.e. restoring a normal menstrual cycle, weight loss). While it was suggested at the NIH Workshop to use the Rotterdam Criteria, not all practitioners have adopted this method.

Sources:

Evidenced-based Methodology Workshop Executive Summary. Washington D.C.: National Institutes of Health; December 2012.

Dunaif A1, Fauser BC.Renaming PCOS--a two-state solution. J Clin Endocrinol Metab. 2013 Nov;98(11):4325-8.

Continue Reading