Polycystic Ovary Syndrome (PCOS) is a leading cause of infertility and is one of the most perplexing health issues of our time. In fact, because doctors aren’t sure what causes it, combined with the fact that women with this issue can present with a multitude of symptoms (which may not be the same from woman to woman), there has been a push for a name change for PCOS.
A health issue that directly impacts fertility, PCOS, was originally called the “Syndrome of Stein” and coined a “fugitive syndrome”, but currently goes by many other names:
- Polycystic ovary syndrome (PCOS)
- Polycystic ovary disease (PCOD)
- Polycystic ovaries (PCO)
Having metabolic risk factors or a metabolic syndrome is the reason why many women have PCOS and, as a result, researchers and healthcare providers are questioning whether metabolic-related PCOS might need another name.
PCOS – Why Leaving the Current Name is Complicated
PCOS is becoming an increasingly common fertility-health condition affecting women of all reproductive ages and has multiple presentations. It is a benign condition that is the most common cause of anovulatory infertility.
The challenge in diagnosing and naming it is that no two cases of PCOS are the same. The definition of “polycystic” is “having many cysts”, yet some women do not have cysts; rather, they have several of the other symptoms.
“Patients read into the name and just think, ‘Okay, this is about my ovaries, it’s really not about anything else…’ But from a doctor’s perspective, the most worrisome aspects of the disorder are the long-term consequences, such as diabetes.” – Dr. Melissa Goist, ObGyn.
Symptoms can include the following reproductive presentations:
- hormonal imbalance – often elevated levels of androgens, estrogen and luteinizing hormone (LH) and low levels of follicle-stimulating hormone (FSH)
- irregular menstrual cycles, or absent periods (amenorrhea)
- heavy menstrual blood loss
- enlarged ovaries and ovarian pain
- presence of multiple ovarian cysts
- excessive male-pattern hair growth (Hirsutism)
Many women with PCOS also have, or are at risk for experiencing:
- insulin-resistance which increases production of androgens
- high blood sugar
- cystic acne
- metabolic syndrome which increases the risk factors for heart disease and diabetes
- heart disease and high blood pressure
- chronic, low-level inflammation
- mood disorders – contributed to by elevated levels of androgens, hormonal imbalance and obesity
- endometrial hyperplasia and endometrial cancer
Although many women present initially with having high metabolic risk, metabolic syndrome and/or metabolism-related symptoms – insulin resistance, high blood sugar, obesity, high cholesterol, and high blood pressure – are not yet widely included in current diagnostic criteria.
According to the National Institutes of Health, “About one in three women with PCOS also has metabolic syndrome.” Although metabolic contributors are acknowledged by many healthcare providers, the symptoms and metabolic-related risk factors for this disorder are not identifiable on ovarian ultrasound tests, or apparent to radiologists/sonographers who are not trained to notice them. Prospective studies indicate that the form and structure (size, shape, or indication of past or present cysts) of an ovary alone does not identify those women with metabolic risk factors, or who have had past metabolic disease.
Should PCOS Go By More Than One Name?
A November 2013 publication in The Journal of Clinical Endocrinology & Metabolism titled Renaming PCOS–a two-state solution has brought to light that “It has become evident over the past 30 years that polycystic ovary syndrome (PCOS) is more than a reproductive disorder. It has metabolic sequelae* that can affect women across the lifespan.”
*Sequelae is defined as “a condition that is the consequence of a previous disease or injury.”
Radiologists and sonographers are well versed in seeing physical risk factors – cysts, enlarged ovaries and inflammation – but not in evaluating metabolic and hormonal risk factors, which the current diagnostic criteria for PCOS focuses on. Current diagnostic criteria come from two resources…
- The National Institutes of Health (NIH) – The NIH identifies endocrine system malfunction as a result of the presence of hyperandrogenism and chronic anovulation, acknowledging both as primary contributors to PCOS.
- The Rotterdam diagnostic criteria which identifies reproductive dysfunction (enlarged ovaries, multiple cysts, etc.) as the primary contributor to PCOS.
Researchers, scientists, and healthcare providers believe there is “rationale for a separate name for the syndrome that is associated with high metabolic risk…” In fact, the conclusion of Renaming PCOS–a two-state solution states that “There should be two names for the PCOS phenotypes: those with primarily reproductive consequences should continue to be called PCOS, and those with important metabolic consequences should have a new name.”
Two names being milled upon are “metabolic syndrome” and “metabolic reproductive syndrome”, according to the Renaming PCOS–a two-state solution article, but a new name has not been coined… yet.
Creating another name comes with difficulty as a result of the multiple contributors to having PCOS. To add another layer to the debate is the recent publication of research in August 2015, which has identified an area of genetic markers in the DNA of women of European and Chinese descent, as a possible contributor to the development of PCOS.
Understanding the various presentations of PCOS and how these variations affect treatment options is an important first step. The article The Many Faces of Polycystic Ovarian Syndrome will teach you these presentations, but be sure to ask your healthcare provider to explain to you what type of PCOS it is that you have. This will help whomever you choose to work with to create the best PCOS fertility-health program for your needs.
- Dunaif, A., & Fauser, B. C. (2013). Renaming PCOS—A Two-State Solution. The Journal of Clinical Endocrinology & Metabolism, 98(11), 4325-4328. doi:10.1210/jc.2013-2040. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3816269/
- Northwestern University. (2015, August 19). Data mining DNA for polycystic ovary syndrome genes: Scientists identify PCOS susceptibility that appears to be unique to European women. ScienceDaily. Retrieved from: www.sciencedaily.com/releases/2015/08/150819103654.htm
- PCOS | Polycystic Ovary Syndrome. (2018, August 28). Retrieved from: https://medlineplus.gov/polycysticovarysyndrome.html