A New Name For PCOS?

The NIH Office of Disease Prevention held a historic Evidence-based Methodology Workshop on PCOS that took place December 4-5, 2012. Top researchers in PCOS from all over the world met for this 2-day workshop to present and discuss evidence-based information on PCOS. Among the important topics discussed at the workshop was how underdiagnosed PCOS is among health care providers and the benefits of changing the name of PCOS to one that more appropriately reflects the condition.

Why A New Name For PCOS?

The biggest reason for renaming the condition is because the name PCOS is misleading. According to the authors of the workshop summary, “the name ‘PCOS’ "is a distraction and an impediment to progress." During the workshop, the point was raised that many health care providers think of PCOS solely as a reproductive disorder that's specific to the ovaries. The panel clearly expressed that PCOS is more about the ovaries, and it's time to assign a name that reflects the complex metabolic, hypothalamic, pituitary, ovarian, and adrenal interactions.

Advantages of a New Name

Having a new, appropriate name will hopefully increase awareness of the disease by the media and health care providers, and thus, help more women get diagnosed. More awareness could also lead to more funding opportunities for research, treatment and third-party reimbursement.

In an interview with Endocrine Today, Dr. Anuja Dokras, MD, PhD, Director at the PENN PCOS Center at University of Pennsylvania and President of the Androgen Excess and PCOS Society, states that “women with PCOS do not, in fact, have ovarian cysts but rather follicles with an egg in it.” According to Dokras, the name PCOS “has distracted from other issues associated with the condition, including hypertension, diabetes, weight concerns, and high cholesterol.” A new name would create more awareness for these conditions which are often overlooked in women

Here Are Some of the Potential New Names:

  • Female Hormonal Imbalance (FHI)                           
  • Hormonal Imbalance Syndrome (HImS)
  • Imbalanced Hormone Syndrome (IHS)                     
  • Metabolic-Reproductive Syndrome (MRS)               
  • Prevalent cardiometabolic ovary syndrome (PCOS) 
  • Functional Female Hyperandrogenism (FFH)           
  • Polyfollicular Ovarian Syndrome (PFOS)

Disadvantages of a New Name       

While a new name does have its advantages, not everyone is in support of it. Some people feel that changing the name will confuse people even more about PCOS, while others feel more time and effort should be made to raise awareness about PCOS as it is currently called. This would be, after all, the second time this condition has been renamed (PCOS was originally called Stein–Leventhal Syndrome in 1935, named after the researchers who discovered it).

Sasha Ottey, Executive Director of PCOS Challenge, Inc. encourages caution before progressing with a name change for PCOS and stresses the need for “a funded and thorough impact assessment involving all stakeholders, including the healthcare community, patients, researchers and support and advocacy groups.” Ottey also points out the importance of understanding the impact on the organizations serving the PCOS community, most of which are already underfunded and understaffed. “If there is a name change, it needs to be tied to a substantially funded educational campaign to raise awareness about the disorder. It is essential to have a global concerted and sustained effort where all stakeholders commit to prioritizing awareness, education, research and support for the condition” says Ottey.


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

VIDEO: Name change sought for PCOS. Endocrine Today website. Accessed May 27, 2015. http://www.healio.com/endocrinology/reproduction-androgen-disorders/news/online/%7Bc9fc08f9-2a23-407c-8223-6e2c97a063f1%7D/video-name-change-sought-for-pcos