Polycystic Ovary Syndrome Renamed After Extensive Consultation

After over ten years of global discussions, polycystic ovary syndrome (PCOS), which affects about one in eight women, has received a new name.

Now termed polyendocrine metabolic ovarian syndrome (PMOS), this hormonal disorder is estimated to impact around 170 million women worldwide. The change was recently announced at the European Congress of Endocrinology in Prague and was also published in a prominent journal.

The effort to rename was led by Prof. Helena Teede, who heads the Monash Centre for Health Research & Implementation in Melbourne. Experts like Teede have noted that the previous name, particularly the word “polycystic,” often misled patients, causing delays in diagnosis and inadequate care.

The new nomenclature aims to more accurately depict the syndrome’s complexity; it affects not just the reproductive system of individuals assigned female at birth, but also metabolic functions, diabetes risk, and cardiovascular health.

A Broader Understanding of the Condition

Maddy Mavrikis, diagnosed with PCOS at 15, recalls being told by her doctor she might never have children, which she later learned was misleading.

Much of her journey with this condition has involved unlearning what she was first told, including confusion regarding the name. “I never had cysts on my ovaries, so I didn’t quite grasp why I was labeled with ‘polycystic ovaries,'” she shared.

She initially approached her doctor due to irregular periods, and tests revealed elevated androgen levels—hormones typically present in all women but often found in excess in those with PCOS. This explained her experiences with symptoms like acne and excessive hair growth.

Interestingly, hormone imbalances can yield the appearance of “polycystic ovaries” on ultrasounds, which are actually undeveloped eggs. Mavrikis’s ultrasound showed no cysts, yet her GP had insisted she would eventually develop them. Insulin resistance, found in about 85% of PCOS cases, was also present in her diagnosis.

Mavrikis’s mother, who works in pathology, even questioned the label’s relevance. Wasn’t it more about hormones? The new terminology aims to address such misconceptions. Teede clarified that the term “polycystic” might confuse it with genuine ovarian cysts, which can require surgery, noting, “There are no abnormal cysts in PCOS.”

Teede emphasized that the new name shifts focus from cysts to a broader understanding of the condition, which primarily affects endocrine and hormonal functions.

Prioritizing Patient Perspectives

When first named in 1935, doctors primarily viewed the condition as one affecting the ovaries. However, research has since shown it stems from hormonal imbalances involving insulin and androgens, influencing multiple body systems—from metabolism to mental health.

Despite the understanding that PCOS is multifaceted, the name continued to perpetuate the notion that it is chiefly a gynecological issue.

Teede pointed out that this renaming stemmed from patient advocacy. “They wanted it fixed,” she noted, highlighting the suffering linked to the former name and the passion driving the change.

Discussions about renaming have been ongoing since 1995, with significant recommendations arising in 2012. It took considerable time and collaboration to finalize the change, with more than 56 medical and patient organizations involved globally.

Lorna Berry, a long-time advocate for PCOS education, participated as a consumer representative and noted the collaborative nature of the decision-making process.

There were moments of deliberation during which a medical professional, initially supportive of a name with “reproductive” in it, reconsidered after understanding the community’s perspective.

Teede discussed the necessity of involving diverse groups to ensure comprehensive ownership of the name change throughout global regions.

The Monash University Centre for Research Excellence in Women’s Health was first mandated in 2023 to initiate this change and explore the name options, leveraging support from patients and professionals alike.

Teede mentioned the deep concerns about changing a name that had long been neglected, stating that people were eager to get it right.

Following a transition phase, PMOS will be fully integrated into international management guidelines by 2028.

Shifting Perceptions

Mavrikis was among over 300 individuals with PCOS who shared their experiences, many of whom conveyed difficulties in getting a diagnosis and proper treatment for a condition that affects the whole body.

One such individual, Rosemary,* recalled her GP stating that a diagnosis wouldn’t help unless she wanted children—a notion she didn’t at just 17. Additionally, she faced dismissals about her potential to have PCOS based on her appearance.

Eventually diagnosed, Rosemary described the healthcare she received as inconsistent, often focused on reproductive issues rather than her overall health condition. Her attempts to discuss further testing with her healthcare providers met with resistance.

Mavrikis expressed frustration over how often doctors prescribed medications without addressing lifestyle changes like diet and exercise, which are crucial for managing symptoms.

Despite the condition contributing to weight management challenges, she faced stigma related to weight gain. “What they told me was simply not to gain weight,” she reflected.

Feeling overwhelmed, she once stopped visiting her doctor entirely. Now considering starting a family, she recalls how her first appointment had left her with lingering anxiety about fertility since age 15.

The name change gives her hope that awareness and understanding will improve in the medical community, leading to better care and a willingness to explore the broader aspects of the condition.

“Changing the name, for me, shows that they are starting to pay attention to it,” Mavrikis concluded.

*Name changed to protect anonymity