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PMOS, previously referred to as PCOS, impacts millions of women globally.(Image credit: The Good Brigade via Getty Images)Share this article 0Join the conversationFollow usAdd us as a preferred source on GoogleSubscribe to our newsletter
A hormonal condition affecting 1 in 8 women has undergone a nomenclature change.
Polycystic ovary syndrome (PCOS) is now designated as polyendocrine metabolic ovarian syndrome (PMOS). Medical professionals indicate that the updated designation more accurately represents the condition’s character.
The decision to alter the name was the result of a thorough deliberation. This process involved gathering input from thousands of individuals diagnosed with the syndrome worldwide, as well as numerous healthcare providers. The financial backing and oversight for this endeavor were provided by 56 academic, clinical, and patient advocacy organizations. A strategy is in place to promote awareness of the new nomenclature and integrate it into practice over the ensuing three years.
“It was a truly comprehensive undertaking, with community participation at every juncture,” Dr. Teede informed Live Science. “Our aspiration is that individuals will comprehend and honor the process — recognizing that it was not decided in seclusion by a select few expert panels, which is the typical practice.”
What’s in a name?
The concept of selecting a new appellation for PCOS is not novel, with some advocacy efforts dating back to the 1990s and early 2000s. In 2012, the U.S. National Institutes of Health suggested a name revision following expert conclusions that the designation PCOS was a misleading “diversion” for both patients and medical practitioners.
“The nomenclature emphasizes a criterion — polycystic ovarian morphology — which is neither essential nor sufficient for diagnosing the syndrome,” the NIH experts articulated in their report.
The former designation suggested that individuals with PMOS possess numerous abnormal cysts on their ovaries, Dr. Teede elaborated. When the ailment was initially described in the 1930s, physicians physically examined patients’ ovaries during surgical procedures and observed that “they appeared irregular and bumpy, as if they had cysts,” she remarked. “However, a genuine abnormal cyst has a specific type of lining and functions in a particular manner.”
Referred to as “pathological noncancerous ovarian cysts,” these types of cysts have the potential to enlarge, rupture, hemorrhage, and induce pain, and may necessitate surgical intervention. Dr. Teede and her fellow researchers have discovered that individuals with PMOS are not more prone to developing these pathological cysts compared to those without the condition. Instead, they frequently exhibit a significant number of “arrested follicles,” meaning ovules that have failed to reach full maturation within the ovaries due to the syndrome’s hormonal influences.
In essence, the term “polycystic” is inaccurate, as arrested follicles are not cysts. Furthermore, the emphasis on ovaries overlooks the disruptions in multiple hormonal systems that precipitate subsequent issues related to metabolism, weight, reproduction, skin, and mental well-being.
We needed to shift from the inaccurate to the accurate.
Dr. Helena Teede, an endocrinologist and professor of women’s health at Monash University
It is estimated that as many as 70% of individuals with PMOS remain undiagnosed, and a portion of this diagnostic discrepancy may be attributed to misunderstandings about the condition’s actual nature. Over the years, numerous surveys have indicated that both physicians and patients find the name PCOS confusing and frequently assume that abnormal ovarian cysts are a defining characteristic of the ailment. In a recent survey, nearly 86% of participating patients and 76% of responding health professionals agreed on the necessity of a name change.
Given that the syndrome has predominantly been perceived as gynecological, research, funding, and medical education have often concentrated on the reproductive facets of PMOS. This has resulted in knowledge gaps among practitioners in other specialties, despite the condition’s widespread impact on numerous bodily systems. The new designation is also anticipated by stakeholders to potentially alter this trend.
“We needed to transition from the imprecise to the precise,” Dr. Teede commented regarding the new designation.
A new name, at last
Following the NIH’s 2012 recommendation, a series of renaming efforts were initiated, but none managed to gain significant momentum. Experts acknowledged that a successful rebranding would necessitate international leadership, a democratic approach to achieve consensus, the inclusion of patient advocacy groups, and a clear strategy for disseminating the new terminology.
In addition to querying whether the syndrome warranted renaming, the leaders of this initiative also investigated whether the acronym should be retained as “PCOS” for ease of adoption, or if prioritizing an accurate reflection of the disease’s characteristics was more crucial. The latter proved to be of greater importance to respondents, the organizers reported on Tuesday (May 12) in The Lancet. The updated designation will also be officially announced on Tuesday at the European Society of Endocrinology Conference in Prague.
“We received a very strong endorsement for the initial two terms, namely ‘polyendocrine’ and ‘metabolic,'” Dr. Teede stated. The consideration of the word “ovarian” presented more complexity, she noted, but it was ultimately selected as alternative terms, such as “reproductive,” were perceived as more stigmatizing.
“In numerous cultures, a woman’s value or worth is intrinsically linked to her fertility,” Dr. Teede observed. “Consequently, suggesting that women have a condition that might affect this aspect can be profoundly detrimental.”
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She further mentioned that when diagnosed and managed effectively, individuals with PMOS can often conceive and achieve their desired family sizes; it is primarily when they remain undiagnosed and untreated that fertility challenges may arise, she stated.
Some specialists have proposed that, concurrent with this name alteration, an opportunity may exist to investigate a potential “male equivalent” of PMOS. Certain males exhibit diminished levels of androgens, leading to sparse hair growth and premature balding, alongside some issues mirroring those observed in PMOS, such as insulin resistance, obesity, and mental health concerns.
However, Dr. Teede personally does not believe there is sufficient evidence to classify this phenomenon in males as a variant of PMOS, despite its shared hormonal and metabolic characteristics. She considers it “far too premature, based on the scientific data,” adding, “It is a distinct condition in that it does not carry the same reproductive implications as it does in females.”
As a subsequent step, Dr. Teede and her associates will focus on refining some of the terminology used in the diagnosis of PMOS. When assessing ovaries via ultrasound, clinicians observe what they term “polycystic ovarian morphology,” but in reality, they are identifying indicators of arrested follicles. Therefore, to align with the syndrome’s new designation, this terminology will also require modification.
For those seeking reliable information regarding PMOS, Dr. Teede suggested the application AskPCOS, which will shortly be rebranded as AskPMOS.