Significant Name Change for PCOS
Initially, it was named after two doctors. Then, it adopted a misleading title. After over a hundred years, a prevalent hormone disorder has finally received a more accurate name.
Polycystic ovary syndrome (PCOS) is now being referred to as polyendocrine metabolic ovarian syndrome (PMOS), as announced by an international science consortium.
This change was revealed at the European Congress of Endocrinology in Prague, following 14 years of collaboration among health professionals, patients, and advocates.
The team leading this initiative, which includes Verity, a UK charity, and Monash University in Australia, noted that “the term polycystic ovary syndrome (PCOS) has long been considered inaccurate and potentially harmful.” They highlighted that the original name only focused on one organ and missed the syndrome’s broader implications.
Lorna Berry, a patient involved in the discussion, expressed hopes that this change would improve outcomes for women throughout their lives. For years, women with this condition have struggled to get diagnosed and have faced a plethora of misinformation.
A common myth is that PMOS is purely a reproductive issue. While it can lead to infertility for some, its implications stretch far beyond just the ovaries; some research suggests it might even begin in the brain.
PMOS can trigger irregular menstrual cycles, abnormal ovulation, excessive hair growth, acne, and occasionally infertility. However, it also carries significant metabolic, endocrine, psychological, and skin-related symptoms that may persist well beyond childbearing years.
Currently, PMOS affects about 170 million globally, with around 70 percent of those cases going undiagnosed. The name change might be contributing to this issue.
One of the most notable changes is the removal of the “C” for “cystic.” For the next three years, both terms will be used interchangeably.
The term “cysts” gained notoriety when two surgeons, Irving Stein and Michael Leventhal, noted enlarged ovaries with small, cyst-like structures during surgeries in 1935. They observed that women experienced resumed menstrual cycles after these ‘cysts’ were removed, which contributed to the early understanding of the syndrome.
Scientific understanding of the female reproductive system was still evolving at the time. By 1958, Stein referred to the condition as Stein-Leventhal Syndrome and claimed that surgical intervention could provide a cure. Subsequently, PCOS became the common term.
However, these ‘cysts’ turned out to be underdeveloped ovarian follicles. Many patients today may not even show these immature eggs during ultrasounds.
Terhi Piltonen, a Finnish obstetrician involved in the name change, mentioned that the term PCOS can be misleading. Many believe that the ovaries contain large cysts that may need surgery, but in reality, they often just have numerous small follicles that are not necessarily unhealthy.
This narrow focus has caused many to overlook related symptoms like weight struggles, metabolic issues, and mental health challenges.
At this moment, there is no known cause or definitive cure for the syndrome. Treatments vary widely, with hormonal, metabolic, and surgical options available to enhance quality of life. Yet, many patients still experience delays in diagnosis and care.
The inclusion of “metabolic” in the new name could create awareness about these crucial aspects of PMOS. It is estimated that 85 percent of patients deal with insulin resistance and face increased risks for conditions like type 2 diabetes and obesity. Despite this, they often aren’t adequately screened for these issues.
A recent editorial pointed out that the term PCOS is misleading and creates a negative perception for patients. Between the late 1930s and the 1970s, research primarily concentrated on hormonal factors, but recent decades have shifted toward metabolic considerations.
Research into medications like metformin, initially studied in 2000, has shown promise in managing PMOS symptoms by reducing insulin and testosterone levels. Although research has grown substantially, treatments remain mostly available off-label, leading to high out-of-pocket costs for many patients.
Perhaps incorporating ‘metabolic’ into PMOS will guide better care practices and research in the future.
In the next three years, efforts will be made to educate the public about PMOS and encourage global health organizations to phase out the PCOS terminology.
The ultimate aim is for the World Health Organization to adopt PMOS in its International Classification of Diseases, which is used in 195 nations.
The rationale behind this name change and the proposed strategy is detailed in a health policy paper published in The Lancet.
