NEW DELHI: A hormonal disorder, Polycystic Ovary Syndrome (PCOS), which affects one in eight women, or 170 million women globally, now has a new name, according to global organisations of scientists and physicians devoted to hormone-related conditions.
The new name, which was coined through an unprecedented, rigorous global consensus engaging patients, multidisciplinary health professionals, and organisations across the globe, is Polyendocrine Metabolic Ovarian Syndrome (PMOS).
Scientists said it was aimed to “omit the misleading reference to ovarian cysts and accurately reflect the diverse features of the condition.”
Published in the Lancet, the global experts said, “for too long, the name has reduced a complex, long-term hormonal or endocrine disorder to a misunderstanding about ‘cysts’ and a focus on ovaries. This contributed to missed diagnoses and inadequate treatment.”
According to the WHO, women with PCOS may experience irregular or infrequent menstrual periods, pain, including pain with heavy menstrual bleeding, abnormal ovulation, changes in hair (either excessive facial or body hair or female-pattern baldness), oilier skin, acne and/or cysts in the ovaries.
It is also one of the most common causes of infertility. It is also linked to diabetes, obesity, cardiovascular disease, mental health challenges like depression and anxiety, hypertension and endometrial cancer.
As per prevalence studies, one in five young Indian women suffers from this condition.
Speaking with TNIE, Dr Raina Chawla, Associate Director - Gynaecology, Sarvodaya Hospital, Faridabad, said, "It is an important move toward correcting one of medicine’s most persistent misnomers."
“For years, the name of the disease suggested that PCOS is solely an ovarian disorder, resulting in considerable diagnostic difficulties,” she said.
“As healthcare professionals, we know that the 'cysts' mentioned are in fact small follicles and not the cause but a result of the condition. With the use of the correct name for the syndrome, PMOS, we can now correctly focus on the metabolic aspect of the disease, namely insulin resistance and androgen excess. It transforms the patient’s journey from managing a localised symptom to treating a systemic endocrine disorder with long-term health implications,” she added.
Dr Meenakshi Balasubramaniam, Consultant, Obstetrics and Gynaecology, Motherhood Hospital, Chennai, said polycystic ovarian syndrome is a highly prevalent endocrinological disorder, especially in India.
“The current name change from PCOS to that of PMOS will help people understand that this is a metabolic and endocrinological disorder and not just some cyst in the ovaries. The moment we say cyst in the ovaries, the patients are worried that they are suffering from a huge ovarian cyst and some fertility issue, which carries huge fear and stigma,” she said.
She added that now PMOS will make them understand that it is more of a metabolic disorder and not just an ovarian cyst.
“So even when doctors counsel the patients on weight loss and lifestyle management, the first question that patients always ask us is, ' Has the cyst disappeared? They don't concentrate on the lifestyle changes that they are supposed to follow,” she added.
The Lancet paper said the 'reproductive' focus of the name can reinforce stigma, particularly in sociocultural contexts where fertility carries high value.
The global authors said the “current name is inaccurate and misleading. Obscuring the conditions’ multisystem endocrine and metabolic features, reinforcing stigma, delaying diagnosis, and hindering effective clinical care, research and policy alignment.”
Professor Helena Teede, Director of Monash University’s Monash Centre for Health Research and Implementation and an endocrinologist at Monash Health, Melbourne, Australia, led the name change process after spending decades researching the condition and seeing the patient impacts firsthand.
“What we now know is that there is actually no increase in abnormal cysts on the ovary, and the diverse features of the condition were often unappreciated,” said Teede, who is an Endocrine Society member.
The Endocrine Society is a global community of over 18,000 endocrine investigators and clinicians in more than 100 countries.
“It was heartbreaking to see the delayed diagnosis, limited awareness and inadequate care afforded to those affected by this neglected condition. While international guidelines have advanced awareness and care, a name change was the next critical step towards recognition and improvement in the long-term impacts of this condition,” Teede said.
The name change took 14 years of global collaboration between experts and those with lived experience.
Teede said it was the largest initiative to rename a medical condition.
“The agreed principles of the new name included patient benefit, scientific accuracy, ease of communication, avoidance of stigma, cultural appropriateness and accompanying implementation,” she said.
“This change was driven with and for those affected by the condition, and we are proud to have arrived at a new name that finally accurately reflects the complexity of the condition. Make no mistake, this is a landmark moment that will lead to desperately needed worldwide advancements in clinical practice and research,” she added.
The patient-focused effort resulted in more than 22,000 survey responses and involved multiple international workshops with patients and multidisciplinary health professionals.