Tale Of Mis(Sed)-Diagnosis: From PCOS To PMOS
- PCOS ignores diverse endocrine and metabolic features that impact ovarian function.
- PMOS has life-long implications beyond conceiving and pregnancy.
- 56 leading organisations came together to demand renaming.
“I was diagnosed with ovarian cysts and told that I have PCOS. When I worked hard on my health, the cysts went away but so did my periods”, shared Anjana, a twenty-year-old resident of Delhi.
The Endocrine Society announced that henceforth, Polycystic Ovarian Syndrome will be called Polyendocrine Metabolic Ovarian Syndrome (PMOS) . This step has been taken not suddenly but as a result of an ongoing consensus over the years that PCOS relied only on ovarian cysts ignoring diverse endocrine and metabolic features that impacted ovarian function. With this, better diagnosis is expected of a disease that impacts nearly 170 million menstruators during their reproductive years alone.
Doctors say that PCOS restricted the syndrome to reproductive abnormalities and gave it an ovarian reproductive emphasis when it can have life-long implications beyond conceiving and pregnancy. Misdiagnosis and over diagnosis, as in the case of Anjana, apart from self-diagnosis is also common. Arrested follicle development, that happens in early years of menstrual health, are normal. Poly-endocrine factors in children should be comprehensively evaluated with hormone tests to rule out diabetes and pre-diabetes, and insulin resistance and dyslipidemia.
For Anjana, years of confusion that led her gynaecologist to say that she had cured PCOS, while calling it a lifestyle disease, has been resolved following the renaming. The PMOS care will hopefully take into consideration lifestyle changes according to case to case basis.
Falsehood of PCOS
Fifty six leading academic, clinical, and patient organisations came together with an assessment of 14,360 people with PCOS and multidisciplinary health professionals from all world regions to identify principles prioritising scientific accuracy, clarity, stigma avoidance, cultural appropriateness, and implementation feasibility in a study by Lancet. PCOS was coined in 1935 and diagnosed if the patient met the following International Medical Standards-
(1) oligo-anovulation,
(2) clinical or biochemical hyperandrogenism, and
(3) polycystic ovaries on ultrasound or elevated anti-Müllerian hormone (AMH).
Adolescents aged 10-19 had to meet the first two criterias. PCOS, according to the Lancet study, had long been primarily perceived as a gynaecological or ovarian disorder. However, research, evidence synthesis, and International Guidelines have shown that it is underpinned by endocrine disturbances in insulin, androgens, and neuroendocrine and ovarian hormones.
Signs of PCOS involve metabolic changes reflected by obesity, dysglycaemia, type 2 diabetes, hypertension, dyslipidaemia, metabolic dysfunction-associated steatotic liver disease, cardiovascular disease, and sleep apnoea; reproductive dysfunction as in ovulatory disturbances, irregular menstrual cycles, infertility, pregnancy complications, and even endometrial cancer; psychological effects leading to depression, anxiety, poor quality of life, and eating disorders and dermatological conditions like acne, alopecia, and hirsutism. PCOS cases became serious as the Basic Metabolic Index (BMI) of individuals diagnosed with it was higher and contributed to its severity. Borderline, PCOS had multifaceted health impacts and a much less talked about economic burden.
Vandana shares, “I got my last period six months ago. I repeatedly spent money and time on abdominal scans on the request of my gynaecologist and she could not figure out why my cycle was missing even though there weren’t any cysts”. She read about the experiences of people online and found solace in shared stories. “Maybe I have PMOS, I do not wish to self-diagnose but I will be looking for a gynaecologist who can rightfully treat this.”
Because of its limited scope, PCOS led to delayed diagnosis and 70% of people, reportedly, were left undiagnosed leading to dissatisfaction. As far back as 2012, the US National Institutes of Health Office of Disease Prevention Evidence-based Methodology Workshop on PCOS highlighted the challenges and inaccuracy of the current name, and recommended a change to reflect the conditions better. In the study by Lancet, 84% of respondents endorsed a global consensus process to identify and implement a new name, alongside education and implementation strategies.
Finally, Verity, a UK-based charity and advocacy organisation, Monash University’s Centre for Research Excellence in Women’s Health in Reproductive Life and the Androgen Excess and PCOS Society launched a global initiative with a clear mandate for a name change. The Australian National Health and Medical Research Council awarded funding, leadership was given by the Androgen Excess and PCOS Society and Verity in 2023.
More than just a rechristening
An eight-stage plan is proposed by the study starting with publication of Health Policy, supported by accompanying commentaries, clinical reviews, editorial correspondence, and updates to textbooks and educational materials. The next stage focuses on resource development in multiple languages and for diverse platforms and delivery modes. Global Communication and engagement, integration of the new nomenclature in health systems, policy and research alignment, international classification and engagement with organisations including the World Health Organisation, a managed transition period of 3 years with monitoring and evaluation, and integration into the International Guideline, which is already used in 195 countries, are the other stages. These international guidelines will be next updated in 2028. Dr Rucha Chadha, a gynaecologist, speaks from experience to say, “Improved awareness over the years led many patients without cysts to question whether they had PCOS and added to confusion associated with the name”. She added, “Many patients had fluctuations in weight, missing periods for months and growth of facial hair but no cysts were shown in the lower abdominal scans”.
Insulin resistance affects a majority of people with PMOS and contributes to androgen excess. This together with low-grade inflammation and dysfunctions in adipokine signalling and the sympathetic nervous system, drives metabolic dysfunction. Obesity, particularly central adiposity, is increased in people with PMOS. This exacerbates symptom severity and cardiometabolic complications, such as impaired glucose tolerance, gestational diabetes, metabolic dysfunction-associated steatotic liver disease, type 2 diabetes, dyslipidaemia, hypertension, and vascular dysfunction. Patients are at risk of cardiovascular disease and beyond this, neuroendocrine abnormalities disrupt ovarian steroidogenesis and impair follicular maturation. Beyond reproductive life stages, ovarian dysfunction and disturbances in endocrine and paracrine function continue to plague people with PMOS.
Professor Helena Teede, who is the Director of Monash Centre for Health Research & Implementation and an endocrinologist, says, “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”. She led the name change process after decades of research into the condition and seeing patient impacts first hand.
From PCOS to PMOS, a 14-year-long battle has been won resulting in the largest initiative to change the name of a medical condition. Dr Seema Sharma, a gynaecologist and advisor at Pratisandhi, posted on the social media platform Instagram to say, “The new name is scientifically correct and it also considers diverse cultural contexts.” She adds, “This will avoid certain reproductive terms that could heighten stigma and be harmful for women”.
This is more than renaming. First, it is a recognition that the condition is underpinned by multiple interacting hormonal disturbances, including insulin, androgens, and neuroendocrine hormones, rather than being an isolated ovarian disorder. Second, it is an acknowledgement of the inherent metabolic features such as insulin resistance, obesity, and increased risks for type 2 diabetes and cardiovascular diseases. Finally, it retains the connection to ovarian dysfunction, including ovulatory disturbances and infertility, which remain defining features of the syndrome. This is a moment to embrace the medical pivot and possibilities of deeper research into the field, avoid misdiagnosis or lack of it and focus on treatment and care of patients with such chronic conditions.
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