A 17-year-old Marium sits in the gynaecologist’s office, tense, nervous, and anxious as her doctor diagnoses her with Polycystic Ovarian Syndrome (PCOS); the term immediately implies reproductive organ damage. Within hours, a teenage girl who had originally visited the clinic for acne and irregular periods is convinced that motherhood itself might one day be taken away from her.
Soon, every conversation around her revolved around a single concern: whether or not she would be able to marry. Every thought of hers carried the assumption that now there was something fundamentally wrong with her body as a woman. Nobody told her that most of the patients with PCOS do not have ovarian cysts at all; nobody told her that PCOS is as much a metabolic, cardiovascular and mental health problem as it is reproductive. The term had already narrowed the thoughts and conversations surrounding her condition.
For decades, medical terminologies have shaped how illnesses are treated, researched, and perceived. Many diseases were named based on the limited information or research at hand. Now, although scientific and medical knowledge have evolved dramatically, outdated terms have endured, leading to consequences that cannot be ignored.
In 2022, according to the World Health Organization, during the outbreak of the monkeypox virus – now renamed ‘mpox’ – social stigma and fear of discrimination discouraged people from seeking testing or medical care. The term ‘monkeypox,’ coined in 1958 due to the virus being discovered in lab monkeys, was a misnomer. In reality, the disease is carried by small rodents such as squirrels and rats. Yet the outdated naming reinforced racist and stigmatising narratives, especially towards the African and LGBTQ+ communities, creating fear among the public and, hence, complicating outbreak response efforts.
The naming of health disorders not only shapes public perception or narratives but also influences the clinical understanding itself. The latest name change of Polycystic Ovarian Syndrome (PCOS) to Polyendocrine Metabolic Ovarian Syndrome (PMOS) marks a shift in understanding the disorder. The disorder is deeply metabolic; it can affect cardiovascular health, skin, and mental well-being, in addition to reproductive health. Its clinical features include obesity, insulin resistance, type 2 diabetes, cardiovascular problems, irregular menstrual cycles, infertility, ovarian cysts, fatigue, and depression.
The former terminology (PCOS) narrowed both public perception and clinical focus by centring the condition almost entirely around ovaries and fertility. This created problems because the condition can present differently across women, and most individuals diagnosed do not even have ovarian cysts. According to research published in The Lancet, many experts believed that the terminology itself contributed to delayed diagnoses and mismanagement of the illness, compromising effective clinical healthcare.
For Marium, the terminology had already framed the illness before the science could explain it; for her, it had already reinforced cultural stigmas and societal perceptions that transformed thoughts into fears: fear of the possibility of a marriage, fear of never being able to become a mother and fear of society’s perception of her as a woman. However, with the renaming of PCOS to PMOS, healthcare and public health experts believe that it will help diagnosed individuals understand the disease better, beyond fertility alone. There is a belief that the name change would lead to a reduction in cultural stigmatisation and contribute to earlier diagnoses and hence improved treatment.
Perhaps in the future, when another teenage girl sits in a clinic hearing the words PMOS for the first time, she will not be shackled by preconceived notions and fears. Instead, she may leave with something far more important: understanding.