It’s a condition that affects one in eight women around the world. Diagnosed through a matrix of clinical symptoms, ultrasound tests and guesswork, it has no known cure, has been historically underfunded and was, until last week, even wrongly named for close to a century.
When he started his endocrinology practice 42 years ago, Dr Ambrish Mittal, endocrinology head, Max Healthcare, knew PCOS, or polycystic ovary syndrome, was a misnomer. “Ovarian cysts were a small part of the story,” he says. “Some women had no cysts at all, others had excess hair growth, and not everybody was obese,” he says of the condition’s varied symptoms. How is it that a name slapped on in 1935 stuck even though doctors knew it inadequately described a complex endocrine disorder with a wide range of symptoms and health implications including diabetes, cardiovascular disease and mental health?
“Historically, this has been considered an ovary condition with minimal funding for research outside of that, which limited understanding of the broader features,” Helena Teede, an endocrinologist and professor of women’s health at Monash University, Australia said in an email interview.
It took Teede 14 years, the involvement of 56 organisations and over 14,000 patients to change the name to PMOS, or polyendocrine metabolic ovarian syndrome. It was important to engage globally, she said, “as often these decisions are made by developed countries without considering cultural nuances or implications of a change.”
What’s in a name change? Plenty.
The most obvious is the hope for better understanding and diagnosis. In her gynaecology practice, Dr Shaibya Saldanha said she has seen patients who had been wrongly prescribed hormonal medicine for years due to a misdiagnosis. “Many of the symptoms of PCOS can be caused by other factors like stress around exams for instance,” she said. “Removing the word polycystic could help shift the focus towards hormonal and metabolic health.”
The renaming reminds us also that women’s health has a long history of being undermined, even ignored. Endometriosis, for instance, a condition whose symptoms include debilitating pain especially during periods, continues to be under-diagnosed with the pain, very often, being dismissed. It’s a dismissal that is reflected in policy — a refusal to recognise that some women need paid menstrual leave. Women are still expected to tolerate pain as a “natural” process, whether it’s periods or even child birth. The insertion of an intra-uterine device (IUD) for birth control is often carried out without pain management. And those who ask for pain relief run the risk of being shamed.
It’s telling that the ancient Greek word for uterus was hystera and, even today, the surgical removal of the uterus is called a hysterectromy. But hystera is also the root of hysteria, a term used to dismiss physical suffering that can be found in medicine today.
Women’s pain is far more likely than a man’s to be framed in emotional rather than physiological terms. So, a heart attack can be misdiagnosed because doctors are trained to look for symptoms common in men — crushing chest pain — whereas women have symptoms that include jaw pain, fatigue and nausea.
Fortunately, there is growing recognition that the male body is not the medical and research default. There is new attention on conditions like menopause, which affects half the world’s population and has been long under-researched and under-funded.
The shift from PCOS to PMOS is more than a medical correction. It is part of a larger reckoning where women’s health has been seen as somehow less important, less legitimate, and less deserving of attention or funding.
Namita Bhandare writes on gender. The views expressed are personal
