It’s high time we spoke openly about PCOS

With the hormonal disorder becoming increasingly common in urban India, a large number of women still remain unaware that they can seek help

On an average, it can take anywhere between 1-3 years to diagnose Polycystic Ovarian Syndrome (PCOS). For Nidhi Singh, it took around 6-7 years. It was more than a decade ago when the conversation around PCOS was at best stilted, at worst silenced. In 2019, it led Singh to create the PCOS Club, a first-of-its-kind online community that informs, educates and now guides those who are seeking a diagnosis around PCOS, or just want to know more. “My argument was that if diabetes can be a conversation at the dinner table, you can talk about PCOS too,” says Singh.

The PCOS landscape

PCOS is a hormonal disorder that results in enlarged ovaries and the formation of small cysts on the outside edge of the ovary. “What should happen is a good balance between the pituitary and ovarian hormones, progesterone, and so on,” explains eminent gynaecologist Dr Kiran Coelho. “In PCOS, this balance between the pituitary and ovarian hormones goes out of tune. Follicles start producing male hormones in the form of testosterone, androstenedione and dehydroepiandrosterone (DHES). These are what lead to the androgenic effects of hirsutism, acne as well as insulin resistance,” she says.

“Amongst Indians, we are seeing more insulin resistance, tending to go towards diabetes. There is quite a bit of obesity, and we also have more hirsutism in our population, compared to other Asian populations,” adds Dr Duru Shah, one of India’s leading gynaecologists and the founder of the PCOS Society of India that was set up seven years ago. One of every three adolescents has PCOS, according to Coelho.

In pure approximation, one of every five women are diagnosed with PCOS in India. It’s an extremely conservative figure because most women are unaware of symptoms, and unaware that they can seek help. A large section of the medical fraternity, too, needs to be educated and updated on PCOS symptoms, and most importantly, its management.

But if it’s taking an average of three years to just diagnose the syndrome, what are the chances of making sure we don’t become the PCOS capital of the world? As far as reproductive health is concerned, women in India have been taught to ‘grin and bear it’ since birth. With PCOS, the problem has another set of problems. Thanks to its very physical manifestations of hirsutism and obesity, women are shamed, keeping them away from seeking medical help. Most women are, in fact, made aware of PCOS when they visit the dermatologist or undergo laser therapy for hair reduction.

What’s been done to make a change?

For example, it’s important to note that PCOS is no longer referred to as a disease. It’s PCOS—polycystic ovarian syndrome. “We have removed the word ‘disease,’ because it is not a disease,” says Shah. “Many radiologists who might not be educated might still write ‘PCOD’ on reports. But we are trying to educate them otherwise.”

It is also online communities like Singh’s PCOS Club that have been instrumental in spreading awareness. “We know that the doctor-patient ratio is really less,” says Singh. “Even though they want to share information, they’re bound by time and in the process of explaining things, a lot is lost in translation. So there was no patient advocate, specifically for an Asian audience. We need more awareness and intervention at an early stage.” Singh talks about queries she receives even today from young women who have been diagnosed and prescribed drugs, but have no idea what the drugs are and what their long-term effects might be. “A young girl, around 21, approached us saying she was losing her periods since she was 15. Until our conversation, she didn’t know that the medication she was prescribed was hormonal. She wasn’t aware of its side effects, and was seeking help for gut issues and mental health, trying to find the right doctors.”

Thanks to Instagram and Facebook, access to PCOS education has improved massively over the last few years. Coelho has been running a PCOS clinic for decades. Shah, as the head of the PCOS Society in India, has been running webinars for years, involving both patients and the medical community, updating them on new methods of treatment and management. Brands like Cosmix–who make plant-based supplements–have also taken an educational approach, using adaptogens to create What Women Want, a powder-based drink to help balance hormones. “I do mention that there is no need to take it if you’re not experiencing a hormonal imbalance,” explains founder and creator Vibha Harish.

Making a change (but carefully)

As with all online activity, there is the risk of inaccurate and dangerous spread of information via self-styled health gurus. A lot of them claim to ‘cure’ PCOS (it isn’t medically possible), which leads to women who follow their grievous advice to ignore their actual issues, creating further complications. Sale of over-the-counter nutritional supplements is also common, something that is easily available on the PCOS Club website.

But Singh explains that these nutritional supplements are available on platforms like Amazon, and the difference is that every sale on the PCOS Club website is supplemented by a phone call from her team to the customer to explain, educate and understand the customer to help make them an informed decision. This approach has earned them a host of expected patrons too. “We’ve lately had a few men approach us on behalf of their female partners,” says Singh. “Some aren’t ready to do it themselves, and the men want to help. I’ve even had a few fathers ask us how to help their daughters.”

It's an encouraging scene, especially when organisations like PCOS Club and the PCOS Society of India are planning to work together to ensure a wider outreach. While the crescendo of the PCOS conversation reaches fever pitch around 1 September–World PCOS Day–it’s incredible that it doesn’t wane much through the year. Reels detailing PCOS-related yoga asanas, which chocolate cake to indulge in, and which non-judgemental gynaecologist to go to in each city are racking up views and comments. Hopefully this will translate to better management, less shaming, and more prevention of PCOS.

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