I was diagnosed with grade four endometriosis at 28 and had a hysterectomy at 39. Though the years passed quickly in a haze of IVF, surgeries and hospitalisations, I remember the nights I spent in pain, scouring the internet for new information, hungry for a shared experience. Looking back, I’m convinced that if I’d had a support group, I may have found more accurate information or the right surgeon, which could’ve led to a different outcome. Or, at the very least, I would’ve known that I wasn’t imagining the pain.

“The mistake doctors made and continue to make is imagining that a disease that’s in the patient’s head must therefore, in some sense, be a fabrication over which the patient has control,” writes Elizabeth Comen in her book All in Her Head: The Truth and Lies Early Medicine Taught Us About Women’s Bodies and Why It Matters Today. Because of this, it’s common for women to be diagnosed years later than men for the same disease.

Women’s health is a funny business. As science advances towards the space age, the prioritisation of women’s health still leaves much to be desired. A study by McKinsey in 2020 found that only one per cent of all healthcare was invested in female-specific conditions. For years, conversations around menstruation and menopause were considered taboo. But as we begin to speak up and destigmatise topics of miscarriages, IVF procedures and female-specific diseases, we nd that the best way to get information is via other women.

Rachel Kurien, a trained reflexologist in Mumbai, found that a fair number of her clients were struggling in the same way she was during menopause. “I helped them with my own research and thought, why not make a group and pool our resources instead of living in silos,” she says. Her WhatsApp community, Menopausal Mumbai, has 300-plus members and pings regularly with suggestions and updates, whether it’s about the best doctor for HRT or which medicinal mushrooms can help with hot flashes. “There are some women who post on the group in tears because doctors brush their symptoms aside and say that this has nothing to do with menopause.” In her own experience, Kurien was suffering from continual tearing of the skin in her labial area but wasn’t getting diagnosed. “Having read up, I came across the term GSM (genitourinary syndrome of menopause) and realised that’s what I had, and I have since helped others recognise this too.”