‘I still want to scream’: the loneliness and confusion of living with PMOS

As polycystic ovary syndrome, or PCOS, is renamed polyendocrine metabolic ovarian syndrome in an attempt to improve treatment and remove stigma, readers speak about the condition and their struggles to get help

• ‘Unprecedented’ global effort gives new name to polycystic ovary syndrome – and new hope to millions of women • What is PCOS, what are the symptoms and treatment, and why is it being renamed PMOS?

The name polycystic ovary syndrome (PCOS) needed to change. It was inaccurate and it was worsening outcomes for people with the condition.

It fuelled misconceptions that it is primarily a gynaecological condition, without enough focus on the whole-body effects across cardio-metabolic, mental, skin and reproductive health.

I was diagnosed at 14. They could tell just by looking at me: the makeup of my body, the extra hair, especially on my face (this has been the bane of my life) and the weird periods. They gave me [hormonal medication] Dianette, which I stopped taking after a while due to feeling awful, and told me I’d have unpredictable periods, and that I might struggle with fertility one day.

This felt scary but far away at the time, but in hindsight it was hideously simplistic and gave me no knowledge on insulin resistance, the hormonal implications, the impact of stress or the dangers down the road.