Patient received diagnosis five years after being told she was ‘too skinny’

Seven years ago, after I didn’t have my period for six months, I asked my GP if she thought it could be polycystic ovary syndrome. One of the most common symptoms of PCOS – a condition associated with increased levels of hormones in the body, which can disrupt your cycle – is irregular periods.

Among other classic symptoms, I had acne, thin hair and mood changes, yet my GP said that I “definitely didn’t have it”. People with PCOS all have a high body mass index (BMI), she told me. What I heard was: Your body doesn’t add up.

It took another five years to get diagnosed. By that point, I had seen another doctor, asked for a referral, and took myself to get an internal ultrasound. I cried when the technician rolled the wand around and said, “vaginal walls, normal. Cervix, normal,” then stopped when he got to my ovaries. Hearing they were polycystic was, in some ways, a relief. It was also deeply upsetting.

From there, I quickly found myself referred to a slew of inappropriate weight loss programs. Glossy pamphlets covered with stock images of colourful vegetables arrived at my house and a publicly funded health coach phoned to make sure I didn’t have diabetes and “got out of the house” regularly.

Healthy eating can help control some symptoms of PCOS, yet no one asked me any questions about my diet. At the time, I was underweight. Having a higher BMI is also not a necessary condition to have PCOS.

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“We need to de-associate weight with this condition,” says Helena Teede, an endocrinologist and women’s health professor at Monash University. “As a society, we have blamed and stigmatised higher weight without recognising that it is driven by our environment, our food policies and socioeconomic factors … It is not an individual or personal failure if someone does have higher weight and PCOS.”

As I was in my early 30s when I was finally diagnosed and PCOS can make it difficult to fall pregnant naturally, I decided to freeze my eggs. During the process, I told the IVF clinic’s doctor that it had been hard to get a diagnosis because of my BMI. She laughed and said, “Oh, yes, you are what we call skinny PCOS!”

For me, intervals of being underweight have generally been linked to depression and difficulty bringing myself to eat large quantities. Her comment made me feel awkward and uncomfortable, as if my body was on parade again.