Opinion
A doctor said I was ‘too skinny’ to have PCOS. Five years later, I received a diagnosis
Hannah Bambra
ContributorSeven 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.
Polycystic ovary syndrome is believed to be the most common endocrine condition in women of reproductive age, affecting between 6 and 13 per cent.Credit: Getty Images
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.
“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.
The BMI, though it’s still widely used, has long been criticised as an unreliable health measure. It ignores muscle, bone, body composition, and individual factors, often leading to mis-classifying people and, in many cases, reinforces narrow ideas of what a healthy person should look like.
The truth is, I don’t have “skinny PCOS” – I have a condition that is real and complex and deserves to be taken seriously. Polycystic ovary syndrome is believed to be the most common endocrine condition in women of reproductive age, affecting between 6 and 13 per cent of them.
One of the complexities, and common misunderstandings of the condition, is that its name suggests it is strictly ovarian or gynaecological. But as Teede explains, “it’s actually a hormone endocrine condition. Hormones are our chemical messengers, and they have more broad and diverse effects on the body than just with one body part.” Similarly, she says, the cysts “are not true cysts but rather eggs or follicles that have stopped growing”.
A 2023 global survey from Monash University found that a change in the condition’s name could help broaden awareness, understanding and diagnosis. More than 76 per cent of health professionals and 86 per cent of patients with PCOS support this idea.
The World Health Organisation this year formally supported the move and Monash launched a survey inviting new suggestions – among the more than 10,000 responses to date, terms including “endocrine”, “metabolic”, “chronic” and “complex” have gained support.
A name change that better recognises the reality of the condition and helps people understand it is welcome, but delayed diagnosis and misdiagnosis won’t go away unless doctors better educate themselves to fully understand the condition and its varying symptoms.
The shame and stigma related to the commonly misunderstood condition also won’t lessen until we stop thinking women need to be a “perfect” patient or fit a certain body type to receive a diagnosis. For as long as this remains, too many of us will be kept waiting without answers.
Hannah Bambra is a writer, peer support worker and sexual reproductive health advocate.
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