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Every day, Hannah Achelles struggles with her body image.
The 34-year-old from Gadigal Country/Sydney was diagnosed with polycystic ovary syndrome (PCOS) in her late teens.
“The big thing about PCOS is I kind of feel like I’m this ugly monster because it is so physical.”
During high school, Hannah would compare the thick, dark hair on her body to her friends’ “nice blonde, downy kind of fluff”.
She was also gaining more weight than her peers.
“It just made me self-conscious, and I had a bit of loathing for my body.”
As Hannah reached adulthood, being told repeatedly by doctors she needed to lose weight to treat the disease only fuelled those feelings.
PCOS affects one in eight women or those assigned female at birth and can have mild to severe impacts on physical health, as well as emotional wellbeing, including body image.
ABC podcast Ladies, We Need to Talk spoke to women living with PCOS and Helena Teede, a female endocrine specialist from Monash University, to find out how the hormonal disorder impacts women’s self-esteem.
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What is PCOS?
PCOS is a hormonal or endocrine condition “with diverse impacts across many different systems for many women over their lifetime,” says Professor Teede.
She is a world leader in PCOS research and was part of the team that came up with the international guidelines for the condition.
“It affects our reproductive health, our metabolic health, our psychological health, and our dermatological health,” she says.
We don’t know the exact cause of PCOS, but genetics and family history play a role.
PCOS symptoms vary from person to person but can include irregular or non-existent periods, severe cystic acne, facial hair, excess body hair, hair loss, weight gain, stress, depression, and anxiety.
Professor Teede says two main hormones cause such havoc: androgens and insulin.
In women with PCOS, there are higher levels of both.
“Together, they are not a good combination for women’s health,” Professor Teede says.
About 85 per cent of women with PCOS have insulin resistance.
Professor Teede says the name can be confusing because PCOS is not just an ovary disease and doesn’t have “true cysts”.
According to the World Health Organization (WHO), PCOS is one of the leading causes of infertility.
“The biggest problem [with PCOS] is that the eggs that we all carry from birth, and then start to develop after puberty, just can’t develop properly because they don’t like the hormones that they are sitting in,” Professor Teede says.
‘Body image is profoundly affected’
In addition to the health burden PCOS places on Hannah, such as not having regular periods, she says PCOS symptoms make her feel unattractive.
“It’s the hair, it’s the weight, it’s the acne … it’s all of those things that combine to make you feel like you’re not really attractive in the way you’re supposed to be.”
Many women with the condition can feel this way, explains Professor Teede.
“Body image and self-esteem are quite profoundly affected.”
Hannah says the disease’s impact on image and fertility has shaped her view on dating.
“For a long time, I didn’t find myself attractive … or think that anyone would be interested in me.
“I used to think, ‘Well, what if I meet somebody and they want to have kids … what if I can’t offer that?'”
She says doctors would often tell her to “lose weight” rather than addressing the underlying problem.
“The only time I’ve ever been able to lose weight … is when I basically stopped eating.
“It developed into some kind of eating disorder.”
Professor Teede says eating disorders and disordered eating rates were higher in patients with PCOS.
For Romy Brown in Ngambri/Canberra, her weight was often the focus of her PCOS.
“I didn’t know why I was gaining so much [weight] as I hadn’t changed the way that I’d eaten or exercised,” the 31-year-old says.
Romy’s weight came into sharp focus when she sought help for infertility.
“The first gynaecologist that we talked to said that she wouldn’t even bother looking at me until I’d lost 30 kilograms.”
After four years, ovulation drugs, two gynaecologists and endless heartache, Romy decided to have gastric sleeve surgery, and by the end of that same year was pregnant with her son.
Romy has lost 50 kilograms since the surgery.
“The weight loss triggered my cycles to come back [but] it’s not a solve-all, my PCOS is still there.”
Professor Teede says bariatric surgery can have positive health effects for some women with PCOS, including improved fertility.
But it’s not a suitable option for everyone and should be discussed with medical experts.
‘If I was skinny, I’d feel listened to’
Hannah says under her doctor’s advice, she’s considering taking the weight loss drug Ozempic.
“Because maybe then if I lose the 20 kilograms and I’m hitting those milestones that the doctors want me to hit, then they’ll actually start investigating why I’m not getting my period.”
She says there is a lot of misunderstanding about women who live in bigger bodies — for example, that it’s her “fault”.
“There are things that are fighting against me to be smaller.”
Hannah says along with mood swings and fertility concerns, body image is something she struggles with every day.
“It’s dealing with the way that I look, wishing that I was thinner.”
Professor Teede says weight gain is not an individual failing.
She says there is a need to improve the way some medical professionals approach weight stigma and manage the medical and psychosocial implications of weight.
“We have to find an empathetic, appropriate way to deal with both.”
For information about the diagnosis and treatment of PCOS, visit Jean Hailes for Women’s Health and download the AskPCOS App for which Professor Teede is the lead researcher.
And of course, talk to your trusted medical professional.
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