It's no surprise that women with polycystic ovary syndrome (PCOS) feel confused and overwhelmed.
Even though about one in 10 women (or those assigned female at birth) suffer from PCOS, they often aren't familiar with the symptoms, including excessive hair growth (or loss), and heavy, irregular periods.
This also means that doctors and other health professionals — who are usually only given one hour of medical education on the condition — can be unaware of the symptoms, and instead dismiss women as simply overweight.
But weight gain also happens to be the number one concern for those who have been diagnosed, according to the latest draft international guidelines on PCOS.
With a strong focus on women's personal experiences, the guidelines also highlight how weight stigma (being judged and discriminated against based on our weight) can prevent people from getting the treatment and support they need.
"The health system is failing these women without question," says Professor Helena Teede from Monash University, the lead author on the guidelines.
A quick recap on PCOS
In a nutshell, high levels of insulin (the hormone responsible for regulating blood sugar levels) can lead to weight gain, while excess androgens (including elevated testosterone levels) can change the way body fat is distributed — commonly around the stomach.
These hormonal changes create a "vicious cycle" with regard to weight, says Professor Teede.
"[Weight gain] manifests with PCOS and then their symptoms are likely to be worse. On top of that, the judgement they then face around eating less and moving more is definitely unhelpful," she says.
But there is evidence to suggest that in some cases, weight loss is beneficial.
For those with "excess weight", reducing total body weight by as little as 5 per cent has metabolic, reproductive and psychological benefits.
The guidelines therefore call for an overall focus on a "healthy lifestyle" (more on that later), as well as the prevention of weight gain. In some cases, "weight management" includes weight loss.
But Professor Teede stresses that higher weight is only one indicator of health.
She says women need ongoing support from the health system -- ensuring they are empowered to advocate for themselves.
The 'restriction, guilt and shame'
Many women have reached out to the ABC, sharing their stories of feeling unsupported by healthcare workers who are overly focused on their weight.
One of those women is Alison Brunton. For her, it was a missed period at 18 and concerns that she might be pregnant which led her to book in a visit with a GP.
"Once receiving the diagnosis [for PCOS], immediately it was all about weight loss," she explains.
With nothing much to go on but a piece of paper about the glycaemic index (a rating system for food containing carbs) and a pill script, Alison was sent on her way.
"I was basically told if you lose weight, you'll be fine. You won't have any problems," she says.
But Alison's PCOS diagnosis was one of a number of factors that led to her developing an eating disorder.
Ten years later — and dangerously close to death — Alison was diagnosed with anorexia nervosa and hospitalised.
"I remember thinking: 'I've got two choices. I could take the body positivity path, or I could choose the dieting and disordered eating path'," she says.
There isn't any strong evidence on how common disordered eating and eating disorders are for women with PCOS, but Professor Teede says the "restriction, guilt and shame" we experience puts us at a much higher risk.
Alison, who is now 33, has since recovered from anorexia but is constantly confronted by unhealthy attitudes about diet culture.
As a nurse who has also studied public health and nutrition, she wants the system to move away from "shaming" women with PCOS and instead "give people a choice" about how they manage their own health.
It's something the upcoming guidelines will focus on — to improve education and knowledge around PCOS not only for health workers but for patients as well.
"[Women with PCOS] know something's wrong. But it's trivialised, it's stigmatised," Professor Teede says.
"It all comes back to seeing excess weight as a problem of the individual and therefore their fault and within their control."
The 'unsexy' path to PCOS health
So how can doctors best support women if higher weight is a risk factor for PCOS, and weight gain itself can make the condition even worse?
While the guidelines acknowledge that sufferers are more prone to weight gain and "excess weight", more research is needed to understand why this is the case.
Professor Teede says for many, it's not about having a "weight goal" but maintaining weight.
The guidelines recommend giving women options — including supporting intentional weight loss or creating healthy lifestyle changes without a focus on losing weight.
These include "sustainable healthy eating tailored to individual's preferences and goals" as well as tailoring diets to food preferences, allowing for "a flexible, individual and co-developed approach to achieving nutritional goals" while avoiding restrictive eating behaviours in patients.
Healthcare workers are also urged to "seek permission to weigh women" and offer the combined contraceptive pill to help with irregular periods — as well as other medications to balance hormones and reduce symptoms.
"[PCOS] is different to most chronic conditions in that it has to be shared decision-making [with the patient]. The person with the condition has to be empowered to work with health professionals who have a responsibility to be educated and care for women, based on their priorities and needs," Professor Teede explains.
And she says there's "no one best diet" for PCOS — rather the evidence supports an overall "healthy diet".
That's despite an abundance of restrictive or "hormonal" dietary advice from influencers or health "experts" on social media.
"Anyone who starts with that, you know you're about to lose money," she adds.
Research also supports staying active — which Professor Teede says can be as little as 11 minutes of walking per day.
Nina Mills, a dietician and eating disorders clinician who often sees women with PCOS, says stories like Alison's are far too common.
"They've done all these diets and are feeling really frustrated that all they keep being asked to do is lose weight," she says.
Many clients come to her after seeing their GP and being told to try specific diets, such as intermittent fasting, she says.
Often, that leads to disordered eating and eating disorders.
But she says supporting our bodies "as it is right now" is crucial.
"People actually have to eat enough, and they have to eat a wide variety of foods," she explains.
"It's boring, unsexy stuff. Asking people to not be eating exacerbates all of that stress."
'The only body I'm ever going to get'
While Alison's case is an extreme example of the impact of weight stigma, Halle Brown's story highlights how finding the right support early is critical.
At 17, Halle was put on the pill for her acne — another common symptom of what she later discovered was PCOS.
It wasn't until she moved from regional Victoria to Melbourne that she found a doctor that would diagnose her and help her understand that her weight was a symptom of the condition.
While she's had a bad experience with one dietician in the past, who "shamed me for not being able to avoid carbs", the now-25-year-old says accepting "the only body I'm ever going to get" and researching as much as she can on PCOS has made all the difference.
"[PCOS] is always with me, and I can't change that," she says.
As an artist, she now creates work around plus-sized bodies and her own experience with the hormonal IUD — a small, contraceptive device that sits in the uterus. It's a common option for help manage irregular periods.
Another evidence-based way to manage weight includes metformin — which helps control blood glucose (sugar) levels and reduce the body's resistance to insulin.
The guidelines recommend metformin for some patients as part of a healthy lifestyle — something Halle now takes and has also explored in her art.
Body empowerment has been healing for Halle, but moving forward, Professor Teede says the guidelines should lead to more supportive relationships with patients and doctors.
"Knowledge in the health professional community isn't good enough, and there's inappropriate judgement and stigma. But it is evolving," she says.
While Professor Teede says this isn't about "doctor bashing", there needs to be more investment in research — as well as more education for health workers — to foster supportive and respectful relationships with women suffering PCOS.
"It has to be a shared responsibility without bias, stigma and judgement," she adds.
A free ASKPCOS app continues to be available for patients, which is currently used by women across almost 200 countries.
The guidelines are due for release in July.
