Emily* was diagnosed with polycystic ovarian syndrome (PCOS) in the week of her 17th birthday.
Struggling with terrible periods and health issues since she was 13, it was a lengthy journey to an answer.
“I was relieved to finally have a diagnosis but was heartbroken when I realised what I was diagnosed with," she says.
Now 20, Emily is still feeling the effects of that discovery.
"Being told at such a young age [that] I will have many struggles with fertility; have weight gain; be in constant pain; and many, many other complications - has affected my self-esteem."
PCOS is a hormonal condition caused by an increase in androgens and insulin. It affects up to 18 per cent of women of reproductive age and up to 21 per cent in some high-risk groups - such as Indigenous women.
. Symptoms of PCOS may include:
- weight gain
- excessive hair growth
- irregular periods
- anxiety and depression
- diabetes and infertility
Treatment currently includes the contraceptive pill and metformin (an insulin-lowering drug).
In October 2018, researchers from Monash University developed a series of world-first guidelines for diagnosing and treating PCOS. The research overhauled previous recommendations, which relied on outdated information to diagnose and treat the syndrome.
Ultrasounds have typically been the single diagnostic tool, but researchers from Monash found that just having irregular periods and showing signs of other symptoms was enough to diagnose someone with the condition.
Their new guidelines emphasise the physiological and lifestyle effects of PCOS, whereas previous approaches have focused on the bodily symptoms, like irregular periods or difficulty conceiving.
Dr Rhonda Garad was on the team of researchers who developed the guidelines. She says that on average, it can take about two years and up to three health practitioners, before a woman can get a diagnosis.
"Often it is only when women are unable to get pregnant that they find out they have PCOS," she explained.
The guidelines were distributed through a variety of women's health organisations across the world.
"All of our materials were designed [in conjunction] with the people who will use them," Dr Garad said.
Our focus is to get these materials out to as many people as possible.
- Dr Rhonda Garad
Along with the guidelines, Dr Garad and her team developed an app called AskPCOS, which can be used to find answers to frequently asked questions; watch videos recorded by experts; and prepare questions ahead of health practitioner appointments.
However, many women are still unaware of the guidelines or have never discussed them with their health care provider.
A lot of women also feel dismissed - by male doctors in particular.
Kellie Rennie, 20, believes there should be more doctoral support for PCOS sufferers.
"I was extremely lucky to find a male doctor who is doing everything he can to help me," she explains. "But male doctors seem to have an ignorance towards PCOS which leaves us being neglected medically.
"I tried to bring up my issues for four years with other doctors... bouncing between six of them. None of them helped, and they all told me I just needed to lose weight and I would be fine.
"I even had a female doctor tell me this."
Olivia Blasi, 23, says it's depressing to know you've had a condition for most of your life because doctors refused, or weren't able, to help.
"... 'cause as a larger woman I was going to them looking for help and answers. and constantly so many were turning me away.
"People underestimate how much finances actually affect the conditions. I've had medications like creams to help the PCOS rashes on my face that I haven't been able to afford because they're nearly $100."
After receiving the wrong advice from doctors and having unsuccessful treatments, Sophia Tremenheere decided to take a different approach.
"I made some decisions to re-train in health and nutrition, and it was through that learning that I realised healing myself wasn't just [about] the nutrition side of things but it was actually changing my lifestyle and mindset [too].
"And I realised healing also came from within... I had to actually work a lot on my self-love. And that really helped me."
Sophia now gets her period regularly, every 28 to 30 days.
She also counsels other people with PCOS through a private Facebook group she started to help women "empower themselves" and "get in tune with their bodies."
Martina Butjier joined a group in November, just before undergoing surgery: "... because I don't really know many people who have [PCOS]. It's really helped me, I don't feel so alone.
Hopefully there's more awareness and there's more help for us because yeah, it really sucks. It really does.
Olivia Blasi agrees.
"They (doctors and the public) don't understand that... women with this disease are fighting to do any little activity they can each day. People just look at them and think they're lazy."
Kellie Rennie says there also needs to be more awareness of the costs associated with having PCOS.
"We need specialists not to cost an arm and a leg, we need medication not to leave me not eating for a week because I have to choose between eating or being pain-free.
"We need to be heard."
- Kate Atkinson @katebatkinson