TRANSCRIPT:
Polycystic ovarian syndrome, or PCOS, is a condition experienced by an estimated one in eight women.
Lorna Berry is one of them.
"I found out by reading a magazine and seeing an article about PCOS - and some of the symptoms that they were describing I identified with and had those characteristics as well. I then went to my GP and ask questions but was dismissed, and I was dismissed by more than one GP at that time. And eventually after about a couple of years, I was able to get a diagnosis, which was a bit like getting the missing piece of the puzzle that explained lots of things that had been happening to me that were kind of unexplained over the years."
As a teenager, Ms Berry says she struggled with fluctuating weight, despite having a healthy lifestyle, and was told by her doctor to change her diet.
PCOS is one of the leading causes of infertility for women - for Lorna, she says it took her years to conceive her first child.
Ms Berry says it's been a constant battle to be taken seriously.
"You have to fight. You have to fight to get diagnosed in the first place, but you continue to have a battle because people judge you by what you look like. They feel free to comment if you've put on weight or if you've lost weight. And that has happened to me throughout my life. In fact just last week, I had not seen someone for some time and I was at a funeral and someone said oh you've lost more weight - which is not how you greet at a funeral. It's just totally bizarre to me that someone or anyone would feel free to comment on somebody else's appearance, as a first thing they say to them."
Lorna's experience is not uncommon.
An expert on PCOS from Monash University, Dr Anju Joham, says the system as it currently stands does not do enough to support women.
She says the emphasis has been on ineffective behavioural-based solutions.
"We really do need widespread evidence-based, multidisciplinary patient-centred models of around the world that can offer care. The majority of women with PCOS needs to be able to provide women with high quality resources, tools and healthcare delivery. We're working with women and clinicians around the world to scale up the PCS model of care that we've developed to try and improve health outcomes for women with PCOS."
Monash University has now released a new guideline for P-C-O-S that it hopes will change the experience of women facing under-diagnosis and treatment.
It recommends significant changes, including using hormone tests instead of ultrasound for diagnosis, optimised pregnancy care, and evidence-based therapies.
Monash has also developed an app called Ask PCOS which patients can access to help in managing their condition.
The project has involved more than 100 experts and patients, and partnerships across 71 countries and six continents - with Professor Helena Teede at the helm.
"The main problem with this condition is it's under diagnosed under recognised and very much neglected. It's often thought about as an ovary-only disease and then it involves cysts on the ovary and neither are correct. But that's a historical layover from an incorrect name when we didn't understand the condition. So what we're aiming to do here is to develop the best evidence based practice recommendations for women and for their health professionals and for those affected by PCOS, to make sure that they get a timely diagnosis, and really trustworthy, accurate information about how to manage their condition."
Professor Teede says timely diagnosis and treatment is important to help prevent other health problems later on.
"The most important message is that this is not a condition of the ovaries, and it's not just a women's health condition that should be seen by a gynaecologist. This is something that is lifelong. It's different between individual women, and it changes over the lifespan. So for those who are affected by the condition or think you might be, make sure you're well informed, get an early diagnosis, and recognise that it is not only about reproductive features. There's a much higher prevalence of gaining weight faster, of diabetes and of heart disease in this condition, and most importantly there's about 70 to 80 percent of people with this condition have increased anxiety and depressive symptoms, and they're usually neglected."
A forum to discuss changing the name of PCOS is scheduled for later this year, in hopes it will shift the focus to the wider impacts of the disease.
Government funding could also support an upgrade of the app to include 11 languages, giving more people from diverse background access to the information they need.
But Federal MP Craina Garland says much more needs to be done to prioritise women's health, with the impact of PCOS costing the Australian health system an estimated $800 million a year.
"PCOS is a serious condition with serious effects impacting millions of women in our country deserves more attention, more research, continued investment in government that I'm part of the Albanese Labor government is prioritising women's health and I think it's about time that governments take this step to do so. This year we granted a substantial increase in funding through our medical research Future Fund to support the development of PCOS resources and tools, including the Ask PCOS app. This funding will advance personalisation, interactivity, self management and the analysis of individual data that will aid shared decision making and improve information models of care, support for people with PCOS."
Meanwhile, Lorna Berry says it's her hope that women in the future are listened to when they know something is wrong.
"This guideline is so important so we don't have all of that untrue information out there in the wild with people passing an opinion - because everybody has an opinion. So evidence-based research is so important. The ASKPCOS app has all of that in it and that's really powerful for women with PCOS. We want to be seen, we want to be heard, and we want to have validation about what's going on."
