By Rebeka Powell
At 16 years of age Laura Starr noticed she was rapidly gaining weight which, despite all her efforts, seemed impossible to lose.
Coupled with an irregular menstrual cycle and the early signs of excess hair growth on her face, Ms Starr asked her mum to take her to their local GP.
After a number of blood tests, Ms Starr was diagnosed with polycystic ovary syndrome (PCOS) — an endocrine disorder which affects up to one in five women in Australia and an estimated 116 million women globally.
Now 27, Ms Starr has struggled with self-confidence since being diagnosed.
“Occasionally people would tell me that I had something on my chin without realising that it was hair growth [and] it would make me extremely uncomfortable and upset,” Ms Starr said.
“I have grown to be comfortable around my family with the excess hair because they understand. However, I refuse to go to work or anywhere else without it being shaved or waxed.
“There’s nothing more unwomanly than having to shave your face every day and struggling to do one of the [primary] things women were designed to do — having a baby.”
The symptoms of PCOS include excess hair (hirsutism), hair loss, acne, weight gain, infertility, increased risk of psychological disorders and symptoms associated with periods.
Up to 70 per cent of women with the condition go about their lives plagued by these symptoms, but remain undiagnosed and without answers.
The ABC surveyed 250 women online about their experience with PCOS and its symptoms.
In the worst-case scenario, untreated PCOS can lead to complications such as type 2 diabetes, infertility, and uterine cancer.
But it is rare for two women to present the same symptoms and there is no cure-all treatment which makes the condition difficult to diagnose and more difficult to manage.
‘It’s something you can’t see’
Distressed by irregular and heavy periods, 32-year-old Rebecca Andrews was diagnosed with PCOS at 16.
“My mum took me to a number of GPs over the span of a year or so who all said I was ‘too young to have anything serious’ and I was just ‘faking it’ and overreacting and I needed to toughen up,” Ms Andrews said.
“Eventually my mum took me to see her gynaecologist and asked him to check. He did an ultrasound and revealed what he called “textbook” PCOS ovaries.”
A typical ultrasound of a polycystic ovary reveals a high density of follicles (historically described as cysts) on the ovary, which resemble “black holes” and are often arranged as a “string of pearls”.
An ultrasound of a normal ovary will show fewer and larger follicles depending on the stage of the woman’s menstrual cycle.
“On the ultrasound it just looked kind of freakish and I knew it wasn’t supposed to look like a bag of balloons,” Ms Andrews said.
To make matters worse, at 17, Ms Andrews had one of her ovaries removed after it was crushed by a 14 by14cm cyst.
Most ovarian cysts are harmless but they can sometimes rupture and cause extreme pain.
She has since undergone in vitro fertilisation (IVF) treatments and suffered six miscarriages.
“Mentally, the miscarriages affect me most … infertility is the worst thing about having PCOS,” she says.
Ms Andrews says she went through high school not understanding why adults were telling her to “get over it” and to “get used to it”.
“I’m now an adult and I know it’s not [normal]. It’s also something you can’t see, is hard to explain, and people often don’t want the details.”
Like Ms Andrews, 24-year-old Keira Fenwick is familiar with the struggle of falling pregnant with PCOS.
Between the ages of 22 and 24, Ms Fenwick suffered four miscarriages and is now pregnant again.
“When I was 17, I was told I might not be able to have children,” Ms Fenwick says.
“We’re now five weeks pregnant and facing the possibility of another miscarriage as we have not been able to get past six weeks, but we are hopeful.”
Menstrual problems can make it more difficult for women with PCOS to conceive naturally but with some assistance most women with the condition eventually give birth.
That was the case for Ms Starr who eventually conceived her daughter after four years of fertility treatment.
Other women, like Ms Starr’s sister who also has PCOS, are able to conceive naturally without any fertility treatments.
Ms Andrews has since taken steps toward fostering or adopting a child to fulfil her hopes of being a mother.
The answer to everything is ‘lose weight’
Some studies show the rate of miscarriage in women with PCOS to be as high as 50 per cent and the most common advice for women hoping to improve their chances of falling pregnant is to “lose weight”.
“Life-style management” (diet and exercise) is recommended as the first line of treatment because excess bodyweight is proven to exaggerate the expression and degree of PCOS symptoms.
But attempts to lose weight via normal methods is more challenging for women with PCOS — they are more insulin resistant than women of the same weight with normal ovaries, which makes it more difficult to burn body fat and puts them at higher risk of diabetes.
Beyond lifestyle advice, there has been limited consensus among doctors and specialists about how best to treat the symptoms.
PCOS requires ongoing management and there is no one-size fits all approach.
Contraceptives, metformin (an insulin-lowering drug) and clomiphene (to treat infertility) are the main pharmacological treatments but there has been limited evidence of their effectiveness.
Add that to the fact there is no agreed upon approach to diet and exercise among health professionals; women with PCOS feel frustrated and hopeless.
Despite being given the comfort of a diagnosis more than a decade ago, Ms Starr says she is yet to receive professional medical advice that has actually eased her symptoms.
“There’s not much information or help for women suffering,” Ms Starr says.
“Every doctor I’ve seen has blamed me and said that if I lost weight [the other symptoms] would miraculously disappear.
“It felt like they thought I was using my PCOS as an excuse for not being active because I was visibly overweight.”
‘Doctors don’t believe there’s anything wrong’
The ABC’s survey of more than 250 women who said they had been diagnosed with PCOS found that, like Ms Starr, many viewed their exchanges with health professionals in a negative light.
“Doctors don’t believe there is anything wrong with you. I had to go to seven [doctors] before someone believed me.”
“It feels like you’re an inconvenience to them.”— Erin P
“A lot of doctors still tell me it’s in my head.” — Pauline B
“After six years of misdiagnosis, I researched it myself and then went to the doctor. I asked for an ultrasound believing I had PCOS and to everyone’s surprise, I was correct.” — Kaicee J
“I saw numerous doctors and nobody could say that’s what I had. I had to prove it to them.” —Melissa R
“People don’t understand what I am feeling and medical professionals are unable or unwilling to offer help.” — Peggy P
Working for clearer diagnoses
Leading expert Helena Teede, from Monash University, says a major part of the problem to date has been the absence of guidelines with education and support for healthcare providers.
“Women have really long delays in diagnosis — some of them up to two years — and their symptoms are not adequately assessed,” Professor Teede says.
“It’s not that GPs ignore them … it’s a complex condition and it’s hard for GPs to get their head around how to diagnose it.”
In 2011, the Polycystic Ovary Syndrome Association of Australia (POSAA) worked with Monash University to introduce domestic guidelines for the assessment and management of PCOS.
“One of the big objectives of the guidelines is to make the process of diagnosis clearer and simpler,” Professor Teede says.
Professor Teede is the director of a major project, led by the Centre for Research Excellence in PCOS, to update and expand the existing evidence-based guidelines beyond Australia.
The project has involved 71 countries, 44 research group and thousands of women affected by PCOS from across the world.
Professor Teede says the expanded international guidelines will address all the gaps and outcomes that women thought were most important.
More than 80 per cent of women surveyed by the ABC said they felt there was not enough information available about the condition and more than half said they had never heard of PCOS prior to their diagnosis.
“What has been a really clear message from women is they are getting inadequate care, and then from health professionals that they’re finding diagnosis difficult,” Professor Teede says.
“One of the reasons is because we still don’t fully understand the condition.”
Psychological impact under-researched
The absence of international evidence-based guidelines has also meant the prevalence of mental health issues among the community have been overlooked by health professionals.
A study released this month by researchers at Cardiff University found women with polycystic ovaries are more likely to suffer from mental health problems.
Among a group of 17,000 women diagnosed with the condition, the study found 23.1 per cent of women had depression, while 11.5 per cent had anxiety and 3.2 per cent had bipolar disorder.
Attempts to manage the condition itself, fears regarding infertility, loss of femininity, body image concerns and lower self-worth are all contributing factors to the mental state of women with PCOS.
Almost 70 per cent of the 250 women the ABC surveyed said they had clinically-diagnosed depression and anxiety issues as a result of the condition. And more than a quarter of women who said weight-gain was one of their symptoms reported body image and self-esteem issues.
“I feel like a big fat sack of shit,” one woman said.
“I feel like a hairy, ugly, moody defect. I don’t feel sexy or beautiful — I just want to be like other girls,” another said.
Several others expressed sentiments of self-hatred and self-loathing as a result of the condition and its side-effects.
Although research is scarce in this domain, a majority of experts argue the psychosocial burden on women should be recognised and treated as a primary component of the condition.
“The features of the condition cause anxiety and there is evidence for that, [so] being able to provide timely diagnosis and appropriate information is really important,” Professor Teede says.
“One of the most common and saddest scenarios is where a young woman often comes in with her mum and says ‘I’ve been told I’ve got PCOS and I won’t be able to have children’.
“If you imagine … you’ve got severe acne and excess hair growth and you don’t know why, and you don’t know why your periods aren’t coming, and you’re worried you won’t be able to have children — that has a fairly significant psychological impact and causes distress.”
Help is available
But Professor Teede says there is significant help and hope for women living with PCOS.
“We do understand a lot more about the genes now, we’re starting, for example, to be able to say people with this type of gene abnormality in PCOS may respond better to this treatment,” Professor Teede says.
“And we may get to a point where we start to get drugs to work on the real underlying genetic mechanisms — and they’re actually in the pipeline, under development, and it’s quite exciting.
“In the meantime we as health professionals need to be aware, be understanding, listen and support women with PCOS and provide education and resources to help.
“PCOS is not hopeless, women with the condition now have similar family sizes to those without PCOS thanks to simple new treatments.”
The updated and expanded evidence-based guidelines for the assessment and management of PCOS are likely to be finalised in June, and will be released in July 2018 along with a range of support resources including the iAsk PCOS app designed by women for women.