PCOS is a very common metabolic, hormone and reproductive disorder that affects anywhere from 10% to up to 21% of women in some parts of the world. The disorder is characterized as a constellation of symptoms that can impact multiple aspects of a woman’s life and health, including metabolic, reproductive and mental and psychosocial health.
At 16 years of age Laura 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, Laura asked her mum to take her to their local GP.
After a number of blood tests, Laura 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, 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.
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.
“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.”
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 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
A study released 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.
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.