When she went to see her GP to ask about her worsening acne, Kirra Peters* never expected to hear the words ‘polycystic ovary syndrome’ (PCOS). And the 26-year-old public servant certainly didn’t think she’d leave her appointment with little more than the knowledge that she might have a condition she’d never even heard of. “I thought the doctor might write a [referral] to a dermatologist,” says Peters. “But when they mentioned ‘PCOS’, my head went into spin mode because I walked out still knowing nothing.”
It took eight months of appointments with GPs, specialists and a gynaecologist, plus an ultrasound and blood test, for Peters to be officially diagnosed. And even though 10 to 13 per cent of Aussie women are affected by PCOS, this kind of diagnosis delay isn’t unusual. Stats published in The Journal of Clinical Endocrinology & Metabolism show it can take up to two years for women to be diagnosed, with an estimated 70 per cent still not aware they have PCOS. But, thanks to a team led by researchers from our shores, that could all be about to change.
A LITTLE CLARITY
Calling PCOS ‘complex’ is kind of an understatement. In fact, a definition has only just been officially agreed on. We’re talking about a multisystem syndrome with reproductive, metabolic and emotional implications. These can include – wait for it – infertility, pregnancy complications, diabetes, insulin resistance, weight struggles, acne, hair growth (where you’d rather it wasn’t), anxiety and depression. There’s no set-in-stone cause (there are theories around genetics and epigenetics) or cure (there’s some promising research, though). All of this makes PCOS a minefield for women and docs alike.
“It’s a real gap for women. They’re getting poor quality of care, delayed diagnosis, high variability in management and they’re just not well looked after,” says Professor Helena Teede, director at the Monash Centre for Health Research and Implementation and co-director at the Centre for Research Excellence in Polycystic Ovary Syndrome (CRE POS).
“It’s not that health providers [don’t] care, it’s just that it’s a complex condition and it wasn’t well understood.” Clearing a path through the health maze is a team led by Teede, who in July unveiled a groundbreaking set of international PCOS guidelines. The document has been decades in the making, worked on by more than 3500 health professionals, consumers and sufferers from more than 71 countries. It lays out the gold-star, evidence-based practice for the assessment and management of PCOS. Women and pros can access the info via the Monash website and an AskPCOS app. In short, it’s a game changer.
A driving factor behind this global collab? The drawn-out diagnosis process, which was one of the key complaints from women with PCOS, explains Professor Robert Norman, co-director at CRE POS, who also worked on the guideline.
“It was basically patients saying to us, ‘I’ve been to multiple doctors and they all tell me different things,’” he says.
Thanks to the new paper, professionals now have the most accurate way to work out whether or not a woman has PCOS. The key symptoms that form diagnosis? An irregular period as well as OTT levels of androgens (male sex hormones, such as testosterone), either found in the blood or reflected in excess hair growth or acne. This new approach nixes the need for an internal ultrasound, the previous diagnostic go-to.
“If a woman has one [symptom] or the other but not both, then you can do an ultrasound but you don’t need to upfront,” Teede says. “That makes it easier, less costly, less invasive and more accurate to make the diagnosis.”
FYI – women with PCOS don’t actually have cysts on their ovaries. Come again? Basically, the hormonal imbalances affecting ovulation lead to half-developed eggs that only look like cysts. A name like ‘metabolic reproductive syndrome’ would better reflect the condition and foster understanding, experts say.
BUMPS IN THE ROAD
Of course, diagnosis is just step one. Next up: managing the condition. Approaches to this vary (no surprise there) but can be effective, ranging from lifestyle moves (healthy diet and exercise) to meds including the oral contraceptive pill, and tackling psychological concerns such as anxiety. Really, the path you choose depends on your priorities. For Maddie Newman, 30, it’s her fertility. After being diagnosed with PCOS at 16, she went on the contraceptive pill.
Now, Newman and her husband are keen for a baby, but they’ve “been trying to conceive for one year without any luck,” she says. “We’re scrambling to look for answers and find out what we can do to make this happen.”
Newman isn’t alone – PCOS is the primary cause of female infertility, with 70 per cent of PCOS sufferers struggling to fall pregnant, according to the new paper. Despite this, one of the biggest misconceptions is that PCOS will prevent you ever having a family. That’s a message Teede wants us to know: when you have PCOS, having kids is possible with a little extra planning and help.
“Most women with PCOS will have a family, and the average family size is similar to those without PCOS,” Teede says. “However, most need some assistance, usually tablets to achieve pregnancy. IVF is rarely needed.”
The president of the Polycystic Ovary Syndrome Association of Australia, Veryan McAllister, was diagnosed at 21.
“I had a gynaecologist say to my face I was a fertility nightmare,” she says. It took expert advice, lifestyle changes and meds, “but with two healthy children, I’m living proof that’s not the case”. She adds, “PCOS is so common. The more we talk about it, the more we can normalise [it] and the more support we can provide.” Suspect something’s up? Chat to your doc – it could be the most important talk you ever have.
This article originally appeared in the January issue of Women's Health