Leading expert deconstructs the most common misconceptions

Polycystic Ovarian Syndrome (PCOS) is increasingly common, affecting about 1 in 8 women of reproductive age. Yet misconceptions abound, and it starts with the name, says Dr Helena Teede, endocrinologist and Professor of Health Research Implementation at Monash University.

‘PCOS’ is a misnomer that focuses on one sign of a much more complex syndrome.

“It’s not an ovarian disease and there are no pathological cysts,” Professor Teede says.

“When you call something green and it’s actually a rainbow, it’s very hard for people to see beyond the green.”

Professor Teede is also lead author of the International Evidence-based Guideline for the Assessment and Management of PCOS 2023.

Here she dispels four other common misconceptions.

Misconception 1: PCOS is a disease of the ovaries without much impact beyond fertility issues

PCOS is a complex condition with cardiometabolic, psychological, dermatological and reproductive features that go well beyond infertility.

“Women don’t do well with this condition, about 80% have depressive symptoms, 77% have anxiety symptoms,” says Professor Teede.

Along with depression and anxiety, women with PCOS are also more likely to develop eating disorders.

On the whole, PCOS has been underestimated and underdiagnosed by medical professionals.

And while women with PCOS do tend to take longer to conceive, it doesn’t have to be that way, Professor Teede says.

With early diagnosis and effective, evidence-based treatment, most women should be able to achieve the family they want, she says.

Professor Teede recommends developing a reproductive plan with your patients well before they wish to start a family.

This may include a healthy lifestyle plan and preventing weight gain, preconception screening for hypertension and glucose tolerance testing.

“It’s a lifelong condition, and late diagnosis or misdiagnosis has really serious health impacts for women,” says Professor Teede.

Misconception 2: PCOS should be managed by fertility specialists

Professor Teede says many women can be effectively managed in primary care through education (with help from resources such as the AskPCOS app), healthy lifestyle and oral therapies— without expensive and more invasive therapies.

“These women should not need IVF and should not be having IVF unless there are other reasons for their infertility,” she says.

In the absence of validation from their doctor, women are vulnerable to misinformation and expensive alternative therapies, especially those experiencing unexplained infertility.

Professor Teede urges GPs to focus on:

1. Diagnosis (see the updated Diagnostic Algorithm in appendix 1)
2. Screening for complications – Algorithms 2 and 3 at the back of the guidelines focus on screening for emotional wellbeing and lifestyle issues
3. Preventing complications

Misconception 3: PCOS diagnosis is complicated

New diagnostic criteria released with the 2023 guideline mark a transition away from the controversial Rotterdam consensus criteria.

“The diagnosis is now much clearer. It’s actually really simple,” Professor Teede says.

In many patients, a diagnosis can be made following clinical history and examination, without the need for an ultrasound or bloods.

The latest diagnostic algorithm can be found on page 232 of the guidelines, here.

You can find a more detailed summary of the new diagnostic criteria in this article.

Misconception 4: PCOS symptoms can be effectively managed with the oral contraceptive in primary care

Oral contraception simply masks one symptom of PCOS (irregular menstruation) and runs the risk of delayed diagnosis, a lack of disease management and an unnecessarily invasive and expensive journey to conception, Professor Teede cautions.

Currently, many women are only discontinuing the oral contraceptive right when they wish to conceive.

“They’re likely to have a long time to conception, a very expensive pathway with fertility treatment, long inter-conception periods, they’re more likely to be depressed, they’re less likely to get the family size they want, they’re more likely have advanced maternal age. And they have shocking outcomes in pregnancy. So that happens because, way back, when they were in their adolescence, we put them on the pill and said, don’t worry, dear, you’ll be fine,” Professor Teede explains.

Once they do conceive, they are at greater risk of complications and poor outcomes, including miscarriage, gestational diabetes, placental insufficiency, hypertensive disease and caesarean section.

Key points

1. PCOS is a complex and varied condition with significant impact on quality of life
2. GPs are critical to the correct diagnosis and clinical management of women with PCOS
3. Implement a reproductive plan well in advance of planned conception for improved pregnancy outcomes
4. Refer patients to the AskPCOS App for evidence-based information tailored to patients’ signs and symptoms.