Page 5 2011-12 Summer
PCOS – the big picture
There is a good chance that you, or someone you know, has Polycystic Ovary Syndrome (PCOS). It’s more common than people realise, affecting 12-18% of women of reproductive age in Australia, and up to 21% in high risk groups. Around 70% of women with PCOS are undiagnosed.
The physical and emotional impacts of PCOS are broad and are not confined to the adolescent and reproductive years; they can impact a woman’s health across a her lifespan. So while early diagnosis is important, so is the long-term management of this often misunderstood condition.
A new national guideline developed by Jean Hailes and the PCOS Australian Alliance has brought together the latest evidence, clinical expertise and the experiences of women with PCOS to create a comprehensive way forward in diagnosing, managing and supporting women who live with this condition.
“The short and long-term consequences of PCOS vary. The condition is an individual journey for each woman at different life stages, and it is a chronic condition,” says Professor Helena Teede, director of research at Jean Hailes and Professor of Women’s Health, Monash University. “It is also a difficult condition to diagnose as there is not enough awareness and recognition in the community. We hope the guideline leads to earlier diagnosis, greater understanding and awareness of the condition by women and health practitioners, greater consistency of care for women and better health outcomes.”
What is PCOS?
PCOS is a hormonal disorder with a collection of metabolic, reproductive and psychological features. To be diagnosed women must have at least two of these features: irregular periods, hirsutism (excessive facial and body hair), high male hormone levels or polycystic ovaries on ultrasound. Psychological features may include poor self-esteem, anxiety and depression and eating disorders. Women won’t necessarily have all of these symptoms and they may vary according to a woman’s age.
What are the risks of PCOS and why do I have it?
Research shows women with PCOS have a four to seven-fold increased risk of developing type 2 diabetes and have increased cardiovascular or heart disease risk factors. Those risks increase if a woman is overweight as this increases the prevalence and severity of PCOS. Some women are also at greater risk of PCOS due to ethnicity e.g. Sri Lankan, Indian and Asian women and Indigenous Australians. Women with a family history of type 2 diabetes or of PCOS are also at higher risk of the condition.
“The causes of PCOS are related to genetics and lifestyle which lead to excess male-type hormones and excess insulin in the body,” explains Helena. When the body’s insulin is not as effective as it should be, (such as in PCOS-related insulin resistance), the body compensates by making more insulin. Higher insulin levels trigger an increase in male hormones and disrupt the normal ovulation cycle, causing eggs in the ovary to stop mid-way through development. On an ultrasound screen, these look like small cysts within the ovary. The eggs do not ovulate, leading to some of the PCOS symptoms outlined earlier.
The sooner the better The new national PCOS guideline focuses on diagnosing PCOS as early as possible to better manage a woman’s present and long-term health. “Unfortunately at the moment the journey to diagnosis is long – a woman sees two to three health professionals and it can take up to two years before she’s diagnosed,” says Helena. She hopes the guideline will better inform women so they can raise possible symptoms with a health practitioner. “There is not enough awareness amongst adolescent girls when features of PCOS often emerge. Instead, girls may be popped on the Pill to regulate their cycle and they aren’t even aware they have PCOS until they come off it years later when they wish to start a family. Then they discover they have PCOS (symptoms of which were masked by the Pill) and may have difficulties getting pregnant or they may have already developed diabetes,” says Helena. “If PCOS can be diagnosed in adolescence we can manage acne, excess hair growth and the psychological impacts at a vulnerable time in a woman’s life. We can also proactively focus on lifestyle to prevent weight gain, because prevention of weight gain is paramount, as well as taking measures to optimise later fertility and prevent complications such as diabetes.”
Being in control of PCOS now and in the future
As well as encouraging a swifter diagnosis of PCOS, the guideline focuses on equipping women with accurate information so they can be proactive in managing PCOS throughout their life. Balanced diet, regular exercise and weight management (including a strong emphasis on prevention of weight gain) is important in reducing PCOS impacts, such as insulin resistance, irregular menstrual cycles, infertility and diabetes prevention. “Prevention of weight gain and a focus on healthy lifestyle is life-long – I can’t emphasise that strongly enough,” says Helena. Not just weight loss once overweight, but prevention of weight gain is vital. “The guideline also draws attention to the emotional wellbeing aspects of PCOS, which has not been done before,” says Dr Marie Misso, Head of the Evidence Synthesis Program at Jean Hailes. Between 28-64% of women with PCOS experience depression compared to 7.1-8% of women without PCOS and 34-57% of women with PCOS report anxiety compared to 18% of women who don’t have the condition. “Previously a woman with PCOS might have had impaired emotional wellbeing but not associated it as a feature of her PCOS and so may not have brought it up with her doctor. We hope that this guideline will encourage women with PCOS to seek support and also prompt health practitioners to consider emotional wellbeing when managing their patients,” says Marie.
The guideline emphasises the benefits for women with PCOS of being supported by an interdisciplinary team including endocrinologists, dietitians, psychologists, gynaecologists and general practitioners who communicate with each other and with the woman about managing her condition. “We’ve recommended a holistic approach to PCOS requiring an interdisciplinary diagnosis and treatment,” says Linda Downes, Project Manager, PCOS Australian Alliance and Jean Hailes. “We would like to see clinicians from different disciplines managing the same patient talking to each other and making sure the patient is included, and indeed at the centre of all decisions.” A comprehensive translation program is now being rolled out to health practitioners, healthcare organisations and women across Australia with PCOS. This will include seminars, video conferences, podcasts, written information and other free material available at www.managingpcos.org.au. “If women are well-informed about their treatment options, the relevant health professionals are involved and women are at the centre of that care, that will make all the difference,” says Helena.
The evidence-based guideline for the assessment and management of PCOS
Launched on 29 August 2011, the guideline is a comprehensive document aimed at raising awareness and understanding of PCOS and its implications. It is designed for use by health practitioners and women with PCOS. Developed by a multidisciplinary team of 37 expert health professionals, consumers and systematic reviewers, the aim is to bring together the best available evidence, clinical expertise and the experiences of women living with PCOS to promote timely diagnosis, accurate assessment and optimal management of the condition.
Consistency of care and the prevention of complications are also key aims behind the guideline development. Professor Helena Teede led the guideline development and hopes it will see more early diagnosis of women with PCOS so they can be managed before the condition seriously impacts on their physical and emotional health. The guideline will also ensure women with PCOS can find accurate, up-todate information about PCOS and discover what they can do themselves to best manage it.
“There are limited clinical guidelines and currently no other publicly accessible international evidence-based guideline to inform women and health professionals about PCOS,” says Linda Downes, Project Manager, PCOS Australian Alliance and Jean Hailes. The new guideline has been developed by Jean Hailes, the PCOS Australian Alliance and women with PCOS, with funding from the Department of Health and Ageing. It is endorsed by the Royal Australasian College of General Practitioners and the Endocrine Society of Australia.
A free copy of the guideline can be downloaded from
Jean Hailes PCOS Service
Since early 2011, Jean Hailes Medical Centre has offered a dedicated PCOS service to women with a confirmed diagnosis of PCOS. The service is delivered according to the evidence-based guideline and provides access to a team of specialists, including an endocrinologist and dietitian, who provide detailed and practical information about PCOS, the symptoms, the potential physical and psychological impacts of the condition, and the treatment options available. Women attend the service over three appointments and receive a resource kit and education session on PCOS, specialist review and a ‘lifestyle management program’ that highlights the importance of healthy eating, physical activity and goal-setting. In consultation with the specialist team, women create a management plan to take to their GP so their ongoing PCOS care can be integrated and effective. The challenges of living with PCOS and the toll this can take on emotional wellbeing are also discussed during the appointments and help is provided for women who may be experiencing anxiety, depression or body image issues. “The service is not prescriptive,” says Professor Helena Teede, who works as a consultant endocrinologist in the PCOS Service. “It’s a supportive environment with more of a health coaching and lifestyle change approach rather than taking a short-term dietary approach. We encourage women to make small but long-term and sustainable changes to their life to manage PCOS.”
A GP referral is required to attend the PCOS service.
For more information, visit www.managingpcos.org.au/jean-hailes-pcos-service
Content Updated November 2011