Women wait years for polycystic ovary syndrome diagnosis: Monash study reveals

PCOS

Nearly two in three women were dissatisfied with the length of time they waited and the number of healthcare professionals they had to see before receiving a polycystic ovary syndrome (PCOS) diagnosis, according to a Monash University study.

Nearly half of the 1,385 women surveyed in the landmark study saw three or more healthcare providers before they were diagnosed, and the diagnostic process took more than two years for a third of survey respondents.

Monash School of Public Health and Preventive Medicine Professor Helena Teede said not only were diagnosis timelines long but also lacking, with less than a quarter of the survey respondents satisfied with the information they received about common treatments for PCOS.

“Despite the misleading name, PCOS is not primarily an ovarian condition, but instead a hormonal disturbance that is often inherited. PCOS’ diverse set of metabolic, reproductive and psychological features need to be addressed.

“Given the prevalence of PCOS, it is important for women and healthcare professionals to be more aware of the condition,” Professor Teede said.

The cross-sectional study involved an online questionnaire for women with PCOS who were at least 18 years old and had been diagnosed with the condition. Respondents lived in 32 countries.

“Our findings show women are dissatisfied with the diagnosis experience and that there are clear opportunities to improve awareness and health outcomes for women with PCOS,” Professor Teede said.

The survey results will be used to inform international efforts to improve PCOS education.

"This study verifies what we, the patients, have always known and experienced. It is a damning report into our care; quality education, awareness and improved services are essential if we want to improve diagnosis and treatment outcomes for patients with PCOS," Australian Polycystic Ovary Syndrome Association of Australia (POSAA) President Veryan McAllister said.

An estimated 9 to 18 per cent of women of childbearing age have PCOS. Women who have the condition face an increased risk of developing diabetes, cardiovascular disease, and symptoms of anxiety and depression.

PCOS is a chronic disorder that impacts metabolic psychological and reproductive health, especially infertility. Women are diagnosed when they have at least two of the three key features of the condition:

  • Ultrasound findings of immature eggs in the ovaries, which appear like cysts and are called polycystic ovaries
  • Slightly higher levels of testosterone and other androgen hormones than average; and/ or increased body and facial hair
  • Infrequent or no menstrual periods.

The study, “Delayed Diagnosis and a Lack of Information Associated with Dissatisfaction in Women with Polycystic Ovary Syndrome,” can be accessed here.