A doctor explaining a model of a uterus to a patient

Tip of the iceberg: highlighting the long-term health consequences of polycystic ovary syndrome

  • Research

Polycystic Ovary Syndrome (PCOS) has traditionally been thought of as a reproductive disorder, meaning that patients don’t ovulate and have problems with fertility. However, the lived experience of patients tells a different story and the significant health consequences of this common, complex metabolic disorder are now much better understood.

In a new project to increase awareness of PCOS, led by Professor Michael O’Reilly from RCSI’s Department of Medicine, the voice of patients gives greater insight into what it is like to live with this chronic health condition that affects up to 15% of people with ovaries.

PCOS is typically associated with irregular periods and clinical signs of elevated androgens such as testosterone. Patients will normally experience acne or unwanted hair growth and their scans will show that they have multiple small follicles on their ovaries.

The health problems for people with PCOS include a significantly increased risk of type 2 diabetes, fat accumulation in the liver and cardiovascular disease. The condition impacts their quality of life and results in an increased risk of mental health disorders. Some patients retire early from their working careers and experience a higher risk of sleep disorders such as obstructive sleep apnoea.

In a short film developed by RCSI with patient partner PCOS Vitality, we hear from patients, clinicians and researchers. Edel, who is 22 years old, shares how the significant pain she experiences with her period makes it hard for her to do day-to-day activities when it is at its worst. She also talks about getting involved in research studies so she can help other people with the condition. 

Professor O’Reilly talks about the role of medication and lifestyle measures in improving quality of life. Dr Tara McDonnell and Dr Leanne Cussen talk about their PhD research to investigate insulin resistance in PCOS and Maureen Busby, CEO of PCOS Vitality, speaks of her work to support patients, raise awareness of PCOS and give patients a voice. 

The RCSI –PCOS Vitality collaboration also curated a new website, developed a game to increase awareness of PCOS and test knowledge and spoke with post-primary school students.

This awareness project was funded by the Health Research Board under the fifth round of the Knowledge Translation Awards. The scheme allows HRB grant holders to apply for additional funding to what is normally allocated to every HRB grant for communication and dissemination activities. Professor Reilly received funding under the HRB Emerging Clinician Scientist Award in 2020 for a four-year research project on the mechanisms behind metabolic disease in polycystic ovary syndrome (PCOS).

RCSI is committed to achieving a better and more sustainable future through the UN Sustainable Development Goals.