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Support for polycystic ovary syndrome’s lifelong conditions lacking, survey reveals

  • Survey and interviews by the University of Warwick with women with polycystic ovary syndrome shows information on long-term health implications is lacking
  • Support and public awareness too focused on fertility, with lifelong implications ignored
  • Condition can lead to obesity, sleep apnoea, hirsutism, acne, and increased risks in developing type 2 diabetes and mental health issues
  • 1 in 5 women in the UK are thought to have the condition

Treating polycystic ovary syndrome (PCOS) as only a fertility condition is leaving those with the condition at greater risk of developing related long-term health conditions, according to women surveyed and interviewed in University of Warwick research.

As part of a study by Warwick Medical School into the experiences of women with the condition, researchers found support and awareness lacking for other symptoms of PCOS, such as obesity, sleep apnoea, hirsutism, acne, and increased risks in developing type 2 diabetes and mental health issues.

The research, published this week in the British Journal of General Practice and funded by the Royal College of General Practitioners, surveyed 323 women with PCOS about their diagnosis and daily experience of the condition.

In polycystic ovary syndrome, women experience problems in ovulating and the menstrual cycle is disrupted. It is thought to occur in as many as 1 in 5 women in the UK. Although it is well known that the condition causes infertility and problems conceiving, what is less known is that it is also associated with difficulty in controlling weight, sleep difficulties, and an increased risk of developing type 2 diabetes. Those with PCOS are also more likely to experience mental health problems such as depression.

When surveyed, the researchers found that 83.1% of women felt they were given little information on the long-term complications by their health professional, and the information they were given was focused too much on the fertility implications of the condition.

Lead author Dr Sarah Hillman, from Warwick Medical School, said: “We found that women weren’t being told about the long-term increased risks, or only told about some of them. For example, they weren’t necessarily seen as being at increased risk of diabetes. This means that these issues are not being addressed and those women have to find out through other means, through online sources, peer support groups, charities and other channels.”

The research also revealed that 74.9% of women with PCOS had experienced mental health issues, but only 34.9% could recall this being discussed with their GP.

Dr Hillman added: “There is an increased risk of mental health problems alongside physical health problems, but our research shows that women are often not disclosing this and health professionals are not always asking.

“We should be viewing it as a condition that affects women in a number of ways throughout their life course. It is not just about ovaries.”

The researchers argue that there needs to be greater awareness of the implications of the condition, both among the general public and health professionals. Education for health professionals should focus on reconsidering PCOS as a lifelong metabolic condition and not one of fertility.

Dr Hillman adds: “Getting the right information to women in a timely fashion, makes that information empowering. If you have the correct information you have more awareness of your own health. For instance if you know you’re at higher risk of diabetes, you may focus more on weight control. This is about empowering women to take control of their health.

“The word ‘ovary’ in the name suggests to people that this is a problem just around ovaries, but it is just one piece of the jigsaw puzzle of the health of these women.”

  • ‘Women’s experiences of diagnosis and management of polycystic ovary syndrome: a mixed-methods study in general practice’ is published in the British Journal of General Practice, DOI: 10.3399/bjgp20X708881

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For interviews or a copy of the paper contact:

Peter Thorley
Media Relations Manager (Warwick Medical School and Department of Physics)

Email: peter.thorley@warwick.ac.uk

Tel: +44 (0)24 761 50868

Mob: +44 (0) 7824 540863