Polycystic ovary syndrome and suicide: the need for more support and guidance

By Dr Sophie Williams - 15 May 2023

I received an email the other day from a grieving mother who had lost her daughter, Emma, to suicide. Eight months before her loss, her daughter had been diagnosed with polycystic ovary syndrome (PCOS).

Polycystic ovary syndrome (PCOS) is a hormonal (endocrine) condition which impacts women and girls of reproductive age. It affects menstrual regularity and fertility and can cause excess hair (hirsutism), acne and weight gain. We also know people with PCOS are more likely to be diagnosed with psychological conditions such as depression and anxiety than people without PCOS (Douglas et al., 2021).

Young girls at risk

Research also suggests young girls are an at-risk group for thinking about (ideation) and attempting suicide. In the UK, suicide rates among young girls with mental health conditions have been rising. Nearly 50% of young girls with a mental health condition report self-harm or suicide attempts (RCPCH, 2020).

Mental health not only impacts the individual, but it also presents a large cost to the health systems. A report by the Endocrine Society in June 2022 identified that the cost of mental health disorders associated with PCOS in the US reached almost $6 billion in 2021. Despite this prevalence and cost, we know very little about wider associations of mental health and PCOS, including the role and prevalence of self-harm (also known as non-suicidal self-injury or NSSI), and suicide ideation and intent.

Initial research in 2008 reported that lifetime suicide attempts were seven times more common in people with PCOS than those without PCOS (Mänsson et al.). Later, in 2015, our own research also found that individuals with PCOS described suicide ideation and self-harm behaviours and perceived these behaviours as linked to their PCOS (Williams et al., 2015). And, so, these studies presented an initial picture of PCOS, NSSI and suicide ideation.

Further research

My colleagues Dr Dean Fido, Professor David Sheffield, and I decided to explore this further. In 2022, our research identified that a diagnosis of PCOS was associated with a greater frequency of recent suicidal ideation, NSSI and future suicidal intention in comparison to individuals without a PCOS diagnosis (Williams, Fido and Sheffield, 2022). Women with a PCOS diagnosis also reported greater scores on measures of rumination (not being able to get thoughts out of their head) and deviant emotion regulation strategy use (dealing with negative emotions in an unhealthy way).

As deliberate self-harm has been identified as a strong risk factor for future suicide, and suicide attempts are increasing in young women, a greater understanding is needed. Also needed is intervention for this demographic of young women with PCOS who may be at an increased risk of suicide and self-harm.

Looking back, Emma’s mother told me, she felt the health care providers did not know enough about PCOS and mental health. But she says they did the best that they could. This could reflect the general practitioner guidance for PCOS from the National Institute for Health and Care Excellence (NICE). NICE currently recommends that depression and anxiety should be screened for, ‘where appropriate’.

However, reflecting on Emma and her mother’s experience, and what we know from the research, the current NICE guidelines arguably need to more clearly and comprehensively address the very real concern of mental health conditions among people with PCOS.

So, it is promising that, in 2022, the Department of Health and Social Care released the Women’s Health Strategy for England. This strategy suggests that NICE will consider development of its PCOS guidelines over the next five years. My colleagues and I will continue to petition that this should be inclusive of comprehensive screening guidance for mental health in individuals with PCOS. Through continued research and discussion of PCOS and Mental Health, we hope that, in future, there will be more support and understanding for young women like Emma, who experienced PCOS and its impact on mental health.

Guidance and support

If you’re reading this and you, or someone you know, has experienced challenges with PCOS and mental health, or mental health in general, we’d implore you to reach out for support. We’ve included some guidance below to help you with that first step:

Finally, I’d like to thank Emma’s mother for reaching out to me and helping to raise awareness of PCOS and mental health impacts. If you’ve experienced the loss of a child, you can find some initial online support for when someone has died by suicide or you can call child bereavement on their confidential helpline here 0800 0288840.