The first dedicated research conference on Premenstrual Dysphoric Disorder (PMDD) in the UK has taken place, with researchers, healthcare professionals, policymakers and people with lived experience of PMDD brought together. 

Hosted at UWS's Paisley campus on Friday 28 August, the conference showcased the PMDD research currently taking place across the UK and internationally, while connecting researchers with clinicians, policymakers and the people whose lives are directly affected by the life-altering condition.

PMDD is a severe, hormone-based mood disorder, causing 1 in 3 affected to attempt suicide. It affects 1 million women and people who menstruate, with 1 in 2 self-harming and most having suicidal thoughts. The condition causes debilitating symptoms in the latter half of the menstrual cycle, impacting all aspects of life, with some people requiring support for daily living.

Despite this, significant gaps remain in understanding, diagnosing and treating the condition.

Opening the conference, Aaron Kinghorn of IAPMD UK – a charity dedicated to advancing PMDD research in the UK – highlighted the importance of evidence-led information and support for people living with PMDD, as well as their partners and loved ones. Aaron, whose wife suffered with the condition, is a founding trustee of IAPMD UK and sits on the Board of Directors of IAPMD Global.

A key focus of the day was the pioneering research into PMDD taking place at UWS. Dr Lynsay Matthews and her team developed the UK’s first-ever PMDD research agenda. Created with stakeholder input, the agenda identifies five priority areas for PMDD research in the UK: diagnosis and management; psychological support; suicide and self-harm prevention; the impact of PMDD on life; and hormonal trigger events. The conference demonstrated the lifechanging work that is now underway across these areas, including the recent launch of a new tool to support the identification and prevention of suicide caused by the condition. 

Researchers presented findings and emerging research on the physical and mental health conditions associated with PMDD, the impact of the disorder on romantic relationships and parenting, reproductive decision-making, experiences of ethnic minority communities, PMDD during perimenopause, suicide and self-harm, psychological interventions and digital mental health tools.

The programme also examined the often-overlooked impact of PMDD on work, academia, social security and equality, including research into workplace experiences, career progression, the welfare benefits system and the effectiveness of legal protections under the Equality Act 2010.

A defining feature of the conference was its emphasis on lived experience as an essential part of the day itself, and wider PMDD research and change.

Speakers explored how the experiences of people living with PMDD - and their partners and families - can help shape research questions, improve healthcare and inform policy. Sessions examined the emotional, social and relational consequences of PMDD, alongside the barriers many people face in receiving recognition, diagnosis and appropriate support.

There was a keynote presentation from Dr Ellen Golightly and Dr Katie Marwick of Chalmers Sexual Health Centre, Edinburgh, on multidisciplinary approaches to managing premenstrual disorders. Drawing on the NHS Lothian premenstrual disorder clinic, they shared learnings from bringing gynaecology and psychiatry together to support diagnosis, formulation, risk assessment and treatment. The closing session featured Annika Waheed, a women’s health advocate and a PMDD patient expert, reflecting on her experiences of suffering with the condition. 

Discussing the conference, Dr Lynsay Matthews, Lecturer in Public Health at UWS and Trustee of IAPMD UK, said: “People living with PMDD have had their experiences dismissed, misunderstood or left without the support they desperately need. To see researchers, clinicians, policymakers, advocates and people with lived experience come together, united by a determination to change that, was incredibly powerful. The conference was an incredibly emotional and proud moment for everyone involved.

“The conference marked an important moment for PMDD research in the UK. A growing body of researchers are tackling this devastating condition from multiple perspectives, but meaningful change depends on collaboration between research, clinical practice, policy and lived experience, which was at the heart of this event. We are gaining momentum, defined by collaboration, compassion and a shared determination to turn evidence into change, ensuring people living with PMDD receive the recognition, understanding and support they deserve.”

People living with PMDD have had their experiences dismissed, misunderstood or left without the support they desperately need. To see researchers, clinicians, policymakers, advocates and people with lived experience come together, united by a determination to change that, was incredibly powerful.

Dr Lynsay Matthews, UWS

Professor James Miller, Principal and Vice-Chancellor of the University of the West of Scotland, said: “We are incredibly proud to have hosted this landmark event at UWS. It embodies our ambition to be a force for good within our communities and strengthens our commitment to advancing women’s health. It also demonstrates not only what universities are good at, but what they are good for: bringing people and expertise together to tackle the issues that matter most to society and to create meaningful change.”

This event demonstrates not only what universities are good at, but what they are good for: bringing people and expertise together to tackle the issues that matter most to society and to create meaningful change.

Professor James Miller, Principal and Vice-Chancellor of UWS
 
Lynsay’s work and the PMDD conference align with the United Nations Sustainable Development Goals, particularly Goal 3: Good Health and Wellbeing and Goal 10: Reduced Inequalities.