Written evidence submitted by Dr Lynsay Matthews and Mhairi Campbell (University of the West of Scotland) and Julie Riddell (University of St Andrews) [RHW0034]
 

Introduction

We welcome the opportunity to respond to the UK Parliament’s Women and Equalities Committee inquiry, ‘Reproductive health conditions: girls and young women’.[1]

Premenstrual Dysphoric Disorder (PMDD) is under-researched and often overlooked in policy and practice, despite its debilitating impact. It is a severe hormone-based mood disorder affecting 1 in 20 women and individuals assigned female at birth, which can have a significant impact on daily life. Symptoms occur in the latter half (luteal phase) of the menstrual cycle, and include both psychological and physical effects.[2]

In the UK, an estimated 1.2 million people have PMDD. Of these, 72% will experience suicidal ideation, more than 50% will self-harm, and one-third will attempt suicide.[3] On average, diagnosis takes 12-20 years. It is therefore vital that high quality and accessible education and information is available for women and girls on the symptoms of the condition, and when and how to seek support. 

Dr Lynsay Matthews (University of the West of Scotland) and Ms Julie Riddell (University of St Andrews) led the development of the UK’s first PMDD research agenda,[4] co-developed key stakeholders including people living with PMDD. The agenda sets out five key priorities to meaningfully support people living with the condition:

1. Diagnosis and management of PMDD
2. Best approaches for psychological support
3. Suicide and self-harm prevention
4. Impact of PMDD on life
5. Support for hormonal ‘trigger’ events (such as puberty, perinatal period, postpartum)

Since the publication of the PMDD research agenda, 8 studies and reports have been published in response to these research priorities.[5] [6] [7] [8] [9] [10] [11] [12] This submission draws on that evidence to highlight challenges around diagnosis, treatment, and lived experience.

Summary of key points

• PMDD is under-recognised and under-researched, despite affecting 1 in 20 women and individuals assigned female at birth.
• Delays in diagnosis, lack of awareness and dismissive healthcare experiences remain major barriers.
• PMDD is closely linked to other reproductive stages, such as the perinatal period and perimenopause, and with other conditions like eating disorders. These connections should be taken into account as part of a holistic approach to women’s health.
• People living with PMDD, and healthcare professionals, require high quality education on the condition to ensure timely support and effective care.
• People with PMDD must be able to access timely welfare and social security support.

We recommend:

• Providing effective, accessible education for people living with PMDD to raise awareness of the condition, and when and how to seek care and support.
• Including PMDD within health professional curricula e.g., medical and nursing students.
• Raising awareness amongst professionals who support girls and young women, e.g., high schools, further and higher education facilities, charitable organisations e.g., substance use, violence against women and girls, and others.
• Multidisciplinary teams to provide effective care for girls and women with PMDD — a complex disorder crossing psychiatry, gynaecology, clinical psychology, general practice, sexual and reproductive health, and eating disorders.
• Providing mandatory training across the healthcare sector to raise awareness of PMDD among healthcare professionals, to support timely diagnosis, support and information provision.
• Embed simple screening questions about menstrual cycles into routine healthcare and mental health assessments to help identify symptoms of PMDD.
• Integrating the menstrual cycle as a core element of mental health assessments, ensuring that reproductive conditions like PMDD are considered in treatment and care plans.
• Ensuring the welfare system recognises the impact that PMDD can have on daily life, and subsequently, ability to work, study and maintain financial security. This should include greater awareness and training for Department for Work and Pensions staff on specific conditions like PMDD, ensuring assessment processes for welfare assessment consider fluctuating conditions, and embedding lived experience into welfare reform to reduce barriers to accessing support, stigma and trauma during assessments.
• Investing in further research to address and identify policy solutions to address the impact of PMDD on daily life. These should be informed by the UK’s first PMDD research agenda to respond to pressing concerns.

Impact of PMDD on daily life

Research highlights that PMDD has a profound impact on daily life. Research participants described living with a “dual personality”, reporting extreme mood changes, debilitating depression, irritability, anxiety and suicidality during the luteal phase of the menstrual cycle. As one participant described:

“And usually, it would be that at 11 o’clock in the morning, everything’s fine and at 11:05 it’s like somebody has turned the lights off, like somebody, uh, flick the switch {…} and all of my sense of every being able to be happy again, is drained.”[13]

Symptoms significantly impact on everyday life, leading to barriers and challenges relating to education, employment, relationships, parenting and other risk-related behaviours such as impulsivity or substance use. Outside of the luteal phase, many report feeling “normal”, “controlled”, “stable” or “optimistic”. However, some experience ongoing symptoms or anticipate recurrence of symptoms.

Issues with diagnosis and management of PMDD

Despite its prevalence, PMDD remains poorly understood, both in general society and the medical community. Data from the International Association of Premenstrual Disorders (IAPMD) suggests that up to 90% of people with PMDD are being misdiagnosed.[14] Our research findings show that people living with PMDD persistently face challenges in accessing accurate diagnosis of the condition, with many experiencing dismissive interactions with health professionals, misdiagnoses, and inappropriate treatment. The most common misdiagnoses for PMDD are borderline personality disorder, bipolar disorder, major depressive disorder and generalised anxiety disorder. This leads to inappropriate and ineffective treatments, further impacting on quality of life.

As part of stakeholder consultations for the PMDD research agenda, health professionals highlighted that simply “asking the right question” can make a substantial difference, helping to identify patterns.

-          “How often does this happen?”

-          “Did this happen last month?”

-          “When is your next period due?”

Research stakeholders highlighted that these simple screening questions helped paramedics and A&E staff nurses to identify patterns when supporting women who had self-harmed.4

Simple screening questions related to the menstrual cycle should be factored into healthcare assessments, including mental health services, as standard practice to support timely identification and diagnosis of issues such as PMDD. We have delivered NHS training across several health boards for health professionals of different specialities (psychiatry, clinical psychology, mental health nursing, gynaecology, general practice and eating disorder clinics)., This was in response to our research highlighting a lack of knowledge and awareness of PMDD amongst health professionals, and also based on their feedback that they that they lack these professional development opportunities. Their post-training feedback has been positive. Examples include:

“As you were talking, I was picturing several patients on my caseload who likely have PMDD. This [training] is a game changer and we can discuss a treatment plan now.”

“I’m going to start asking the ‘right questions’, since to be honest, I rarely ask about their menstrual cycle.”

“I’m making links now … I see a lot of women with premenstrual exacerbation of mood symptoms linked to their ADHD, and now clearly [post-training] there is a link there.”

Intersection with other conditions

Further awareness is needed on the intersections between PMDD and other conditions.

A recent qualitative study of 13 people with PMDD living in the UK found disordered eating behaviours (including binge eating, bulimia nervosa and anorexia nervosa) fluctuated during different menstrual phases, leading to psychological and physical health impacts.7

Yet, participants described key barriers to accessing care and support including dismissive attitudes from health professionals, and a lack of PMDD knowledge among health professionals. The findings highlight a need for PMDD-specific training for health professionals, specialised eating disorder services, increased information dissemination and flexible management options.

Interim analyses of our ongoing systematic review of PMDD and disordered eating has identified that people with PMDD are nine times more likely to be diagnosed with an eating disorder than those without PMDD, yet eating disorder services do not routinely screen for PMDD, hence missing a key factor in patient care.

Suicide and self-harm prevention

PMDD is a severe mental disorder. More than half will self-harm and one third will attempt suicide. People with PMDD have died from suicide. Our research, in collaboration with the UK’s Suicidal Behaviour Research Lab (SBRL), identified that some of the mechanisms for suicidality in PMDD are different than those of the general population. Examples include its core link with the luteal phase of the menstrual cycle, hormonal ‘trigger’ events (such as menarche, starting/stopping hormonal treatments, miscarriage etc), cumulative cyclical exhaustion and impulsivity. Our draft PMDD suicide prevention model9 has been welcomed by health professionals and policy makers, and is in the final stages for dissemination. This will be an important resource for not only health professionals but others who support those who menstruate, such as high school educators, further and higher education facilities, health and social care organisations and charities providing support for substance use, gender based violence etc.

Holistic care and support: accessing the welfare system

A whole-systems approach is needed to meaningfully support people with PMDD. As well as timely access to physical and mental healthcare services, it must include access to the welfare system when required.

Findings from recent UK research show that people with PMDD face significant challenges navigating the welfare system in the UK.5, 6, 10 Looking specifically at Personal Independence Payment (PIP) (and Adult Disability Payment in Scotland) it highlights barriers to accessing welfare benefits.

Research participants reported difficulty evidencing the fluctuating nature of PMDD, as well as experiences of stigma and misunderstanding from case workers and assessors who were unfamiliar with the condition. This led to distressing experiences during welfare benefit assessments as research participants described feelings of dismissal and symptoms being minimised by professionals.

It is therefore essential that welfare system reform responds to such challenges through mandatory, trauma-informed training and resources on PMDD, and reformed eligibility criteria to account for fluctuating, invisible and mental health conditions. Without these changes, there is a risk of worsening existing inequalities and further excluding those already facing barriers to assessment and support.

Further information on the challenges faced by people with PMDD in accessing the welfare system are detailed in our response to the UK Parliament’s Work and Pensions Committee Inquiry, ‘Get Britain Working: Pathways to Work’.[15]

The research also informed the final report of the Scottish Government’s Independent Review of Adult Disability Payment (ADP). Mhairi Campbell (University of the West of Scotland) contributed to the review as an independent member of its Advisory Group.

September 2025