Premenstrual dysphoric disorder (PMDD)

PMDD is a much more severe form of the more commonly known PMS (Premenstrual Syndrome) and is thought to affect 1 in 20 women.

This page provides information on PMDD and our work to improve access to healthcare for this health issue.

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The following information is based on the lived experiences and priorities expressed to us by our community. If you need medical/health advice, please contact a GP or medical professional. Read our medical disclaimer

What is Premenstrual Dysphoric disorder (PMDD)

PMDD is a hormone-based disorder that affects women, girls and people who menstruate (have periods) during their menstrual cycle
It is thought to affect 1 in 20 women in Wales
The symptoms of PMDD can have a significant impact on a person’s quality of life

PMDD is a much more severe form of the more commonly known PMS (Premenstrual Syndrome).

Symptoms of PMDD can vary but can include extreme psychological, emotional and physical symptoms, which arise during the luteal phase of the menstrual cycle (starting around day 15 of a typical 28-day cycle) and subside at the onset of the menstrual period.

Symptoms due to hormonal changes can be wide ranging and debilitating.

Severe mood swings can range from frequent crying to increased anger, irritability or sensitivity, leaving people feeling out of control and overwhelmed. People with PMDD can experience feelings of hopelessness, worthlessness and thoughts of suicide. Some people might experience anxiety or panic attacks, or experience low energy and brain fog that affects their daily activities.

Changes in appetite and sleep are also common, as are physical symptoms such as bloating, breast tenderness, body aches or bowel changes.

To diagnose PMDD, a healthcare professional will most likely ask patients to track their symptoms alongside the menstrual cycle for two consecutive months. There are no blood, saliva, or imaging tests for PMDD.

Treatment for PMDD is a very personal choice; there is no single option that works for everyone with PMDD, and it is always best to consult your healthcare professional for advice.

Options for treatment can include medicines such as antidepressants, or the contraceptives such as the pill, Mirena coil or hormone gels and patches. Lifestyles changes such as diet and exercise can also help with the symptoms of PMDD, and talking therapies such as Cognitive behavioural therapy (CBT) can be useful to help with mental health issues.

Other treatments include chemically-induced menopause and as a last resort, surgery to remove the ovaries and sometimes the uterus.

More information about PMDD symptoms and treatments can be found at on the NHS Wales website here.

If you feel that you may be about to harm yourself, call 999 for an ambulance or go straight to A&E or call the Samaritans (call free on 116 123)

What are we calling for?

Our overall aim is to improve awareness of PMDD in Wales and enable more joined-up care

On average it takes 12 years to get a diagnosis of PMDD, with many people going undiagnosed, or misdiagnosed. Some people with PMDD may find that their symptoms are normalised or dismissed by healthcare professionals who lack training on PMDD. PMDD patients will see, on average, 6 different healthcare professionals before getting their diagnosis.

In Wales, the lack of awareness of PMDD can often result in delays in diagnosis and difficulties accessing joined-up healthcare

In Wales, there are an estimated 87,000 women, girls, and people registered female at birth living with PMDD, though there are no statistics available to say how many of these people have been diagnosed and are receiving treatment.
34% of people living with PMDD will attempt suicide – in Wales, this equates to 29,000 people
49% of people living with PMDD have planned suicide – in Wales, this equates to 42,000 people
86% of people living with PMDD have thoughts of self-harm and suicide – in Wales, this equates to 75,000 people.
People living with PMDD are at a 50% increased risk of suicidality than those with major depressive disorder.
Education about PMDD in Welsh schools is lacking, with menstrual health topics such as PMDD not being classed as mandatory on the National Curriculum, which means that there are opportunities being missed to raise awareness of this condition in younger people, many of whom are at the start of their menstrual health journey, or may have loved ones with undiagnosed PMDD.
In Welsh healthcare, PMDD is not a mandatory module in undergraduate or postgraduate education. Many healthcare professionals receive fairly minimal training on menstrual health in general, which means that they may not be adequately trained or skilled in making the connection between hormones and mental health. FTWW members tell us that it is not uncommon for patients in Wales to not receive correct support, diagnosis or treatment for their condition.

We need to:

ensure that bilingual information about PMDD is available on every health board website and on the NHS Wales website.
encourage mandatory age-appropriate education about PMDD in the Relationships and Sexuality Education (RSE) curriculum for Wales (which includes menstrual health).
tackle the taboo, shame and stigma that surrounds menstrual health and mental health, which can be a barrier to seeking help, support, and healthcare.
encourage more investment in Wales in training and research on PMDD and other hormone-mediated mental health conditions.
drive improvements in healthcare policy and practice related to PMDD and other menstrual health conditions

Our champion: Laura T

“I campaign for FTWW because if I had been aware of PMDD earlier, I would have accessed treatment sooner, dramatically improving my quality of life. No one should have to suffer unnecessarily due to a lack of awareness or inadequate healthcare. I am determined to make things better for the next generation—not just for those with PMDD, but for all women and people registered female at birth.

I believe that everyone deserves access to appropriate, effective healthcare that addresses their needs. FTWW has been a vital source of support for me as a patient, helping me navigate my own health challenges. Beyond that, being part of FTWW has given me a sense of purpose. It has empowered me to be part of something larger than myself—an effort to drive meaningful change.

By raising awareness and advocating for fair treatment, I hope to ensure that others don’t face the same struggles I have done, and that they receive the healthcare they need and deserve.”

Read Laura's story

Our champion: Becci S

“In 2022, after being diagnosed with Premenstrual Dysphoric Disorder (PMDD), I began volunteering with FTWW. It became strikingly evident to me that women and individuals registered female at birth with PMDD were facing disjointed care delivery. Those with PMDD were being discharged from Community Mental Health Team (CMHT) services without the critical support they urgently require in crisis situations, as it is a gynaecological condition, not mental health.

I became passionate about driving systemic changes where I could for current PMDD patients, those facing the agonising average 12-year wait for correct diagnosis, and for future generations.

Within Wales, there is a notable absence of resources tailored to Welsh-speaking patients, contributing to unnecessary barriers in accessing advice and support, and there was a disparity in the information healthcare professionals were receiving, which meant patients often had to battle for safe treatments, even after receiving a diagnosis.

Everyone should be afforded safe and equitable healthcare regardless of how that looks for each person. Healthcare professionals should be provided the tools, knowledge, and support to do this, and patients have a role to play. FTWW has allowed me to be a part of these changes.”

Read Becci's story

What have we achieved?

Our campaign activity to improve the lives of those with PMDD is extensive. Some of our achievements are outlined below:

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We raise awareness through events, media, training and fundraising

FTWW PMDD Champions, Becci and Laura attended the All-Wales Menopause Conference where they shared their lived experiences of PMDD with a range of healthcare professionals in Wales
Becci and Laura spoke at Every Woman Festival about living with PMDD, and Laura and FTWW Engagement Officer, Dee Montague, co-delivered a “Planning For Your Medical Appointments” Workshop, which was later adapted for an online audience – view a recording of the webinar.
FTWW PMDD Champion Laura provided her patient story for Health Education and Improvement Wales’ PMS/PMDD e-learning webinar, which was co-produced with FTWW and PMDD Patient Champion LTJ.

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We take part in consultations, advisory boards and co-production of healthcare

FTWW PMDD Champion Becci was part of the Welsh Government Period Proud Stories, describing her PMDD journey.
We are working with both NHS Wales and Mind, the mental health charity, to improve online information about PMDD for patients in Wales
We made sure that evidence about PMDD was included in the Women’s Health Wales Coalition’s report to Welsh Government and that menstrual health conditions like PMDD feature strongly in the NHS Wales 10-year Women’s Health Plan.
We are working with the national clinical Gynaecology Implementation Network in Wales to improve care for patients with non-cancerous gynaecological conditions like PMDD

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We engage directly with policy makers and researchers

FTWW PMDD Champion Becci successfully petitioned the Welsh Government to include PMDD in post-graduate medical education. As an outcome, Cardiff University also developed an additional SSC module on PMDD for undergraduate medical students.
Becci contributes to the work of Wales’s National Centre for Mental Health research by being a research champion for PMDD
FTWW sits on the Welsh Government’s Period Dignity Roundtable, where addressing taboos and improving awareness of menstrual health and menstrual health conditions is a key part of the ‘A Period Proud Wales’ strategy.

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