Premenstrual dysphoric disorder (PMDD)

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.

What have we achieved?

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

Premenstrual Dysphoric Disorder (PMDD) stories

Many women find it difficult to discuss health issues and seek support, even if these health issues are having a significant impact on their lives.

We're working with our community to develop tools and tips to help women to speak up, and provide guidance for people who would like to support their loved ones, friends, colleagues or patients who are living with health conditions.

Useful links and documents