PMDD: Woman who waited 18 years for diagnosis launches petition for compulsory education

• Becci Smart, 36, has launched a petition to make PMDD a compulsory part of education for medical students in Wales

A woman who waited 18 years to be diagnosed with an extreme hormonal condition is petitioning the Welsh Government to make it a compulsory part of education for medical students.

Premenstrual Dysphoric Disorder (PMDD), is a severe form of pre-menstrual syndrome (PMS) and is thought to affect more than one in 20 women.

Becci Smart, 36, was diagnosed with the condition in 2019 after experiencing symptoms since she started her period as a teenager.

"I felt suicidal, I didn't want to live, I was angry at everybody for no reason - there was no reason for this anger that I felt," Becci said of her symptoms, which would begin around two weeks before her period.

"Someone could look at me the wrong way and this red mist would descend."

Initially believing she had PMS, Becci says she noticed her friends seemed to be able to cope with their symptoms better than she did.

"I had opened up to one of my friends and said I was experiencing this extreme rage, I was feeling suicidal in the run-up to my periods," Becci said, adding that her friend told her it "wasn't normal."

What is PMDD?

According to the NHS, symptoms of PMDD can be similar to PMS, but more intense. They can include:

• physical symptoms such as cramps, headaches and joint and muscle pain

• behavioural symptoms such as binge eating and problems sleeping

• mental and emotional symptoms, such as feeling very anxious, angry, depressed or, in some cases, even suicidal

Becci says she received a list of diagnoses "as long as [her] arm", including being told she had bipolar disorder, post-natal depression, emotionally unstable personality disorder, generalised anxiety disorder, and complex post-traumatic stress disorder.

However, in early 2019, Becci was diagnosed with PMDD after a GP had asked her if there had been a period of time when she had not experienced these symptoms.

When Becci explained that she had been symptom-free when she was pregnant, she was given the diagnosis of PMDD.

"It felt kind of validating, but also I felt really, really, angry that it had taken me so long to be diagnosed with this," she said.

According to the Royal College of Obstetricians and Gynaecologists, it is estimated that 5-8% of women and people with periods in the UK have PMDD.

Becci says she is undergoing a chemical menopause, which is reversible, to manage her symptoms, having an injection every three months.

Now, she has launched a petition to the Welsh Government to make it compulsory for medical students in Wales to learn about PMDD.

The petition has gained over 500 signatures at the time of writing and, if it reaches 10,000 signatures, it will be debated in the Senedd.

Becci said: "We're seeing an average of 12 years before people are being correctly diagnosed [with PMDD] and in that time people are losing their lives."

Dr Jayne Forrester-Paton, a menopause, sexual health and reproduction specialist and GP, said that PMDD was only added to the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 2013 and to the International Classification of Diseases (ICD) as recently as 2022.

"You can't do a blood test for it, there's no scan you can do, so it's largely going on symptoms," she said.

"There will be, therefore, a range of healthcare professionals that have done their training at a time where it wasn't recognised and, therefore, won't have been on the curriculum."

Dr Forrester-Paton added that PMDD symptoms tend to occur during the luteal phase - from the point of ovulation until the start of the period. Usually, symptoms will alleviate once the period begins.

If the connection is not made between the symptoms and their cyclical nature, it can lead to women being misdiagnosed, she said.

"As a doctor who works in reproductive health, women's health in general is often undervalued, under-researched, and under-funded. I think we've got lots of studies that show women aren't taken seriously, bringing a range of concerns," Dr Forrester-Paton said.

"Anything that helps us raise awareness, improve funding, improve education in the field of women's health is needed."

Sioned Williams, MS for South Wales West, spoke in the Senedd earlier this year about the need to increase awareness of PMDD and has supported Becci's petition.

Speaking to ITV Wales, she said: "PMDD, though it is common, is just not being diagnosed so people do not know that that is what is affecting them.

"It's simple things like being able to track your period and match that with the symptoms you have that can lead to that lightbulb moment and, currently, that's not being done properly.

"Education, speaking in the Senedd, supporting campaigns like Becci's is the way we can raise awareness about this and hopefully get action from the government."

A Welsh Government spokesperson said: “Individual medical schools are responsible for setting their curriculum for undergraduate medical education. Women’s health issues are covered in GP training and through continuous professional development provided by Health Education and Improvement Wales.

“Health boards are responsible for delivering high-quality gynaecology services and it is vital they provide a robust and effective pathway, which includes early diagnosis, for the management of endometriosis in accordance with the National Institute for Health and Care Excellence (NICE) guidance.”

“Learning about menstrual well-being and conditions which can affect the reproductive system is mandatory within the new Curriculum for Wales. This includes learning about where to get further information and support. The Code therefore allows for conditions such as endometriosis to be considered by schools when designing their curriculum.

“It is important that learning about menstrual well-being and related conditions is not simply a ‘one-off lesson’, which is why the Code sets out that it should be taught over time as children grow.”

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