Posted October 04th 2022
Have you or someone you know been diagnosed with PMDD? Or do you regularly experience severe premenstrual symptoms the week before your period?
We’ve launched a survey to study these conditions and to learn how we can manage them.
What is PMDD?
PMDD is a mood disorder which is estimated to affect around 5.5% of people who experience periods.
During the week before their period, known as the luteal phase, people with PMDD experience symptoms such as:
- Depression or severe low mood
- Decreased interest in usual activities (such as work, school, interacting with friends, and hobbies)
- Lethargy, becoming easily fatigued, or a lack of energy
- Hypersomnia or insomnia
These symptoms can be present for more than two consecutive cycles and start to subside within a few days after the onset of bleeding.
With an average of 450 periods in a lifetime, PMDD is a long-term diagnosis which can cause severe emotional, professional and personal harm to those who have it.
Some of the women we have spoken to in our focus groups reported that during that week they ‘just want to hide away’ and that ‘it impacts their ability to have a relationship and be a mother’. They’ve added, ‘that they can’t talk to their children or smile’, so spend the ‘rest of the month trying to fix it’.
By understanding this condition better, it will contribute to the development of targeted treatments to help manage of these symptoms.
Also, we can better identify early indicators to help doctors, parents, teachers and individuals to recognise PMDD symptoms, so people can get support and intervention earlier.
Severe Premenstrual Syndrome (PMS)
Our researchers, led by Professor Arianna di Florio, are also interested in hearing from women and AFAB people diagnosed with Severe Premenstrual Syndrome (PMS).
PMS is similar to PMDD, with individuals experiencing a collection of emotional/and or physical symptoms during the luteal/premenstrual phase, which stops at the onset of the period. However, PMS is more common, and individuals experience fewer and usually less severe symptoms than those with PMDD.
How long have we known about PMDD?
The diagnosis of PMDD was only officially recognised in 2013, and since there has been a growing rate of research into the topic.
This has led to many ideas about what causes PMDD and has started to guide the discussion of specialised treatments in the right direction.
However, there are still a lot of gaps to be filled to fit all the pieces together, which is where we come in.
Laura Murphy, who has lived experience with PMDD, explained: “As someone who lived with PMDD for 20 years – on a personal level – it is really exciting to see PMDD research on this scale taking place – especially in the UK where I am based.”
“PMDD has such a profound and often devastating impact on the lives of so many. As part of the world’s first PMDD Roundtable in 2021, hosted by the International Association of Premenstrual Disorders (IAPMD), patients came together with stakeholders to shape the future of patient-centred PMDD research, and I am sure it comes as no surprise that top of their priority list was the research of the ‘Biological Mechanisms of PMDD’.
“This data is collected en masse as part of the PreDDICT project and will hopefully lead to answers for those with PMDD, identifying risk factors and ultimately what all of us with PMDD want: answers, solutions, and hope!”
So what are we doing for PMDD?
As part of the Reproductive Mental Health Programme, we’re running PreDDICT (Premenstrual dysphoric disorder: indicators, causes and triggers) a project dedicated to understanding PMDD.
The aim of PreDDICT is to learn more about the genetic and environmental contributors to PMDD, with the long-term goal of improving the current approach to diagnosis, prevention, treatment and support for individuals experiencing PMDD.
Research is one of the first steps to changing this by advancing understanding of the disorder to later inspire better treatments and support.
We are looking for volunteers who are living with PMDD, or have previous experience with the disorder, to describe how impactful it is on their personal and work lives.
Professor di Florio explained, “We are thrilled to launch a new survey into the causes of Premenstrual Dysphoric Disorder (PMDD). This is still quite a newly recognised diagnosis and it is essential we raise awareness and reduce the stigma for women and AFAB people experiencing this condition.
“If you have experience of PMDD or perhaps what you have been told is severe PMS, please visit our online study and consider taking part. We need to hear from as many people as possible to be able to make a difference in future diagnosis, treatment and support.
“As well as opening our Preddict survey, we are looking forward to hosting a webinar about the myths and misconceptions around the condition.
It is exciting to be joined by members of the International Association of Premenstrual Disorders (IAPMD) which is a charity actively working to support and inform the public about PMDD.
“We will be taking questions from attendees and hope to take direction from them for future talks and resources. Please join us on 10 October and share the webinar with friends and colleagues to help us raise awareness.”
Laura Murphy, Director of Education and Awareness in the IAPMD, said “We are delighted to be partnering with NCMH on this webinar – working to expel common myths and misconceptions about PMDD (Premenstrual Dysphoric Disorder). Awareness of Premenstrual Disorders is growing rapidly – but with that comes inaccurate information from unreliable (often well-meaning!) sources.
“IAPMD is a not-for-profit organisation providing evidence-based education, support, advocacy, and resources for those affected by PMDD and Premenstrual Exacerbation of underlying disorders (PME). Of course – there are still lots we don’t know about PMDD – but taking some time to educate ourselves on what is known can save months (or even years) of suffering.
“Education and awareness are vital when it comes to living with a lesser-known condition. As patients – we often have to advocate for our own care, and so knowledge is power!”
Take part in our research
If you’re currently or have previously experienced PMDD or severe PMS symptoms, you could help us better understand the disorder by completing our online study.
The survey should take about 20-25 minutes to complete and the questions cover topics such as your experience with PMDD symptoms, about your general physical and mental health and questions about your experience of pregnancy (if relevant).
- NCMH | Register for our free PMDD webinar – 10 October 2022
- NCMH | Take part in this research
- NCMH leaflet | PMDD and extreme PMS
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