This unknown condition could be fatal to women: What is PMDD?

PMS. Those three letters are widely known but do we really know what they stand for and what the consequences of it are?

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On a purely literal level, PMS means Pre-Menstrual Syndrome. The NHS describes it as:

the symptoms women can experience in the weeks before their period

It goes without saying that you do not have to be a woman to have periods. No matter your gender, if you have periods then you may suffer or have suffered from PMS. Its symptoms are varied and include ‘mood swings, tiredness, headaches, bloating’ and ‘breast tenderness.’

Though these symptoms have a real and deep impact on people’s lives, they are nothing compared to the impact PMDD can have. So what is PMDD and how can it be fatal to people’s lives?

What is PMDD?

PMDD stands for: Premenstrual dysphoric disorder. If you’ve never heard of it, that's normal. According to the NHS, only a ‘small number’ of people suffer from it and with that comes little information or exposure.

But this disorder needs to be known as it has a worrying impact on people and women’s lives. In their introduction to PMDD, the NHS writes:

Symptoms of PMDD are similar to PMS but are much more intense and can have a much greater negative impact on your daily activities and quality of life.

What they mean by that is that this disorder can literally kill people. Some of its symptoms include:

behavioural symptoms such as binge eating and problems sleeping

And,

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

The causes of PMDD are ‘unknown’ but the NHS says that ‘it has been linked to sensitivity to changes in hormones or certain genetic variations you can inherit from your parents.’

Living with PMDD

On 16 October The Guardian published an article in which they give a voice to Emily, a woman who lived with PMDD.

Through Emily’s testimony we learn that the symptoms of the disorder are incredibly serious. The article opens like this:

By the time Emily got her diagnosis, she was under 24-hour supervision by her mum, suffering with anorexia and routinely self-harming. Her suicide attempts had numbered “too many to count”.

Emily’s story started when she got her first period at 13. She suffered from PMDD symptoms, unaware, until she was 26, when her plight was finally given a name. About that time, Emily says:

I would be living my life, feeling motivated and able to concentrate, for five or six days (...) Then I would start to descend into being really tired and anxious. I wouldn’t be able to concentrate and would feel really frustrated with myself.

My self-worth would plummet ... When I got my diagnosis, we were able to identify patterns when I was engaging in self-harm or suicidal behaviour – and it was always a few days before my period.

Emily’s words aren’t all that surprising when you know that a study led by the International Association for Premenstrual Disorders (IAPMD) shows that 34% of people affected by PMDD have tried to kill themselves.

Emily’s symptoms were so severe that she had to spend a year in a mental institution being supervised while she waited for a solution to be accessible to her.

The dreadful consequences of PMDD

Because Emily’s symptoms were so intense, the best way for her to make it all stop was to get a hysterectomy. Before that she had tried several hormone treatments but to no avail.

This decision was not easy to make for Emily who tells The Guardian that she ‘always wanted children.’ She shares:

When I made the decision and came to terms with it, I cried for a week solid. I was grieving for the life I had envisaged for myself and was never going to have.

On the other hand, it didn’t feel like a choice because I didn’t have a life. I took the chance. What was there to lose?

Though Emily’s experience with PMDD is intense, it feels necessary to nuance it. Laura Murphy from IAPMD explains that PMDD is a spectrum.

For some people, things are impacted but manageable, and that goes all the way up to people who are sectioned every month for their safety.

However, Murphy stresses the importance for this disorder to be more widely known as it could save lives. At the moment it takes a minimum of 12 years for someone to be diagnosed with PMDD. A shorter diagnosis time would prevent many suicides.

Another factor plays against the diagnosis of PMDD: ‘in so many areas of women’s health, medical knowledge is patchy.’The Guardian spoke to Dr Thomas Reilly, a psychiatrist and clinical research training fellow at the University of Oxford who says:

For PMDD, it is a bit of luck if GPs know about it (…) Busy GPs are unlikely to be reading research directly, and there are advances all the time, which are impossible to keep up with.

People suffering from PMDD often go through years of being misdiagnosed with mental health issues when really their menstrual cycles are to blame. Awareness for PMDD still needs to go a long way but in 2019, the disorder was added to ‘a World Health Organization diagnostic manual, validating the disorder as a legitimate diagnosis’.