by Julie Riddell & Seonaid Cleare
I’d just been to the toilet and my period had started, too embarrassed to ask for a sanitary pad, I made a makeshift pad out of some tissue and headed back to my bed. Sitting down, my ears picked out a nurse’s voice, I recognised her voice, she’d been the one checking on me.
‘Bed 3? Just attention seeking. Nothing wrong with her but we’ve got to wait for Psych to come down anyway and that’s going to be a few hours’.
Bed 3? That was me, I was the attention seeker. I decided it was time to leave, I clearly didn’t deserve to be there, the bed was needed for someone more in need, they didn’t try to stop me. I didn’t tell anyone what had happened. It was the third or fourth time I’d taken an overdose and all I knew was that I didn’t want to deal with my brain any more. But that was yesterday, before I was admitted, now I felt confused, I didn’t really want to die, even the nurse could see that. Clearly, I was just seeking attention, they must know what they are talking about.
But she wasn’t attention seeking, and the key to understanding this is in the first sentence.
Premenstrual Dysphoric Disorder (PMDD) is a severe hormone-based mood disorder affecting 1 in 20 people who menstruate. Symptoms occur during the luteal phase – between ovulation and the first day of the period. During the luteal phase people with PMDD experience somatic, cognitive and physical symptoms such as brain fog, insomnia and sensitivity to sounds, feelings of isolation but also wanting to withdraw. People with PMDD also experience debilitating psychological symptoms including overwhelming depression, anxiety, rage, hopelessness and despair. PMDD is characterised by symptoms lifting either at the start or within the first few days of menstruation (bleeding). This creates a cyclical pattern, every month, likely for decades. People living with PMDD are at increased risk of suicidal thoughts and behaviour, 72% experience suicidal thoughts and one in three will attempt suicide. Research also suggests that the weeks before menses are correlated with increased risk for hospitalisation related to suicidal behaviour and accidents. Despite this, hormones and the menstrual cycle are rarely considered when someone experiences a suicidal crisis.
In consultation with people living with PMDD, support providers, families, healthcare professionals and researchers we developed the UK’s first Research Agenda for PMDD to identify key research priorities for this overlooked group.
Suicide prevention was identified as a critical priority. Participants reflected on the impact that the fluctuating and repetitive nature of the condition had on their lives. Those who had sought help discussed barriers to accessing the right support, including feelings of being dismissed by medical professionals and others in their lives. Many living with PMDD had tried multiple treatments for mental health issues, but the treatments were not successful without support for the hormonal aspect of the disorder.
This led some to delay seeking further treatment or, for some, led to feeling that they were just ‘unable to cope’ with ‘normal’ symptoms of menstruation. Those living with PMDD reflected on the need for more education on PMDD. Participants emphasised that improving awareness can support early identification of issues, provide family and friends of those living with PMDD tools and language to help support them, and increase awareness in health professionals. In turn, this may lead to earlier diagnosis and treatment BEFORE the person reaches crisis point. Health professionals similarly reflected that they may not be asking the right questions to facilitate diagnosis and how this, in turn, can play a role in mislabelling and delays in accessing appropriate support. For example, increasing awareness of the importance of asking questions which explore patterns of symptoms could be particularly helpful during mental health appointments.
Why this is so important
At some point in our lives we are likely to work with people who menstruate and it’s important that we have an understanding of how this can affect their health, be that psychologically or physically. Researchers may want to pay particular attention to the impact of hormones on their work at specific timepoints, such as puberty, perimenopause and menopause and other hormonal events such as (post) pregnancy.
When we think about suicide prevention, one way we could do this is to work towards an understanding of how hormones may play a role in the effectiveness of different psychological supports and treatments and we can look towards other fluctuating mental health conditions to guide us in these studies. For example, seasonal affective disorder (SAD), a complex type of major depressive disorder depressive disorder, distinguishable from other depressive disorders by its recurrent seasonal pattern. SAD would be frequently misdiagnosed without assessment of this crucial, cyclical pattern.
It’s also important that we think critically about PMDD studies that include those on hormone treatment. Research into PMDD and symptom management often excludes those who use hormonal treatment, which for many living with PMDD is often the first form of treatment offered. Therefore, if we exclude people receiving hormonal treatments from studies to understand psychological interventions we are clearly missing an important group of people.
Asking the right questions
Sometimes the simple solutions can make the biggest changes. Health professionals (and those living with PMDD) in our consultation suggested it can be as simple as asking the right question that can help to lead to a diagnosis. Instead of asking how long have you felt this way, a simple question might be how often? This may help identify a pattern which can start the journey to understanding. By making this simple adjustment we can shift burden of self-advocacy away from people who menstruate.
Although traditional measures of mood can be helpful, the fluctuating nature of the disorder, both within the month and across months, may limit the utility of traditional psychometric scales. They may not capture the true extent of symptoms, meaning participants in need of support are missed because such scales make assessments based on set timeframes. As a result, people living with PMDD may not meet traditional cut-off thresholds, which can lead to misdiagnosis and in adequate treatment.
In conclusion, our consultation highlighted the critical need for further research into this severe hormone-based mood disorder and a simple step is changing how we assess recent mood in people who menstruate. Such a simple change in measurement could significantly improve the quality of life for those living with PMDD by facilitating timely diagnosis, appropriate interventions, reduced risk of suicide, and overall better understanding and support from both healthcare professionals and society.
Suicidal Behaviour Research Laboratory 