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”. She had seen doctors, was working with a therapist and “doing everything everyone said, but the emotions were exhausting and relentless and stayed there”.
Then she would get her period, and everything would change. “I couldn’t understand how I was in complete distress, and then OK a few days later,” she says.
In 2016, Emily, now 33, was diagnosed with premenstrual dysphoric disorder (PMDD), a little-known hormone-based condition that affects a staggering number of women: about one in 20 of those who have periods suffer with it worldwide. Symptoms include depression, anxiety and irritability, as well as reduced motivation, focus and libido. It can also be life-threatening: 34% of women with PMDD have attempted suicide, according to the International Association for Premenstrual Disorders (IAPMD).
Emily’s symptoms began when she started her period aged 13. It would take until she was 26 to get a diagnosis. This is not uncommon – the average wait for a diagnosis is 12 years, according to the IAPMD. Emily spent three years on hormone treatments such as triptorelin, goserelin, progesterone and oestrogen, until 2019, when she was offered a hysterectomy as a last resort.
“I had always wanted children,” she says. “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?”
In very simple terms, PMDD is a “glitch”, says Laura Murphy, who works for the IAPMD, and has also had PMDD (she waited 17 years before she received her diagnosis). “A malfunction in the brain causes an abnormal negative severe reaction to those fluctuating hormones,” she says.
PMDD symptoms occur during the second, or luteal, stage of the menstrual cycle – which begins at around day 15 in a 28-day cycle, between ovulation and the start of the period. “I would be living my life, feeling motivated and able to concentrate, for five or six days,” says Emily. “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.” It took more than a year on a waiting list for Emily to get her hysterectomy – which she spent in a psychiatric hospital, as she and her doctors agreed it “would be the safest thing to do”.
The severity of Emily’s experience is rare. “It is a spectrum disorder,” says Murphy. “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.” Still, PMDD sufferers are 10 times more likely to have made a suicide attempt at some time in their lives than the general population. “Quicker diagnosis means suicide prevention and better quality of life,” says Murphy. “Access to treatment and care means people don’t feel so dark each month.”
About 60-70% of women with PMDD respond to SSRI antidepressants, according to the National Institute of Health. After she started taking the SSRI sertraline in January, Laura Becker, 26, from Wisconsin, saw significant improvements in her PMDD symptoms. “My emotional dysregulation has significantly decreased, and I have been able to work and function relatively normally throughout the entire cycle,” she says. “I still have symptoms but they are not as extreme or overwhelming as before.” Other treatments include combined oral contraceptives and hormone treatments such as gonadotropin-releasing hormone agonists, which suppress oestrogen production and stop periods, causing a process called chemical menopause. However, these can cause symptoms such as hot flushes, reduced sex drive and mood changes, which may need to be subsequently treated with HRT.
Most PMDD patients experience many years of mental health misdiagnoses before they get to treatment options. As in so many areas of women’s health, medical knowledge is patchy. “For PMDD, it is a bit of luck if GPs know about it,” says Dr Thomas Reilly, a psychiatrist and clinical research training fellow at the University of Oxford who is researching the relationship between hormones and mental health. “Busy GPs are unlikely to be reading research directly, and there are advances all the time, which are impossible to keep up with.” Even in psychiatry, he says, there is no specific teaching about PMDD, and because of the crossover between mental and physical health, it can fall into the gap between psychiatry and gynaecology. Often, women with PMDD have other mental health problems as well, so joint working between specialities is really important, says Reilly.
Jasmine Gibson is a business owner in Baltimore, US. Her therapist thought her symptoms were bipolar disorder. Then, she found some articles about PMDD online. Reading them “was like a lightbulb moment,” she says. “My psychiatrist didn’t know about PMDD, and she wasn’t sure about diagnosing me with it. But when I went to see a gynaecologist, and took my records of my symptoms, she got it straight away.”
Three years before her diagnosis, Emily had asked her psychiatrist if her symptoms could be hormone-related. “I remember her saying, ‘Wouldn’t it be nice if it were just that?’ I took that as gospel and never mentioned it again,” she says. “I don’t blame that particular psychiatrist, but it just shows the lack of education and awareness around PMDD.”
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Reilly says: “A lot of the time I hear from patients that they recognise the hormones, and they then have to convince the doctor or clinician. Doctors can be dismissive.” Anecdotally, he says, a lot of PMDD researchers have experienced it themselves too – “It comes down to women who have experienced PMDD to drive the research.”
Maddy, 25, a software engineer from Australia, was diagnosed with PMDD a year ago, after 14 years of symptoms. She knew her symptoms worsened around her period. “But I was completely unaware that it was abnormal.” Maddy was diagnosed with PMDD by chance, after seeing a psychiatrist about her ADHD medication. “I just got lucky that I spoke to someone who knew what it was.”
Gibson also has ADHD and, like Maddy, finds her symptoms become less manageable during PMDD weeks. “I feel truly that I have ADHD, but I do wonder if it is PMDD-induced,” says Gibson. “It is a difficult thing to ask yourself, ‘At what point am I actually operating at my best?’”
According to Reilly, people with PMDD are often neurodivergent. Becker is on the autism spectrum and suffers with depression, anxiety and complex post-traumatic stress disorder .
She becomes “depressed, hopeless and immersed in flashbacks for about five to seven days every month” before her period begins. “It is a different state of consciousness,” she says. “I try to sleep as much as possible … it feels dangerous to be awake.” She doesn’t “feel comfortable attending work or interacting with other people because I am constantly tearful, lack energy, and don’t want to ruin anything for my career. I’ve missed a lot of opportunities over the years due to this.”
Gibson has also struggled in her work life. “I would be trying to be productive and just hit a wall. I would look at deadlines and literally watch them pass, and be physically unable to do the work,” she says.
Being open about her disorder has been helpful. “A colleague reached out and said she had it and we talk about what medication or tips we have tried.” She sends people she has dated articles about PMDD, and gives people around her “a heads-up when I feel it starting”.
In 2019, PMDD was added to a World Health Organization diagnostic manual, validating the disorder as a legitimate diagnosis and starting a rise in awareness. It is also gaining cultural awareness. The reality star Vicky Pattison recently revealed she had been suffering with the “unrelenting and debilitating” illness for five years and has finally sought private treatment. A storyline on Emmerdale has also been praised by sufferers.
Dr Audrey Henderson is an evolutionary psychologist and trainee clinical psychologist at Edinburgh University who is researching how thought processes influence the symptoms of those with PMDD. She thinks reframing the condition can help. “If you perceive it as a biological condition that you will inevitably experience for the rest of your menstruating life, that could be really scary. But, if you see it as natural – albeit strong – fluctuations in feelings throughout the month where you might have to do things differently as a result, that’s much more helpful.”
Emily now works in NHS lived experience services and at the Royal College of Psychiatrists, offering insight on what it is like to receive care. After her surgery, she initially still had urges to self-harm but could avoid acting on them and before long her mental health improved significantly. Her journey, she says, is an example of how treatment – whatever that looks like in an individual case – can change everything. “When I was in the depths of PMDD, I never had hope for the future,” she says. “Now, I am living a life that I never thought possible.”
In the UK and Ireland, Samaritans can be contacted on 116 123 or email [email protected] or [email protected]. In the US, the National Suicide Prevention Lifeline is at 800-273-8255 or chat for support. You can also text HOME to 741741 to connect with a crisis text line counsellor. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at www.befrienders.org
