For a third of my life, I am not myself.
For seven to 14 days each month, I am so disoriented that I don’t see cars as I step out in front of them. I suffer excruciating pain and sensitivity – as if my skin is being peeled off, turned inside out, and stitched back on again. I hear a dog’s bark or a fan’s whirr and feel its serrated edge on my brain. Agoraphobia and social phobia make me terrified to leave my home; even a neighbour’s greeting sparks a firecracker chain of anxiety.
I have Premenstrual Dysphoric Disorder, or PMDD, which affects an estimated 5.5 percent of women of reproductive age. It causes a range of physical and psychological symptoms during the lead-up to a woman’s period, and is caused by the brain’s abnormal response to normal hormone fluctuations. It’s related to Premenstrual Syndrome (PMS) – but is far more debilitating.
“If somebody’s got PMS, they might cry at a soppy film,” says Dr Hannah Short, a GP and specialist in premenstrual disorders. “With PMDD, you’re looking at feelings of complete despair, hopelessness, severe depression, suicidal thoughts.”
A 2022 survey by the International Association for Premenstrual Disorders (IAPMD) revealed that 34 percent of women with PMDD have attempted suicide. Although I don’t count myself among that number, I feel that four years ago, my life stalled and never quite got going again.
My PMDD started aged 29: over six months, my regular PMS stretched from two days to five, to seven, to 11 – becoming more severe each time. There was no trigger; doctors still don’t fully understand why some women develop PMDD and some don’t.
It’s a half-life. Days shift through cold despair, numbness and the feeling that I might break something – or myself. The sofa – from which I stare at TV shows that I later don’t remember – starts to take my shape, to acquire a fine dust of popcorn and tortilla chip crumbs.
When the fog shifts, a new feeling takes hold: the fluttery, trapped-bird anxiety accompanying the sudden awareness of unanswered emails and unpaid bills. The two-and-a-bit weeks that follow pass in a state of suffocating productivity as I chase compressed deadlines, exercise off my binge-distended waistline and entertain a rotating cast of friends and family, who I’m afraid are starting to tire of my flakiness. All the while, next month’s episode gathers on the horizon, like a storm I must outrun.
And yet – being single, self-employed and childfree – I’m one of the lucky ones. For others, partners, colleagues and children get caught in the blast radius. Of 1,425 women surveyed by the IAPMD in 2022, 17 percent had lost a job due to PMDD; 57 percent had lost an intimate partner relationship, and 11 percent felt completely unable to parent during PMDD. “We had a case of a woman who took to her bed every two weeks, she could not operate at all; her mother had to take care of her children,” says Jackie Howe, chief executive of the National Association for Premenstrual Syndromes (NAPS).
And yet, barely anyone has heard of PMDD – including those who have it. A 2003 US study asserted that almost 90 percent of women living with PMDD were undiagnosed; the WHO only officially recognised PMDD in 2019. Bipolar disorder is a common misdiagnosis: in one of his blogs, the late gynaecology pioneer John Studd referred to the “tragic confusion” between the two disorders and described patients in his clinic who had been given ineffective, sometimes damaging mood-stabilising drugs.
Laura Murphy lived undiagnosed with PMDD for 17 years, and is now the director of education and awareness for the IAPMD. “Because of the patriarchy, PMS has become a bit of a punchline rather than something to be taken seriously. PMDD has been painted with the same brush,” she tells me.
Murphy and her team are currently working on social media campaigns and webinars for PMD Awareness Month in April. They’re also working with the producers of Emmerdale, who have created a PMDD storyline for the teenager Cathy Hope: the first time the condition will be covered in a British soap. “They’re taking it very, very seriously; they’ve been so lovely to work with,” she says. “But then I saw some of the articles about it and the comments were disgusting; really misogynistic and embarrassing.”
Women with PMDD avoid speaking up for fear of being sidelined at work. “People own up to the menopause more easily, because it’s towards the end of their working life,” says Howe. “People [with PMDD] say, ‘I’ve got a migraine’. They won’t actually say it because they feel vulnerable; they feel diminished.”
The front-line treatments for PMDD include oral contraceptives to suppress ovulation and antidepressants to treat the symptoms, but efficacy is variable. Having unsuccessfully tried both, I’m now trialling hormone replacement therapy (HRT), which may suppress ovulation without the negative effects that oral contraceptives can have on PMDD. If that doesn’t work, my remaining options include entering the menopause: either reversible chemical menopause administered through an injection that effectively shuts down the ovaries, or permanent menopause through surgical removal of the ovaries. Both options require add-back HRT to replace lost hormones.
Dr Short warns me that it’s not a miracle cure. “With surgical menopause, you’ve taken away part of the endocrine system, but the hormone sensitivity remains, so HRT can be difficult to navigate. But if you don’t replace your hormones properly, there are issues: osteoporosis, heart disease, dementia.”
“The thing to remember is that it is a real condition,” she continues. “It is recognised; we have guidelines in the NHS. And there is help available. Don’t give up hope, because things will get better and there will be something that will help.”
