Laura Daly was six the first time she suspected something was wrong with her mum, Wendy. Furious at locking herself out of the house, Wendy reversed and rammed the car into their garage door once, twice, then three times, as Laura cowered silently in the back, her head flopping forwards with each smash. On the seventh smash, the garage door contorted just enough for Laura to squeeze under, get into the house and fetch the keys.
“It was like I was watching myself,” Wendy Barker, 56, says of this moment now. “Nothing would’ve stopped me.”
Inside the Hampshire home, the rage subsided and Barker wept. Until that moment she had generally hidden the worst of this kind of thing from her two children. “The symptoms slipped out this time,” she says. “I’d usually hold them in till the kids were in bed. If my husband came home slightly late, plates and knives would fly,” she says. “I often say to him now, ‘Why did you stay?’ He always says, ‘Because this wasn’t you. But I knew you were in there. We just needed to get you the right help.’” That would become a two-decade battle, ending in a diagnosis almost no doctor had heard of.
Still, the guilt lingers. “I have extreme regret at my two children witnessing things they shouldn’t have,” Barker says. At the time no one could explain her behaviour. “I was a coiled spring. Until I had that outburst of anger, screaming and tears, it wouldn’t subside, no matter how much meditation someone tells you to do. And as soon as I had my period, it started building all over again.
“I kept saying to my doctor, it’s not just depression, something else is doing this to me.” Like clockwork, for a week a month, her symptoms vanished, only to reappear for the following three weeks. Initially, doctors thought it might be bipolar disorder – “I was Jekyll and Hyde,” Barker says – but the exact timing of symptoms, which she tracked, suggested otherwise.
One day, when at home and experiencing symptoms, Barker saw an episode of the BBC daytime show Kilroy on postnatal depression with Dr Katharina Dalton on the panel. Barker tracked down Dalton, who coined the term premenstrual syndrome (PMS). Dalton said that Barker had postnatal depression. “But she said, ‘I think you also have something else,’” Barker says. “She told me it was premenstrual dysphoric disorder.”
That three-word diagnosis would change Barker’s life.
Premenstrual dysphoric disorder (PMDD) only officially became a diagnosable disorder in 2013 when it was added to the Diagnostic and Statistical Manual of Mental Disorders. In 2019, it was recognised by the World Health Organization, giving the condition credibility and weight – significant for those who felt they hadn’t been given due regard previously by medical professionals. In 2000, Barker became one of Britain’s first cohort of women to be diagnosed. Symptoms include severe mood swings, irritability, extreme depression and anxiety, fatigue and overwhelm. Current research indicates that PMDD affects up to one in 20 women of reproductive age, though just 1.6% have a formal diagnosis. A third of those diagnosed have attempted suicide.
Many people – even doctors – have never heard of it, meaning those with PMDD are often misdiagnosed and untreated. Even less is understood about how such a potentially debilitating disorder can affect both mothers and their children, though in recent months the UK’s first charity solely dedicated to supporting PMDD patients and their families has been set up.
Daly, now 37, remembers overhearing “big, fiery” arguments between her parents before her mum got treatment. “I’d feel sad because she’d be crying – I hated seeing her so upset,” Daly says. “Mum was hard work at points. I’d sometimes overhear her shouting at Dad and think, this is unfair.”
“I’d say nasty things, and felt unable to stop, then afterwards think: that was awful,” Barker says. “Then the tears and depression came, I’d spend a week apologising – then it’d start all over.” Her arms are a host of large, colourful tattoos. They hide self‑harm scars from when things got really bad. She has also made them a testament to her resilience. Above one, Maya Angelou’s words are inked: And still I rise.
A breakthrough for Barker came when consultant gynaecologist Prof John Studd trialled oestrogen implants with her. “It was the only thing that worked – my symptoms disappeared,” Barker says. Yet the NHS refused to fund the treatment because PMDD was classed as a syndrome – a group of symptoms often without a fully understood cause – rather than a disease. Barker wrote to doctors, MPs and anyone who could help her affordably obtain this life-changing treatment as she moved from Hampshire to Edinburgh, where she now lives. “I ended up paying £600 every six months to travel to London and get a new implant fitted at my own expense,” she says. It was an essential for Barker; life on the oestrogen implant was “heaven”. Her daughter even once lent her £1,000 to get a new one fitted, as Barker’s own funds diminished.
Yet a lingering concern plagued Barker. “I worried I’d ruined my relationship with my kids,” she says. “I was lucky to get treatment before their teens. But as younger kids, they grew up around me, not with me. I was on the outside looking in, trying to manage and hide my symptoms. They bore the brunt.”
double quotation markI kept saying to my doctor, it’s not just depression, something else is doing this to meWendy Barker was caught in an exhausting cycle. Photograph: Margaret Mitchell/The Guardian
These issues – navigating relationships with their children, outbursts, finding the right treatment, overcoming guilt and shame – are common for PMDD mothers. Brighton counsellor Tamsin Taylor, known as the PMDD Therapist on social media, says mothers with the syndrome are often “riddled with guilt”. As it isn’t a curable condition, and there’s no one “proven” treatment, clients come to her to help them with the psychological impacts. “It’s a brutal condition,” she says. “These women are really suffering.”
Medical experts say PMDD is caused by the way the brain reacts to hormonal changes. Women’s health expert Dr Louise Newson says, “It’s usually triggered by changing and reducing levels of progesterone. Changing levels of oestradiol and testosterone can also have effects.”
Treatments vary in effectiveness from patient to patient – antidepressants (selective serotonin reuptake inhibitors), contraceptives, hormone therapy – but what all of them need is “love and support in a non‑judgmental environment”, Taylor says.
In Taylor’s experience, the partner tends to bear more of the brunt than the children. “Women are fiercely protective of their children. Much of the guilt I hear is that they’ve overstepped with their partner. It can tear apart relationships,” she says.
New research released this year shows PMDD can markedly affect trust and intimacy for both those with the syndrome and their partners. Her methods help people with PMDD stop beating themselves up. It is essential to make them feel heard, especially after medical professionals might have dismissed their symptoms as “classic PMS”.
“It’s very different from that,” Taylor says. “It’s much more severe, lasts longer and shows up in different ways – some describe feeling extremely depressed, others get ragey.”
Jenny Fairhurst, 41, from Crewe, noticed symptoms after having her second child. “I felt like I was behind glass – watching my kids play but unable to feel joy or join in,” she says. “I felt dead inside. I’d snap with explosive outbursts at my partner and children for the smallest things.” Then would follow the inevitable feelings of “immense guilt”.
The back and forth was unsettling. “I questioned myself constantly – I couldn’t understand the change in my mindset, thinking, emotions from one week to the next,” she says. “It was like I had a split personality. I was becoming hard to live with – and my connection with my kids and husband suffered. I felt I was losing myself.”
double quotation markThe gynaecologist said, ‘You’ve got PMDD.’ And I said, ‘What’s that?’ And I’m a GP!
One doctor dismissed it as “normal hormonal mood swings”, leaving Fairhurst feeling “dejected and unheard”. But those around her had really noticed the big change, too. “My poor husband wouldn’t know whether he was coming or going with me,” she says. “It was, like, which version today?”
After tracking her symptoms – “Day 22 was always my crash day,” she says – another GP finally listened. “It was such a turning point,” Fairhurst says. “I felt validated. Then, after trialling different treatments, I discovered that taking the Fluoxetine (an antidepressant) during the luteal phase of my cycle” – after ovulation but before menstruation – “helped me level out more intense symptoms.”
Things aren’t perfect – Fairhurst still experiences those unsettling intermittent symptoms – but her treatment gives her “that extra headspace to rationalise”, she says. Being a mum with PMDD is “soul-destroying when you know you’re not your best version of yourself”. But recent interactions with her 10-year-old son show that he understands the child‑appropriate language with which she has described the disorder.
“He knows in the run-up to my period that everything’s a bit harder for Mummy,” Fairhurst says. “What’s been so lovely is, I’ll be lying on the sofa and he’ll sense I’m struggling, and say, ‘Are you OK? Are you feeling sad and getting your period?’, and envelop me in a big hug,” she says. “I think it’s taught him real empathy. And he shows it because I’ve tried not to hide my vulnerability from him.”
Fairhurst still dreams of the day she’ll be PMDD free – many with it say their symptoms ease or vanish post‑menopause or, for some, post-hysterectomy. “I do look forward to the post-menopause years,” she admits. “But I’m thankful I’ve found a way to manage the symptoms; it’s allowed me to feel the love and joy from spending time with the kids which PMDD had stolen.”
There’s currently such little understanding in the medical community of this condition, even doctors are blindsided when they are diagnosed. Dr Milli Raizada, 40, is a GP and an expert in women’s health, yet, by her own admission, when she was diagnosed six years ago with PMDD, she had never even heard of it.
She felt the profession she’d worked in all her life had let her down. “Too many doctors, myself included, don’t have the knowledge to help women who suffer in silence,” she says. As such, she is clear on what needs to happen. “Better training. More research. Stop sidelining women’s health.”
Her husband first noticed symptoms as she came off the pill. “In the luteal phase, I’d be arguing lots with him and he said, ‘This isn’t normal’,” she says. “I’m usually resilient and a multitasker but I suddenly had impostor syndrome, felt overwhelmed and worthless, and was hypersensitive and apathetic for two weeks of the month.” After flying off the handle at her mother-in-law over a throwaway comment, Raizada knew it was time to act.
Dr Milli Raizada is a GP and an expert in women’s health. Photograph: Kat Wood/The Guardian
She made a gynaecologist appointment. “I burst into tears as I walked in, and said, ‘I’m probably wasting your time but I feel like I can’t cope,’ and he said, ‘You’ve got PMDD.’ And I said, ‘What’s that?’ And I’m a GP!”
She was prescribed Zoladex, inducing a chemical menopause. It has side-effects that make long-term use unsustainable, but has helped for now. Her marriage, though, suffered and ended in divorce. Her relationship with her children – now 12 and 10 – has improved. “They now understand how my cycle works,” she says.
Newson says PMDD often follows postnatal depression. “Women are even sectioned through misdiagnosis,” she says.
She treats PMDD with hormone treatment, which could include testosterone, progesterone or oestrogen. She says antidepressants, while somewhat effective for some women, aren’t addressing the underlying root cause. “I once prescribed them myself for PMDD – until I learned how transformational it is to replace those missing hormones.
“It’s currently a health condition understood more by women than health professionals,” she adds.
It’s not just medical help people with PMDD need; they also need psychosocial support, which is why Phoebe Williams, 28, recently founded PMDD Project, the UK’s only charity solely dedicated to premenstrual dysphoric disorder.
Williams began experiencing PMDD symptoms at about 15. By 22, she understood something was wrong.
double quotation markOne doctor said I was being dramatic and should just crack onPhoebe Williams runs the UK’s first PMDD charity. Photograph: Kat Wood/The Guardian
“I’d spent years asking myself, why am I like this? Friends weren’t reacting to their cycles like I was,” she says. “I’d get unnecessarily angry, then experience depression and anxiety. My true self disappeared for a few weeks a month,” she says.
“I’ve spoken about so many dark thoughts to various different doctors,” she says. “I’d be really vulnerable and heartfelt. I was dismissed time after time.” Yet she doesn’t blame them. “It’s not their fault,” she says. “They didn’t know what PMDD was either.” One, however, she does call out. “She said I was being dramatic and should just crack on.” Another nearly misdiagnosed her with bipolar, without asking about her cycle or hormones.
Experiencing suicidal ideation at 22, Williams finally came across an obscure blog describing PMDD. It was a lightbulb moment. “I just went, ‘Oh my God. This is what I have!’” She printed it out, took it to a male doctor who admitted he’d never heard of it, but who promised to check it out and come back to her. “He was incredible,” Williams says. “He phoned me the next day, having researched it, and said, yep, that’s exactly what you have.”
Having battled misdiagnosis, dismissal, an information vacuum and medical jargon, Williams set up the PMDD Project because she realised more needed to be done for women like her. It aims to educate medical professionals, get PMDD on the healthcare curriculum and create a helpline.
“In a crisis, the last thing you want to do is explain what PMDD is,” Williams says. She also plans an employer accreditation scheme. “We’ll train workplaces about necessary accommodations such as flexible working hours for those suffering.”
For families navigating the challenges of PMDD together, such as Barker’s, it’s common to hear mothers discuss guilt and worry about how their children will be affected by dramatic episodes. However, there’s a side‑effect that’s also little discussed: trauma bonding. Daly says her mother’s PMDD has actually brought them closer together. “Mum’s absolutely my best friend,” she says. “We live on the same street, I see her all the time.”
Now, Barker says, they even laugh about that garage incident, with her children joking about their reluctance to get into a car with her. “I can talk to my mum about anything because of how open she’s been about everything she’s been through,” Daly says. “I’m so very proud of her.”
Samaritans can be contacted on 116 123 or email jo@samaritans.org. You can contact the mental health charity Mind on 0300 123 3393 or by visiting mind.org.uk
