‘It’s a double stigma of menstruation and mental illness’
Content warning: suicide.
“I started my periods around 10, and by 13 my symptoms had become unbearable,” says Stephanie Cullen, a mother of two living in Longwell Green. “I tried to take my own life and that’s when I was first prescribed antidepressants.”
She would be 24 years old – 11 years after that first suicide attempt – before she would receive a diagnosis of Premenstrual Dysphoric Disorder (PMDD). Even though the condition affects one in 20 women and people assigned female at birth – making it more common than schizophrenia – a lack of awareness means GPs often fail to recognise it.
“It wasn’t until I was 20 that I connected it to my hormonal cycle,” says Stephanie. “I thought I was crazy, everyone else thought I was crazy.”
PMDD affects women during the first half of their menstrual cycle before menstruation, so that it’s often misdiagnosed and dismissed as ‘just bad periods’. In reality, PMDD is a severe negative reaction in the brain to hormone changes, meaning that symptoms hit at the same time every month, leading to two weeks of severe depressive lows during the first two weeks, followed by two weeks of manic highs.
Alongside physical and behavioural symptoms, people experience extreme anxiety, anger, depression, or in some cases feel suicidal – with one study finding 34% of sufferers had attempted to take their own life.
“With PMDD, you get to the point where you don’t want to be here anymore,” explains Stephanie. “That is not normal and it does need to be acknowledged in its own right.” But even so, NICE (National Institute for Health and Care Excellence) guidelines still define PMDD as severe PMS.
A lack of awareness means an accurate diagnosis takes 12 years on average, with many women seeing up to 11 healthcare providers before securing one. “It’s hard to get diagnosed, because you have manic hyper moments and then manic lows, which is why you get misdiagnosed with bipolar,” explains Nicky Ann Walker, who runs a Bristol-based PMDD support group.
Nicky set up the support group over lockdown, when isolation made her symptoms feel more extreme. It has been a lifeline for many women searching for answers about the condition, sharing advice on dealing with it and having their experiences validated. They have a private WhatsApp group so women can message when they’re in crisis and receive support.
PMDD was recently added to the Equality Act of 2010, which means reasonable adjustments have to be made by employers and people with the condition can claim disability allowance and personal independence payments (PIP). Empowering women to do this in the workplace is a huge part of the support group’s work. “That has been the biggest thing, how workplaces are meant to deal with a disability that seems to come and go,” says Nicky.
She’s speaking from experience. She has lost multiple jobs because she needed time off during probation, and was fired from a job at a refugee charity because her manager couldn’t understand why her mood fluctuated so much. “It’s hard not to be seen as an incapable person,” she adds. “You’re working at half capacity compared to most people.”
‘A long history of hysteria and crazy women‘
Even though it’s both a mental and physical illness, PMDD is classified as gynaecological so it’s rarely treated by psychiatrists, while doctors all too often suggest drastic measures like getting pregnant to stop the menstrual cycle in its tracks, rather than encouraging the healthy management of symptoms. “When I was 19 talking about PMS, the GP asked me if I had thought about having a family yet,” says Stephanie, shaking her head in disbelief.
Stephanie’s diagnosis of severe PMS was being treated with antidepressants and different types of contraceptives, but when she fell pregnant her symptoms worsened. “My son was induced because my mental health was so bad,” she says, as hormones tend to build towards the end of pregnancy. She was then referred to a mental health team and psychiatrist, who noticed the cyclical nature of her symptoms. “That’s when I got a confirmed PMDD diagnosis.”
After Nicky was diagnosed, her gynaecologist advised she took antidepressants and hormones before her period, and then suggested resorting to medical menopause if they didn’t work. “It feels drastic when you’re 24,” she says. “I’ve always wanted to be a mum and seeing a lot of women on this journey who’ve had hysterectomies or a medical menopause was encouraging, but also terrifying.”
Their struggles form part of a wider crisis in women’s healthcare, which brought about the government’s Women’s Health Strategy for England earlier this year. It arrived with some fanfare, but also concern from organisations such as the Royal College of Obstetricians and Gynaecologists that there was no funding put forward as part of the ambitious plans.
There is also little new on mental health in the strategy, except for the government’s existing pledge to invest £2.9bn by 2023–24. Meanwhile, depression and anxiety are increasingly prevalent among women. One large-scale NHS survey found 19% of women experienced common mental health disorders compared to 12% of men, while 10% of women suffered severe symptoms compared to 6% of men.
“It is vital that we close the gender health gap and ensure all women can access the treatment and services they need,” says Karin Smyth, MP for Bristol South who has worked in the NHS. “Yet the latest data shows that half a million women are on NHS gynaecology waiting lists in England – a 180% increase since 2010.
“For the Women’s Health Strategy to be effective, ministers must urgently address NHS backlogs, bring down waiting lists and bring forward a credible plan to recruit and strengthen the NHS workforce.”
PMDD is only mentioned once in the strategy, but for advocates this small gesture feels like a landmark moment. “My biggest ambition is that my daughter will learn about it in school,” says Nicky. “That it’s part of education and part of workplace policy that support is offered to women around their menstrual cycle and their menstrual health.”
Journalist Caroline Criado-Perez has written about how medical studies by women for women are less likely to be funded than studies by men for men, and that clinical trials often use men in studies due to unfounded concerns that women’s fluctuating hormones would affect results. These systemic issues create a huge gender imbalance in medical knowledge that has a severe impact on women’s lives.
“The fact that we assume that male bodies are the body of reference and female bodies are male bodies but with pesky hormones going around, that’s misogyny in my opinion,” says Arianna di Florio, a reproductive mental health researcher at Cardiff University running the UK’s largest clinical study into the biological and environmental factors behind PMDD. “It’s a double stigma,” she says of the condition. “The stigma of menstruation and mental illness. When they’re combined, you have a long history of hysteria and crazy women.”
With huge pressure on GPs and a dismal backlog in NHS mental health care, it’s hard to imagine progress on PMDD. In the meantime, people like Stephanie and Nicky will continue to tirelessly advocate for themselves and their community, to learn how to manage the condition in the workplace and in personal relationships, and to push for more research and awareness.
“The feelings of shame, embarrassment, will bleed into the rest of my life,” says Stephanie. “Before my husband and before my children, I did fucked up stuff. I didn’t even see patterns of behaviour – rage and the extremes I would go to.
“The older I get, the more I try to separate that part of me. I have to believe that I am a good person, because I know the person I am is different during the first half of my cycle. I feel guilty about the things I can’t do with my kids or being short-tempered. I don’t want them to remember me like that.”
Recruitment for Arianna Di Florio’s study is ongoing. More information can be found here.
If you’re affected by thoughts of suicide, you can call the Samaritans on 116 123.
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A brilliant article Aphra! Thank you for being the best kind of journalist and reporting accurate information and highlighting such imperative topics.! Steph.