Over 800,000 Women in the UK Have PMDD, Yet 90% Are Misdiagnosed—Here's What's Going Wrong

Premenstrual dysphoric disorder, a debilitating condition which affects approximately 824,000 UK women and people assigned female at birth, was only formally recognised in the World Health Organisation’s International Classification of Diseases in 2019.

I’ll say that one more time. A condition which affects 824,000 people in the UK, and which is associated with depression, anxiety, social isolation, paranoia and a seven times higher risk of suicide, has only been officially recognised for seven years.

It’s a concerning reality, one with major repercussions for women’s health today. Here in the UK, it takes an average of 12 years for someone to be correctly diagnosed with PMDD, with the International Association for Premenstrual Disorders estimating that up to 90% will receive a misdiagnosis during that time.

“I was repeatedly treated for depression without anyone connecting symptoms to my menstrual cycle,” says 31-year-old Robyn, who waited 16 years for a correct PMDD diagnosis. When, after seeking help from a private gynaecologist, she was finally diagnosed, she says the feeling was a mixture of relief and frustration. “I spent years believing there was something fundamentally wrong with me,” she explains. “It’s difficult not to feel let down by the system.”

So why are women like Robyn being left for so long without answers? What’s behind the confusion and misunderstanding surrounding PMDD? And crucially, what needs to change? In search of answers, we spoke to leading neuroscientists, psychotherapists and doctors specialising in PMDD, along with women who live with the condition, to understand why so many are currently being failed.

If what you read here resonates, I recommend checking out our investigation into the connection between medical trauma and endometriosis. We’ve also got expert-led guides to PMOS, how to recognise the symptoms of endometriosis and Dr Hazel Wallace’s advice for advocating for yourself in medical settings.

Over 800,000 Women in the UK Have PMDD—Your Guide

What is PMDD?

A cyclical disorder in which the brain reacts abnormally to changes and fluctuations in hormone levels, PMDD has historically been described as severe premenstrual syndrome (aka PMS).

But while the two do have some crossover, psychotherapist and founder of the PMDD Collective, Ally McHugh, says this description misrepresents and undermines the severity of the condition. “To some degree, PMS is normal,” she explains. “The symptoms of PMDD, on the other hand, are not. In referring to them as ‘bad PMS’, people are left feeling they should be able to manage their symptoms. When they’re unable to do that, they understandably feel a lot of guilt and shame.”

These symptoms, which range from depression, rage, anxiety, social anxiety, paranoia and insomnia, to joint pain, fatigue, inflammation, acne flare-ups and migraines, can last for up to two weeks out of the month, after ovulation and before a period. In fact, “many people feel a complete disconnection from themselves,” says McHugh, whilst Dr Louise Newson, GP and author of The Power of Hormones, describes it as feeling like “Jekyll and Hyde.”

It’s a reference 38-year-old Caroline and 33-year-old Abi* can relate to. “There were two days a month where I genuinely wanted to divorce my husband,” says Caroline. “I would yell at him, slam doors and yell at my kids. It felt completely out of control. And then, when it passed, the guilt was overwhelming.”

Abi* echoes her. “It feels like there’s another person living inside me.”

It’s not entirely known why some people’s brains react differently to the hormonal fluctuations that occur throughout the menstrual cycle, but research does indicate which brain regions may be involved. “The leading evidence centres on the brain’s GABA region,” says Alice van der Schoot, neuroscientist, nutritionist and founder of Ditto. “In the luteal phase when progesterone rises and falls, our GABA receptors should adapt to maintain a calming effect. In PMDD brains, that adaptation appears to fail, resulting in mood instability that can feel completely uncontrollable.”

She adds that there are also visible differences in the structure of PMDD brains. "Brain imaging studies have revealed smaller grey matter volumes in several brain regions, including the major processing centre for emotions. These brain structure differences are so distinct that AI could distinguish PMDD brains from controls."

What that means, she makes clear, is that PMDD is "not someone being dramatic. There are measurable, biological differences."

Why is PMDD so often misdiagnosed?

For such a life-altering condition, you would think that prompt and accurate diagnosis would be standard. But as the statistics at the beginning of this story showed, this is far from the case for many women, who go beyond a decade living with debilitating mental and physical symptoms. The question is, why is PMDD proving so difficult to spot?

“There are two major layers to this crisis,” says van der Schoot. “First, there’s a massive lack of awareness. And second, there’s the ongoing dismissal of women whose concerns are not being taken seriously.”

She’s right. Data indicates that less than 10% of medical professionals are confident in diagnosing PMDD; a fact that, in the US, has resulted in women seeing up to ten different experts and being prescribed five different medications, before gaining the correct diagnosis.

The issue, it appears, begins with the education in our healthcare system. “Many doctors just aren’t trained in PMDD,” explains Dr Newson, who says that she herself wasn’t trained in the condition at the beginning of her career.

The upshot is that many PMDD symptoms are mistaken for other disorders. “Often people will report the psychological symptoms of PMDD and be referred to psychiatry or given antidepressants when actually what they might need is a referral to a gynaecologist,” says McHugh, who says that common misdiagnoses include bipolar type 2, emotionally unstable personality disorder and depression.

It’s here that, according to McHugh, medical dismissal and gaslighting can really go into overdrive. “Once you’re labelled with one of these conditions, it can be difficult to get to the point of correct diagnosis because of the stigma around mental health,” she explains. “Often people find that these labels make it harder to be listened to.”

On the other end of the spectrum are women, like 33-year-old Abi*, who have their symptoms diminished and reduced without any form of diagnosis. “I’ve been told it was just anxiety, or just bad periods,” she says. “They made it out to be my problem, and that I just needed to look after myself better.”

How does misdiagnosis impact women with PMDD?

Whether you’re incorrectly diagnosed or simply brushed off, the consequences of PMDD going untreated can be fatal, with over a quarter of people living with the condition having attempted suicide and 82% reporting suicidal thoughts.

“I remember sitting on the bathroom floor, thinking about death in a strangely comforting way,” remembers Caroline. “I never thought about the practicalities of suicide, but death was on my mind a lot.”

It’s a reality Dr Newson confronts in her clinic regularly. “Finding the appropriate treatment for someone with PMDD is not just life-changing, it can be life-saving,” she says, speaking from both personal and professional experience, having supported her own daughter, Jess, through her diagnostic journey.

But even beyond this worst-case scenario, PMDD can be destructive to careers, relationships and self-esteem when not properly managed and supported.

“Every month, I find myself looking at the people I love most in the world and thinking ‘I want to run away and start a completely different life,’” says Robyn, whilst Caroline remembers having to talk to her manager because symptoms were so debilitating. “It was incredibly hard to show up and pretend everything was fine,” she says. “Sometimes I would just start crying in the middle of a meeting for no reason.”

Caroline was fortunate to have a manager who responded empathetically, but this is far from the norm. In fact, unemployment amongst women with PMDD is 29% higher than average, with sick leave also up by 38%. “Even when symptoms lift, the pressure to catch up and overperform before the next luteal phase can lead to burnout, strained relationships, career stagnation and, for some, leaving jobs altogether,” confirms van der Schoot.

Of course, this highlights the socioeconomic burden of PMDD, but the stress of being unsupported, disbelieved or dismissed also takes a toll. “Being told that it’s normal to feel low before your period, or that you’re just more sensitive, leads many to feel they are overreacting, or to question their own experiences,” says van der Schoot. “This is devastating and can lead people to internalise their symptoms as a personal failure.”

How can diagnosis and treatment for women with PMDD improve?

Clearly, something needs to change here, and the onus, say the experts, is on the healthcare system, rather than us as individuals.

But unusually for a women’s health condition, van der Schoot says the answer isn’t necessarily more research. “Lots of helpful studies already exist,” she says. “The diagnostic framework exists. What's missing is awareness, education, a willingness to listen, and an end to the pattern of dismissal.”

McHugh agrees, adding that there needs to be more conversation about menstrual health generally within medical appointments. “Enquiring about menstrual health should be a standardised part of any GP appointment or mental health assessment,” she suggests.

Stretching beyond diagnosis, van der Schoot says that treatment pathways also need to improve. “Hormonal contraceptives are currently a first-line option, yet these show highly inconsistent results. The other standard option, which is SSRIs (antidepressants), can help a proportion of people but fail to work for 39%.”

What’s needed, she says, is a more individualised approach to treatment. “PMDD is complex, and the solution is rarely just one thing. It’s a journey of finding out what works for an individual, which often combines medical and holistic approaches. That needs to be better recognised and supported.”

5 tips for women navigating diagnosis and treatment for PMDD:

Whilst changes to the healthcare system are essential, for women living with PMDD right now, they can feel like a frustrating and abstract future. That’s why we asked the experts for tips to help women advocate for themselves in the here and now.

1. Validate your own experience

First, van der Schoot says, it’s important to know that “a black cloud descending over you every month is not normal, and not something you should have to push through alone.” Simply validating that can be a powerful first step in remaining steadfast in your reality.

Beyond that, however, all three experts say that doing as much research as you can will help you to feel informed and prepared to have conversations with doctors, managers, family and friends.

“I find that if something makes sense to a patient, it’s probably right,” says Dr Newson, “which is why it’s important that you get as much information as possible.” Her own free app, Balance, contains a library of information, plus a symptom questionnaire and tracker that can be useful for women navigating PMDD.

Elsewhere, the IAPMD has facts, figures, support and self-screening tools, whilst both van der Schoot and McHugh post regular PMDD information on Instagram via their pages, @ditto.daily and @the.pmdd.collective.

2. Track your symptom patterns

Once you have the information you need, the experts say that tracking your symptoms is a crucial next step. “The pattern of your symptoms is your evidence,” says van der Schoot, who tells us to track mood changes, depressions, shifts in thinking or feelings of being unlike yourself.

“Track physical symptoms too,” says Dr Newson, who says that skin changes, heart palpitations and joint pain can all be contributing evidence of PMDD.

3. Be specific about their impact

Before you go to your doctor, van der Schoot says it’s helpful to be clear on the ways that PMDD is affecting your life. “This is the impact it’s having on your work, your relationships; anything that impinges on your daily life,” she says. “The more concrete you are, the harder you are to dismiss.”

4. Find a community

This one is essential, as social support is one of the biggest protective factors for mental health. “It can be overwhelming to fight a battle like this yourself,” recognises Dr Newson. “This is why it’s important to share the information with someone you trust, who can advocate on your behalf.”

This could be a friend, family member or partner, but it could also be through a support group or community, says McHugh. “Whether it’s PMDD-specific therapy, peer support groups or community, this network is crucial whilst navigating the medical system,” she says.

Examples of community support groups include McHugh’s own PMDD Collective and The PMDD Project, a charity with various online and in-person support groups across the UK.

5. Don't give up

Easier said than done, we know. Being dismissed by a doctor is undeniably upsetting and off-putting, and something you should never have to experience.

Unfortunately though, it remains common. Which makes it very important that you don’t give up. “Until the system stops failing women with PMDD, many have to fight to be heard,” says van der Schoot. “If your doctor dismisses you, find another one. You are not overreacting, you are not making it up, and you are not alone.”