The first time I learned anything useful about my hormonal cycle was when I was trying – and failing – to get pregnant in my early 30s, which is surprising given that I’d been having periods for more than two decades by then. The fact that my body was giving me clear and obvious information every month, and that I’d been missing it all that time, came as a shock. When I finally did get pregnant, via IVF, the hormonal savagery of it all was equally arresting. Then, a year after my second child was born, my periods became extremely hard to manage. Over the following couple of years, I also watched my mental health start to do what felt like cartwheels: mostly, I’d be fine, but there’d be weeks when I couldn’t sleep for wild and worrying imaginings, when rage would bubble out of nowhere, or when a sob would always be caught in the back of my throat.
A couple of months ago, I had another shock when I was diagnosed with premenstrual dysphoric disorder (PMDD), a condition I had never heard of. (I had assumed I was perimenopausal.) How PMDD, also known as severe premenstrual syndrome, works isn’t entirely understood, but it is caused by the ebb and flow of cyclical hormones, such as oestrogen and progesterone, which explains why I feel normal half to three-quarters of the time, but crashingly low, unable to sleep and thoroughly furious for up to 10 days before my period arrives, after which I go back to normal again.
People with PMDD have a neurobiological sensitivity to hormonal changes – we are wired up differently – rather than a hormonal imbalance. PMDD affects 5-8% of people who menstruate, with symptoms (of which there are more than 100 possibilities, both physical and mental) occurring in the 7-14 days leading up to each period. There are about 14.6 million women aged between 15 and 49 in the UK, so between 730,000 and 1.2m may have PMDD/severe PMS in this country alone.
I don’t know how long PMDD has been a part of my life. I have, since my teens, seen five different therapists and numerous doctors, first for depression (which never felt like the right diagnosis) and later for anxiety. None of them ever asked me about my hormonal cycle, something which a qualitative investigation into PMDD diagnosis, undertaken in 2020, showed is absolutely standard. For many of us, it takes decades to get a diagnosis of PMDD or severe PMS, and sometimes only after misdiagnosis for illnesses like bipolar disorder, or being dismissed completely for years.
Over the past four years, I have had multiple appointments – mainly by telephone – with six GPs at the busy inner city practice where I’m registered. My symptoms – which would come and go seemingly at random – were anxiety, exhaustion, insomnia, brain fog, weight gain and impractically heavy periods; at the same time I had several appointments about joint pain and reflux, which I now know can both also be associated with cyclical hormones and PMDD. Blood tests didn’t show any signs of early perimenopause (granted, they rarely do) and there is no blood or hormone test for PMDD. Although many of my doctors were sympathetic, I was also told that “having young children is hard and you’re in the thick of it”, and that I could try going to bed earlier, eating better (I’m a cookbook author) and asking my partner to do more (he already was). It wasn’t until I finally had a 20-minute appointment at an NHS menopause clinic, after a nine-month wait, that I was told – based on the fact that my symptoms only appear in the second half of my cycle and given that my many hormone tests had all been normal – that I have PMDD.
I’m an anxious person and I’ve known for a long time that my anxiety is far worse just before my period. But, because I hadn’t ever been prompted to track my emotions, pain levels and mental wellbeing alongside my cycle, I hadn’t realised it was all connected to my cyclical hormones. Since it can take a week or two to get a GP appointment, often by the time I spoke to a doctor I’d be OK again and it would be hard to explain how I’d felt just days before. For many women, symptoms worsen as they enter perimenopause and mine have probably been more acute since having IVF, too, and as stress is also an aggravating factor, the pandemic probably didn’t help. But I’ll never know if I’ve always had severe PMS, nor if, had I known, I might have been less hard on myself for failing to pull myself together over years of trying.
Clearly, the NHS is struggling under the weight of its responsibilities and lack of funding and some will argue that there are other areas where its limited budget should be spent first. But PMDD is, for many people, very serious. It is life altering and, for some, life threatening. It is a huge risk factor for suicide, with one recent global study suggesting that up to 34% of people with PMDD have attempted suicide, 51% experience self-harm and 87% experience passive suicidal ideation. Another study found that 17% of subjects reported having lost a job due to PMDD, 57% had lost a partner, and 43% reported problems with parenting. Just over 10% of respondents said they felt completely unable to parent during the worst parts of their cycle.
Given all this, why does it seem so hard to get a diagnosis? There are three main reasons. First, GPs have historically been poorly trained to recognise PMDD or severe PMS (which is not their fault). Dr Louise Newson, who founded the Balance app and runs a menopause clinic, says: “Many GPs, including myself, have little or no training in conditions affecting female hormones, which includes PMDD. Often women will discuss how they are feeling with their doctor who may dismiss or even trivialise their symptoms as they are not aware of PMDD. There’s no blood test to confirm it and if the psychological symptoms are taken in isolation, they can be mistaken for general anxiety or clinical depression, which leads to missed diagnoses and missed opportunities to give women appropriate advice, support and treatment.”
Nick Panay, a consultant gynaecologist at Queen Charlotte’s Hospital and professor of practice at Imperial College London, agrees. “The training in this area really needs to be beefed up – to the best of my knowledge, there isn’t a GP training module on management of severe PMS or PMDD.” Panay is chairman of the advocacy charity the National Association for Premenstrual Syndromes (Naps) and has created a set of diagnosis and treatment guidelines for GPs and patients (a simplified version of one he helped design with the Royal College of Gynaecologists and Obstetricians). The first thing it recommends is to get anyone suspected of having severe PMS/PMDD to keep a cycle and symptom diary for a couple of months, after which diagnosis can be pretty straightforward. “We distributed more than 10,000 copies of our guidelines to practices, but you can take a horse to water…” says Panay. “There are many GPs out there who are excellent and understand this condition extremely well. But others don’t have a particular interest in this or don’t have the time. It’s a postcode lottery. It depends on which GP you see and also whether there is a clinic that you can be referred to if your symptoms are severe.”
Dr Melanie Davis-Hall is a GP and medical director of the Lowdown, a women’s health review platform on which users can share experiences of contraception, treatments for polycystic ovary syndrome and endometriosis, and of trying to conceive. Conversations with patients on the site so often featured PMDD that it led her to start developing short-form educational material for doctors who use the British Medical Association’s BMJ Learning online, having discovered there was nothing there on PMS or PMDD at all. Short-form content is popular among GPs because “most continual professional development is self-funded and in your own time,” she says. A 2023 BMJ survey also made clear that GPs are currently under extraordinary levels of pressure, with stress up 11% since 2019, and workload increases far higher than in other countries. Although tempting, urging already overwhelmed GPs to do more with what little time and energy they have isn’t necessarily the answer.
Whether PMDD should be treated as a gynaecological, endocrine or psychiatric issue is a second part of the puzzle. Premenstrual dysphoric disorder is the name favoured in the US, where the condition has an entry in the Diagnostic and Statistical Manual of Mental Disorders (DSM 5), and there it is more likely to be treated by a psychiatrist. In the UK, many doctors prefer to call it severe PMS and first-line treatment is usually via GPs and gynaecologists, often involving hormonal medications, although cognitive behavioural therapy is also recommended, as are antidepressants, but used only on the worst days of the cycle.
Ideally, it should probably be treated as a mixture of all three. But psychiatric services are already over-stretched, says Professor Michael Craig, who treats the most serious cases of severe PMS and PMDD at the Maudsley Hospital in south London. “Adult mental health services are in a mess and have been for some time, so psychiatrists are not desperate to take on a new condition while they are being forced to firefight other very acute cases,” he says.
As a gynaecologist who is also a psychiatrist, he has unique expertise, which is why he set up the Female Hormone Clinic at the Maudsley 15 years ago to take referrals from all over the country. “I think it’s very difficult for either speciality to fully grasp what the other one is doing,” Craig says, “so it’s an area that has fallen between specialities. Within the field of gynaecology, there are some people who are more psychologically minded and more suited to managing conditions such as PMDD. But I think if you spoke to the majority of gynaecologists, it would not be their preferred sort of thing to be treating.”
The name PMDD is gaining ground in the UK, particularly among patients. Whether this is a good thing or not is up for debate, as Eleanor Morgan, a psychotherapist and author of Hormonal: A Conversation About Women’s Bodies, Mental Health and Why We Need to be Heard, says: “It’s undoubtedly true that having a term, or a diagnostic framework, can help someone make sense of their experience. It can make people feel less isolated, by the fact of knowing that others feel the same and the validation that comes from there being a proper explanation for years of minimised, dismissed and misunderstood distress. The communities, particularly online, of women with PMDD also provide validation and a sense of being seen – which is therapeutic in itself.
“I’ve worked with people who’ve received several different diagnoses over the course of their lives,” she continues, “some validating, others deeply oppressive. My worry is that, when people position – or, in the inherent power dynamic of clinician-patient, are encouraged to accept and treat – their distress as something wrong or faulty in the system, they jettison their sense of agency.”
For some patients, naming it as a “disorder” is an unhelpful pathologisation of what they’re going through, while for others, because of pre-existing biases around either mental health or hormonal health, they may prefer either a more psychiatric-sounding name, or less of one. (I’ll admit that initially I quite liked having a name for it that sounded more serious than plain old PMS and was a bit annoyed when, during an appointment, a gynaecologist dismissed the term PMDD as an “unnecessary Americanisation”.)
The third reason PMDD is so poorly understood and so often under or misdiagnosed, is that although it affects trans and non-binary people, too, it’s classified as a women’s health problem and as such isn’t a major area of research or education. Women didn’t even get their own health strategy until 2022 and to the disappointment of many PMDD advocates and practitioners, it only mentioned PMS once. “Women’s health is historically under researched and underfunded,” says Caroline Criado Perez, who researches data bias in medicine and science and is author of Invisible Women and a Substack newsletter of the same name. “And the story you hear again and again from women is that they have been struggling for years with everything from endometriosis to cancer, but they are told it’s all in their head, that they’re actually just struggling to recover from having given birth, or that everyone feels this kind of pain.”
Claudine Domoney, a gynaecologist specialising in the treatment of PMDD/severe PMS, and Chelsea & Westminster’s gynaecology clinical effectiveness lead, agrees. “I hope that the expansion of interest in menopause and perimenopause will then extend into PMS and PMDD,” she says, citing the Davina McCall effect on menopause awareness. “Especially because women who have significant premenstrual symptoms often will have more symptoms around the perimenopause.” She is frustrated at the lack of knowledge in general practice. “The absolute minimum that we should expect from a big practice is that hormonal health – peri- or menopausal or premenstrual – should be addressed by somebody within it. There just needs to be somebody who is sent out on a study day once every two years. It doesn’t have to be a doctor, it could be a nurse practitioner, and then people would be in a space in which they can be heard.”
How to treat PMDD is the final question. As Davis-Hall notes, doctors are trained to provide medication, but some women find lifestyle changes helpful, too. “It takes a lot to holistically go through your life, looking at underlying stress, diet, exercise, alcohol and so on – and see what could be changed for the better. There are some amazing GPs who are less time pressured, but you’re not usually going to get that in a 10-minute consultation, so you potentially have to go and do your own research.” And that’s particularly hard when you feel like crap half the time.
I still haven’t decided whether I’ll take medication. My current options are a particular type of combined birth-control pill or to have a progesterone coil fitted, plus possibly an HRT oestrogen gel, or to take antidepressants for 5-10 days each month. Although it’s severe PMS, I’m at the less severe end and in a way, what I wanted most was just to find out what was going on in my brain and my body, which I was pretty sure wasn’t just down to having small children.
And, while I’d love to magic it all away, each medication comes with potential side effects and downsides. Plus, because it’s a highly variable condition, with so many possible symptoms, treatment tends to be very individualised, with a certain amount of trial and error, too. While it’s not a solution, just knowing what’s going on when I feel disproportionate anger boiling over, or feelings of being overwhelmed engulfing me, has been more helpful than I could have imagined.
For now, I’m experimenting with upping my magnesium, calcium, vitamin D and B, interventions which have a small amount of evidence behind them. (Drinking less alcohol in the second half of my cycle also seems to help.) Some people find supplementing with the herb vitex agnus castus is helpful and, again, there’s some clinical evidence that it can be, but as research is fairly limited and studies so far have been small, we don’t yet know exactly why or at what dosage. And, as Domoney says, “We probably won’t ever know, because no one is going to spend money looking at it, because no one is going to make any money out of it, at least not until women’s health is far higher up the agenda than it currently is.”
For information and help, contact pms.org.uk; thelowdown.com; or call the Samaritans on 116 123
Be Bad, Better: How Not Trying So Hard Will Set You Free by Rebecca Seal is published by Souvenir Press at £14.99. Buy it for £13.19 at guardianbookshop.com
