Premenstrual dysphoric disorder (PMDD) is thought to impact 5 to 8 per cent of people who menstruate, according to The National Association of Premenstrual Syndromes.
And yet, it remains a largely under-researched and underdiagnosed area of what might generally fall under the umbrella of women’s health (though of course, it can affect anyone who has a menstrual cycle).
While it’s thought that about three-quarters of menstruators will experience premenstrual syndrome (PMS) at some point in their lives, PMDD is a more severe - oftentimes debilitating - side effect of menstrual health that can affect individuals for as long as two weeks during the course of their cycle.
Here’s what you need to know - and what to do if you think you might have PMDD.
What is PMDD?
Let’s break it down word by word. Firstly, on the most literal level, think about what dysphoria means. The grammatical opposite of euphoria (a feeling of intense happiness), dysphoria correlates with a sense of unease, unhappiness and dissatisfaction.
The “premenstrual” part should be quite self-explanatory, and a “disorder” in a health context means the mind or body (or both, in this instance) are not functioning in a “normal” way.
According to Ally McHugh and Emily Holloway, both therapists specialising in PMDD and co-founders of activist group PMDD Collective, PMDD can be defined as “a cyclical neuro-endocrine disorder, caused by a sensitivity to the normal fluctuations of hormones throughout the menstrual cycle”.
Symptoms typically begin from ovulation (about 14 days before your next period in a typical 28-day cycle) and end within the first few days of menstruation.
That means for some people, half of every single month can be lost to PMDD.
What are the main symptoms?
As with any condition, the symptoms vary depending on the individual. But because PMDD is intrinsically linked to hormones, the signs often manifest both physically and mentally.
I’ve had historical dealings with PMDD. When I first spoke to a doctor about it, I told them that every time my period was due I “couldn’t stop crying and eating and felt suicidally depressed”.
As it turns out, that’s actually pretty typical. The common symptoms, confirmed by PMDD Collective, include sudden changes in mood, irritability, depression, insomnia, anxiety, rejection sensitivity, difficulties with focus and concentration (brain fog).
They can also cover migraines, cravings, nightmares and body dysmorphia.
As McHugh and Holloway point out, “there are physical symptoms too like fatigue and exhaustion, joint pain, breast tenderness”.
“The impact is huge - it can cause interpersonal difficulties which can affect work, relationships and self-worth,” they added.
And perhaps most terrifyingly of all, as many as 70 per cent of people with PMDD have suicidal ideation, and 34 per cent have attempted it.
“In the UK, that translates to as many as 630,000 people feeling suicidal every month. And that’s just people who have been diagnosed,” said McHugh.
What is the difference between PMDD and PMS or PMT?
Most people with a period are au fait with PMS and premenstrual tension (PMT). Cramps, tiredness, cravings, irritability, breakouts and breakdowns are pretty much part and parcel of owning ovaries. But knowing that doesn’t make it any easier to deal with.
The key difference is the severity of PMDD. If you’re worried that your supposed PMS or PMT is that bit worse than your friends, or if you identify with any of the symptoms listed above, it might be time to consider speaking to professionals.
“To get a diagnosis at least one of the key symptoms (mood swings, rage, anxiety, and depression) must be present during the luteal phase (second half of the cycle), as well as four other symptoms, including brain fog, fatigue, appetite changes, sleep disturbances, feeling overwhelmed and physical symptoms such as migraines or sore breasts,” explained McHugh.
If you can identify with any of the symptoms listed above, keep reading to find out what you should do next.
Why is PMDD still so misunderstood in the medical field?
“Simple answer, the patriarchy!” said McHugh.
“It’s so often dismissed as 'normal PMS'. It can also be misdiagnosed as rapid cycling bipolar disorder, due to its cyclical nature, however I believe it’s missed because professionals don't ask about menstruation and often don't make that link between mood and hormones”.
McHugh explains that, until very recently, PMDD hasn't been included in medical training and was only included in diagnostic manuals in 2022.
“84 per cent of our social media followers have been dismissed by a doctor because their blood tests came back ‘ok’,” she said.
“PMDD is a cyclical hormone-based mood disorder, it is not a hormone imbalance and won’t show up on a blood test”.
With so little research to go off, how have doctors been treating PMDD?
In my case, it was suggested I take antidepressants - but just for half of the month.
“Many people are dismissed or handed birth control as an answer for all gynaecological issues,” McHugh said.
“With PMDD the wrong birth control can make things worse - and doing nothing just compounds the idea that it’s a character flaw or an overreaction”.
But PMDD Collective, along with a number of other organisations and professionals focused on the subject, are hoping to change that.
“Our key objectives are about raising awareness and creating change. For example, looking at how we’re educating children on the menstrual cycle,” McHugh said.
“Menstrual health has always focused heavily on fertility. Historically, sex education was exclusively about ovulation and menstruation, neglecting to teach all four phases of the menstrual cycle and the important role they play.
“If people aren’t educated about their own bodies, they can’t advocate for themselves”.
Incredibly, the organisation also just ran its first awareness training for 100 UK-based doctors.
“We hope to keep expanding our training for clinicians, educators and healthcare professionals too”.
And if someone reading this article thinks they might identify with the symptoms of PMDD, what should they do?
“Organisations like ours are predominantly about wellbeing. We run a monthly support group, our inbox is always open and we create informative content on our social media channels,” McHugh said.
It still takes an average of 12 years for PMDD to be diagnosed, and for people to get the potentially lifesaving support that they need.
“The first step is to track your cycle,” advises McHugh. “Tracking physical, mental and emotional symptoms will give you insight into your cycle and will help you learn about all your physical and emotional shifts throughout the month.
“Then, if you’re seeking a diagnosis, take at least three months of tracking data to your GP.
“They may want to explore first-line treatments with you, such as the contraceptive pill or SSRI antidepressants.
“At this point we would recommend requesting a referral to a specialist gynaecologist with an awareness of PMDD. They can explore further treatment options, including chemical and surgical menopause”.
And, crucially, McHugh adds, “I'd also recommend reaching out for support, whether that's from friends or family or from our online community.
“PMDD can be an isolating condition. Having support and knowing that you are not alone is incredibly powerful”.