Premenstrual dysphoric disorder (PMDD) is said to affect 5 to 8 percent of people who menstruate, according to the National Association of Premenstrual Syndromes.
And yet it remains a largely under-researched and under-diagnosed area of what could generally fall under the umbrella of women’s health (although, of course, it can affect anyone who has a menstrual cycle).
While about three-quarters of menstruating people are thought to experience premenstrual syndrome (PMS) at some point in their lives, PMDD is a more serious – often debilitating – side effect of menstrual health that can affect individuals for up to two weeks during menstruation. period. course of their cycle.
Here’s what you need to know — and what to do if you think you have PMDD.
What is PMDD?
Let’s break it down word by word. First, think about what dysphoria means on the most literal level. The grammatical opposite of euphoria (a feeling of intense happiness), dysphoria correlates with a feeling of unease, unhappiness, and dissatisfaction.
The “premenstrual” part should be pretty self-explanatory, and a “disorder” in a health context means the mind or body (or both, in this case) not functioning in a “normal” way.
According to Ally McHugh and Emily Holloway, both therapists specializing in PMDD and co-founders of the PMDD Collective, PMDD can be defined as “a cyclical neuroendocrine disorder, caused by a sensitivity to the normal fluctuations of hormones during the menstrual cycle. ”.
Symptoms usually start from ovulation (about 14 days before your next period in a typical 28-day cycle) and end within the first few days of your period.
For some people, that means half of each month could be lost to PMDD.
What are the main symptoms?
As with any condition, symptoms vary depending on the individual. But because PMDD is intrinsically linked to hormones, the symptoms often manifest themselves physically as well as mentally.
I have had historical contacts with PMDD. When I first talked to a doctor about it, I told them that every time my period would come I “couldn’t stop crying and eating and feeling suicidally depressed”.
It turns out that’s actually pretty typical. The most common symptoms, confirmed by PMDD Collective, include sudden mood swings, irritability, depression, insomnia, anxiety, sensitivity to rejection, problems with focus and concentration (brain fog).
They can also cover migraines, cravings, nightmares, and body dysmorphia.
As McHugh and Holloway point out, “there are also physical symptoms such as tiredness and exhaustion, joint pain, breast tenderness.”
“The impact is huge – it can cause interpersonal problems that can affect work, relationships and self-esteem,” they added.
And perhaps most frightening of all, a whopping 70 percent of people with PMDD have suicidal thoughts and 34 percent have tried.
“In the UK, that translates to a whopping 630,000 people being suicidal each month. And that’s just people who have been diagnosed,” McHugh said.
What is the difference between PMDD and PMS or PMT?
Most people who have periods are familiar with PMS and premenstrual tension (PMT). Cramps, fatigue, cravings, irritability, breakouts and breakdowns are just about an essential part of owning ovaries. But knowing that doesn’t make it any easier to deal with.
The main difference is the severity of PMDD. If you’re concerned that your alleged PMS or PMT is slightly worse than your friends’, or if you identify with any of the above symptoms, it may be time to consider talking to professionals.
“To get a diagnosis, at least one of the main symptoms (mood swings, anger, 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, changes in appetite, sleep disturbances, feeling overwhelmed and physical symptoms such as migraines or sore breasts,” explains McHugh.
If you identify with any of the above symptoms, read on to find out what to do next.
Why is PMDD still so misunderstood in the medical world?
“Simple answer, the patriarchy!” said McHugh.
“It is so often dismissed as ‘normal PMS’. It can also be misdiagnosed as rapid-cycling bipolar disorder, due to its cyclic nature, but I think it’s being missed because professionals don’t ask about periods and often don’t make the link between mood and hormones.”
McHugh explains that PMDD was not included in medical education programs until recently and was not included in diagnostic manuals until 2022.
“84 percent of our social media followers have been fired by a doctor because their blood test was ‘okay,'” she said.
“PMDD is a cyclical hormone-based mood disorder, it is not a hormonal imbalance and will not show up on a blood test”.
How did doctors treat PMDD with so little research to go by?
In my case, it was suggested that I take antidepressants – but only for half the month.
“A lot of people get fired or put on birth control as an answer to all the gynecological problems,” McHugh said.
“With PMDD, the wrong birth control can make things worse — and doing nothing only reinforces the idea that it’s a character flaw or an overreaction.”
But PMDD Collective, together with a number of other organizations and professionals involved in the subject, hopes to change that.
“Our main objectives are to raise awareness and create change. For example, by looking at how we teach children about the menstrual cycle,” McHugh said.
“Menstrual health has always had a strong focus on fertility. Historically, sex education has been solely about ovulation and menstruation, failing 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 organization has just delivered its first awareness training to 100 UK-based doctors.
“We also hope to continue expanding our training for clinicians, educators and healthcare professionals.”
And if someone reading this article thinks they could identify with the symptoms of PMDD, what should they do?
“Organizations like ours are all about well-being. We have a monthly support group, our inbox is always open, and we create informative content on our social media channels,” said McHugh.
It still takes an average of 12 years for PMDD to be diagnosed and for people to receive the potentially life-saving support they need.
“The first step is to track your cycle,” advises McHugh. “Tracking physical, mental and emotional symptoms gives you insight into your cycle and helps you learn about all your physical and emotional shifts throughout the month.
“Then when you seek a diagnosis, bring at least three months’ worth of tracking data to your GP.”
“They may want to explore first-line treatments with you, such as the birth control pill or SSRI antidepressants.
“At the moment we recommend asking for a referral to a specialist gynecologist who is aware of PMDD. They can explore further treatment options, including chemical and surgical menopause.”
And, crucially, adds McHugh, “I would also recommend reaching out for support, whether it be from friends or family or our online community.
“PMDD can be an isolating condition. Having support and knowing you are not alone is incredibly powerful.”