The Menstrual Mood Disorder You’ve Never Heard About

Ever since she was a teenager, Tanya knew her mood swings were a problem. She had periodic bouts of anger and depression that left her wanting to die. Her life was a roller coaster of highs and lows but doctors couldn’t figure out what was wrong. Five years ago, she decided she’d had enough. She wanted to end her life.

Tanya managed to talk herself out of it and instead did some googling. She stumbled across a website about premenstrual dysphoric disorder (PMDD), a menstrual mood disorder, that impacts roughly 3 to 8% of menstruators. PMDD means having severe and debilitating mood swings right around one’s period. Around a third of people with PMDD have attempted suicide, and over  70% have regular suicidal ideation.

“It just hit me,” Tanya told me. “I went through my life and so many moments made sense.” She called her doctor the next day. He sent her to get tested for diabetes.

Tanya finally managed to get a PMDD diagnosis in 2019 at the age of 26, but she was haunted by the question: Why had she never heard of PMDD before and why was it so hard to get a diagnosis?

Although research shows suicidal ideation is linked to specific times during the menstrual cycle, today most people still haven’t heard of PMDD, including doctors. According to a 2022 survey of PMDD patients, over a third said their general practitioners had no knowledge of premenstrual disorders, and about 40% said their mental-health-care providers had no knowledge of premenstrual disorders. But PMDD has been around since periods have been around and we’ve known about it for nearly a century.

So why aren’t we getting people the help they need? The answer, as history shows, is more complicated than we think.

While the menstrual cycle has been notoriously understudied, the first papers on PMDD appeared in 1930s. In the 1950s British physician Dr. Katrina Dalton began studying PMDD—or “premenstrual syndrome” as she called it, and opened a clinic in London. Still, PMDD mostly flew under the radar until 1980, when Dalton served as a medical expert for three women accused of crime. During the trials Dalton showed that the women committed the crimes right before their period, and that their symptoms disappeared with treatment. She was able to get them a reduced sentence.

Overnight there was a media boom around PMS. The magazine Glamour even polled readers about the validity of using PMS as a legal defense: (24% were for, 71% against, and 5% unsure). As a result, the growing awareness around PMS bled over to the medical community. In 1984 psychiatrist Robert Spitzer proposed PMS should be added to the Diagnostic and Statistical Manual of Mental Disorders (DSM), the handbook used by doctors to diagnosis mental health problems. Spitzer was the chair of the committee revising the third version of the DSM, and he’d been getting several invites to conferences about PMS. Adding PMS to the DSM meant that the medical community was recognizing it as a formal disorder that could be diagnosed and treated.

Read More: 5 Foods That Ease PMS Symptoms

However, experts were divided on where to draw the line between PMDD (the severe, debilitating mood swings) and PMS (garden variety grumpiness and irritability). When the Washington Post asked experts about the prevalence of PMS in 1984, estimates ranged from 3% to 90% of women. In a sense, both of these estimates were true: only a few people have severe symptoms, but up to 90% of people do have mild symptoms before their period. It became clear that experts were conflating PMDD and PMS and this was reflected in popular culture. Suddenly, anyone who had a period was seen as unstable. Products with sexist jokes abounded, such as greeting cards that read “What’s the difference between a woman with PMS and a terrorist? Answer: You can negotiate with a terrorist.”

Controversy erupted. A group of feminists spearheaded a campaign to stop PMDD’s inclusion in the DSM. They argued that including PMDD would be tantamount to calling menstruation a mental illness. Much of their reaction was rooted in the atmosphere of the ‘70s and ‘80s as women were fighting for gender equality on several fronts from work to reproductive rights. In the 1970s, for the first time, over half of women were working outside the home. The Supreme Court ruled to protect the right to abortion in Roe v. Wade. However, this equality was also precarious and under threat—conservatives defeated the Equal Rights Amendment which would have prohibited gender discrimination. For feminists, PMDD and the sexist jokes it generated seemed to be another attempt to discredit women and chip away at the progress feminists had made for women’s rights.

One of PMDD’s major critics, Dr. Joan Chrisler, attended a lecture in the 1970s, early on in her career on why there were no great women artists or novelists. The conclusion: women’s creativity declines when they are menstruating. This inspired Chrisler to devote her career to fighting menstrual stigma. In an era rife with sexism, adding PMDD to the DSM set off alarm bells.

Read More: A History of How Employers Have Addressed Women’s Periods

To further complicate matters, in the early 2000s, drug manufacturer Eli Lilly stuck its finger in the pie. Eli Lilly’s patent on its blockbuster drug Prozac, which treated depression, was set to expire and it’s share prices had tanked. The company desperately needed a new market that would buy Prozac.

Eli Lilly landed on PMDD as their next likely market. Early studies already suggested that Prozac could treat PMDD, but the problem was that experts were still debating whether PMDD belonged in the DSM as an official diagnosis at all. Undaunted, Eli Lilly embarked on a massive campaign to market Prozac to people with PMDD. It sponsored a round table discussion on Prozac’s effectiveness for PMDD, which found that at least 60% of patients with PMDD respond to antidepressants. It repackaged Prozac as “Serafem” a play on the word “seraphim”, the angels who guard the throne of God. If that wasn’t enough to drive home the point, they changed Prozac’s green and yellow pills to pink and purple. Finally, they rolled out a series of ads that suggested any woman who was feeling grumpy should consider medication. The ads didn’t distinguish between PMDD and PMS. Rather, they imply any sign of irritability in women should be treated.

This unleashed another wave of furor. Feminists were insulted—and rightfully so. The last thing the women’s movement needed was a drug companies suggesting a woman’s anger is a mental health condition. The media had a field day writing about drug companies “inventing” new diseases and marketing drugs without diagnoses. (Tragically, Prozac actually works on PMDD. Studies have found SSRIs like Prozac can relieve PMDD symptoms in up to twelve hours, even though it takes weeks to work for anxiety and depression.)

In some ways the feminists lost their battle. PMDD eventually did become a diagnosis in the DSM in 2013, nearly three decades after it’d been first debated in the ‘80s. In other ways, they won the war. Dr. Tory Eisenlohr-Moul, a premenstrual mood disorder researcher at the University of Illinois Chicago, estimates that the backlash around PMDD set care back by 10 to 15 years. She pointed out there’s been a chilling effect on the conversation around the link between menstruation and mood. Doctors are afraid to bring it up, because they don’t want patients to think they are sexist.

Yet, in reality, the biggest victims of the fight over PMDD’s existence are people who have PMDD and the people who love them. Today, thousands of people still suffer because they don’t know they have PMDD.

Tanya’s PMDD diagnosis changed her life. While she elected not to try medication, the diagnosis alone helped her understand her breakdowns, and helped her explain what was going on to family and friends. She decided to train in psychotherapy so she can help other people understand PMDD. “My tutor has been a counselor for 10 years and still hasn’t heard of PMDD,” she said. “I want to help people work through this pain.”