Millions of women in the US suffer from this menstrual disorder. Why don’t we know more about it?

For people with premenstrual dysphoric disorder (PMDD), the premenstrual period is a nightmare, filled with angry storms, clouds of depression, and waves of anxiety. Then everything disappears, it will come back next month. More than 70% of people with PMDD have thought about suicide, and one-third have attempted it.

For most people, treatment is straightforward and effective: birth control or an antidepressant. However, few people have heard of PMDD, including doctors, so many have been neglected. In a 2022 study, more than one-third of PMDD patients said their doctors had never heard of PMDD, and 40% said their mental health doctors had never heard of it.

Worse, there are still many fundamental questions about PMDD that remain unanswered. What causes PMDD? Is there more than one type? Why do treatments work for some people but not for others?

A new paper from Liisa Hantsoo at Johns Hopkins University and Jennifer Payne at the University of Virginia sheds light on why we know so little about PMDD. They found PMDD research receives 80% less government funding than postnatal depression, even though it affects five times as many people.

Hantsoo and Payne ran the numbers. PMDD affects 3 to 8% of all menstruators. Postpartum depression affects 12% of women who give birth each year. If you do the math using a conservative estimate of 3%, PMDD affects 2.3 million women in the US each year, and postpartum depression affects 440,130.

But Hantsoo and Payne also found that there are only nine studies currently funded on PMDD while there are 139 on postpartum depression.

“I go to a lot of conferences about women’s mental health,” said Hantsoo. “There is a lot of focus on mental health when a person is pregnant, but there is nothing about the mental health of menstruation or menopause. . . I was curious about the prices.” In terms of dollars, PMDD received $11 million, and postpartum depression studies were awarded $60 million.

In their paper, Hantsoo and Payne also point out that the number of people with menstrual disorders extends beyond PMDD. There are many people who may have PMS symptoms that are not severe enough to count as PMDD, but are still debilitating and deserve treatment and further research.

In addition, depression in women is often exacerbated by the menstrual cycle: At least 60% of women with depression find their symptoms worse before menstruation. However, the researchers noted that many journals tend to publish studies that focus on reproductive health and pregnancy.

“Postpartum depression is important but there is more to women’s mental health than postpartum depression,” said Hantsoo. “There are many other things that we have to look at.”

A spokesperson for the National Institute of Mental Health (NIMH) noted, “NIMH is committed to conducting and supporting research to better understand and address mental illnesses, including PMDD,” and provided a link to one study. (It’s worth noting that some of the most influential research on PMDD comes from NIMH research labs.)

One reason behind the lack of research could be the plumbing problem. If people don’t know about PMDD in the first place, a few researchers may propose PMDD research projects at NIMH. NIMH did not provide numbers on how many PMDD research proposals it receives compared to postpartum depression projects, but Hantsoo speculates that postpartum depression proposals far outnumber PMDD proposals. After all, if you don’t know something exists, how can you suggest reading it?

That might make sense. But it’s cold comfort to the more than two million women with PMDD who battle their emotions month after month to hold on to their relationships, their livelihoods, and their lives.