In January 2021, Michele Petersen, then 25, began to not feel like herself.
These unexpected emotions bled into other aspects of her life. She teared up at work while telling her boss about something she was passionate about, for example.
Then she started noticing something, she said: These states of heightened emotions came around the beginning of the month. So she made a calendar and drew a little “X” when she was annoyed at her boyfriend, and a check mark if she felt fine.
It took a couple of months, but it began making sense to her.
“I can’t remember when I started connecting it to my menstrual cycle,” Petersen said. “But when I finally did, it just clicked for me.”
Petersen would later learn that she is one of an estimated 5.5 percent of menstruating people who have premenstrual dysphoric disorder, or PMDD, a much more severe form of premenstrual syndrome (PMS). People with PMDD have a sensitivity to the normal fluctuations in estrogen and progesterone in their menstrual cycle, which can trigger mood symptoms, including depression, anxiety, irritability, sensitivity to social rejection and hypersensitivity to their environment. Similarly to PMS, these symptoms start during the luteal phase and fade when their period ends.
The Washington Post heard from more than 70 people who said they have PMDD. Many said it was a long journey to learn more about the disorder, in no small part because of the stigmatization of reproductive health and menstruation specifically. The symptoms they described include depression, anxiety, dark thoughts and suicidal ideation in the days and weeks before their periods. Some said it feels like they become a totally different person during their “bad weeks”: They feel impatient and irritable, they said, picking fights with people close to them when they otherwise wouldn’t. And in the more extreme cases, some said they had mistakenly believed they had or been misdiagnosed with bipolar disorder or borderline personality disorder.
“People with PMDD can expect anywhere from two to three days to a whole 14 days of symptoms each month,” said Tory Eisenlohr-Moul, a clinical psychologist and scientist specializing in how the menstrual cycle influences emotions and behaviors in people with hormone sensitivities.
Eisenlohr-Moul said the biggest differentiating factor between PMS and PMDD comes down to the emotional symptoms. PMS generally encompasses physical symptoms, such as bloating and fatigue. But when emotional symptoms are distressing or impairing your daily life, it’s a signal that PMDD might be at play, Eisenlohr-Moul added.
According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), patients must have at least five symptoms — one of which must be “marked” affective lability, irritability or anger, a depressed mood, or anxiety — during most menstrual cycles in the past year to meet criteria for a PMDD diagnosis. Eisenlohr-Moul also pointed out that chronic mental health conditions may be connected to PMDD: Research has found that women with PMDD may be at greater risk of having or developing other mental health disorders.
The impacts of PMDD can be severe: A study from this year, co-authored by Eisenlohr-Moul, found that 34 percent of people with PMDD attempt suicide. The study also found that, on average, patients waited 12 years and saw at least 6 providers before they received an accurate diagnosis of PMDD. (Individuals who self-reported PMDD symptoms were invited to take the survey, and of the 2,689 self-selecting survey takers, 23 percent reported a clinical PMDD diagnosis — these analyses were based on those 23 percent of respondents.)
In terms of treatments for PMDD, a psychiatrist may prescribe a patient SSRIs or hormonal birth control to help with symptoms. But mental health is complex — there is no one-size-fits-all solution, doctors say. And many of the people with PMDD who wrote to The Post expressed exhausting processes of seeing different doctors, trial-and-error with medications, and negotiating with health insurance.
For Nikki Wertheim, a 34-year-old living in Long Island, N.Y., it took sessions with a therapist back in 2016 to start connecting the dots.
“We noticed that I would get really, really suicidal for like a week or two, and then it would vanish,” they said. “But then there was one session we had where I was like, this is happening in conjunction with my cycle.”
Others who reached out to The Post had not yet been diagnosed by a medical professional. Instead, they said they self-diagnosed after recognizing the general relief they’d feel after their periods arrived. Many described feeling hopeless or experiencing panic and sensory overload leading up to their periods.
That’s what would happen to Morgan Chesley, a 26-year-old living in Washington state. For eight to 10 days every month, her luteal phase would be “terrifying,” she said: She felt out of control and impulsive, and suffered from panic attacks and suicidal thoughts.
“Then I’d start bleeding. Instant relief,” she said. “It’s crazy that the heavy, painful periods I experienced became such a refuge. I grew to almost love the physical discomfort of my period, because it meant I had my life back.”
For many people The Post heard from — regardless of whether they self-diagnosed or were medically diagnosed with PMDD — their experiences highlighted the stigmatization inherent in women’s health, and particularly menstruation.
PMDD was officially recognized as a psychiatric disorder in 2013. But as Eisenlohr-Moul describes, there was a drawn-out fight over whether to include it in the DSM-5, largely from psychiatrists who were concerned that acknowledging the disorder would further stigmatize women and their functionality around and on their periods.
That debate is part of a long legacy of some feminists worrying that highlighting PMS ultimately hurts women.
“On the one hand, feminists acknowledge the importance of women’s complaints receiving medical attention so that women’s reported discomforts are seen as legitimate and not as a product of their imagination,” academic Susan Markens wrote in her 1996 report “The Problematic of ‘Experience’: A Political and Cultural Critique of PMS.” “On the other hand, there is fear that if the syndrome gains legitimacy, women will be seen as emotional, irrational, and unreliable, victims of their own biology, and once again will be reduced to their ‘raging hormones.’ ”
Stigma comes into play in other ways, too. For Wertheim, the patient who figured out they had PMDD with their therapist, being transgender and nonbinary has only complicated how they navigate their menstrual disorder.
As they put it: “PMDD is so feminized.” When it comes to gender-affirming medical care, some doctors might avoid talking about periods and menstrual cycles so as to not “trigger” nonbinary patients. “[But] I can’t not talk about it because it’s been such a huge part of my life and my mental health journey,” Wertheim said. “It’s hard to not feel isolated in something that is already very isolating.”
Heaven Berhane, a 33-year-old living in New York City, started figuring out she was experiencing PMDD on her own: After an especially emotionally destructive episode, she said, she started tracking her periods and acquainting herself with her emotional patterns. It’s also been a lonely experience for her, self-diagnosing and trying to advocate for herself in the doctor’s office.
“There’s this trope of the strong Black woman,” Berhane said. “At one point I was like, am I weird? Am I the only Black girl out here who has [PMDD]?”
It can also be an agonizing journey for people whose loved ones have PMDD. As with many mental health disorders, family members and friends can feel helpless and desperate for some kind of solution.
That was the case for Marybeth Bohn, the mother of Christina Bohn Rudd, who suffered from PMDD-induced psychosis, depression and anxiety.
“Two weeks out of the month, she’d feel good about herself and then two weeks out of the month, it was like, where did she go? Where’s our daughter?” Bohn said.
After Christina died by suicide in November 2021 at 33, Bohn made it her mission to raise awareness about the disorder. She designed what she calls “Christina’s Questions” — three questions that she wishes doctors would always ask their menstruating patients.
“When was your last period? When are you expecting the next period? And what is PMS like for you? [These questions] could save lives,” Bohn said. “They could trim the time. They could shave off years of suffering and get right down to it.”
If you or someone you know needs help, visit suicidepreventionlifeline.org.