For the most part, Cori Lint was happy.
She worked as a computer engineer by day and as a part-time cellist by night, filling her free time with rollerblading, gardening, and long chats with friends. But a few days a month, Lint’s mood would deteriorate. Panic attacks would strike suddenly. Suicidal thoughts, too.
She had been diagnosed with anxiety and depression, but Lint, 34, who splits her time between St. Petersburg and Tulsa, Oklahoma, struggled to understand her experience, a divide so extreme she felt like two different people.
“When I felt better, it was like I was thinking about someone else’s experience, and it was incredibly confusing,” Lint said.
Then, in 2022, she realized her symptoms were cyclical. Lint recognized a pattern in something her doctors hadn’t considered: her periods.
For decades, a lack of investment in women’s health has created gaps in medicine. The problem is so widespread that this year, President Joe Biden signed an executive order aimed at advancing research and innovation in women’s health.
Women are less likely than men to be diagnosed early for conditions ranging from heart disease to cancer, and they are more likely to have their medical problems overlooked or misdiagnosed. Because disorders that specifically affect women have long been understudied, much remains unknown about their causes and treatments.
This is especially true when it comes to the effects of menstruation on mental health.
When Lint turned to the internet for answers, she discovered a debilitating condition at the intersection of mental and reproductive health.
That sounds like me, she thought.
What is TDPM?
Premenstrual dysphoric disorder is the brain’s negative reaction to the natural hormonal changes that occur one to two weeks before your period. Symptoms are severe and can include irritability, anxiety, depression, and sudden mood swings. Other symptoms include fatigue, joint and muscle pain, and changes in appetite and sleep, with symptoms improving once bleeding begins.
Unlike the mild discomfort of premenstrual syndrome, or PMS, the effects of PMDD are life-altering. By one estimate, sufferers can endure nearly four years of disability over their lifetime.
Although researchers estimate that dysphoric disorder affects about 5 percent of people who menstruate, about the same percentage of women with diabetes, the condition remains relatively unknown, even among health care providers.
In a 2022 survey of PMDD patients published in the Journal of Women’s HealthMore than a third of participants said their family doctor had little knowledge about premenstrual dysphoric disorder (PMDD) or how to treat it. About 40% said the same was true of their mental health therapist.
Michael Noble Jr.
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for KFF Health News
Reproductive mental health has been marginalized as a specialty, said Jaclyn Ross, a clinical psychologist who studies premenstrual disorders as associate director of the CLEAR Lab at the University of Illinois at Chicago. Only select health care providers receive training or are even aware of the disorders, Ross said.
“If you ignore the menstrual cycle, you risk misdiagnosing and missing what’s really going on,” Ross said.
That’s what happened to Jenna Tingum, a 25-year-old Tampa resident who experienced panic attacks and suicidal thoughts while she was a medical student at the University of Florida. It wasn’t until her college girlfriend read an article about PMDD online and noticed that Tingum’s symptoms had intensified in the days leading up to her period that Tingum spoke to her gynecologist.
“I don’t think I could have ever put the pieces together,” Tingum said.
Suicide risk and treatment
Because few researchers study the condition, the cause of PMDD remains an enigma and treatments remain limited.
It wasn’t until 2013 that the disorder was added to the Diagnostic and Statistical Manual, the manual used by health professionals in the United States to diagnose psychiatric disorders. PMDD was officially recognized by the World Health Organization in 2019, although references in the medical literature date back to the 1960s.
Defining PMS as a condition was quickly rejected by some feminist groups who feared it would lend credibility to stereotypes about PMS and periods. But Ross said patients need to be taken seriously.
In one study, 72% of people with the disorder reported having suicidal thoughts in their lifetime. And 34% reported having attempted suicide, compared to 3% of the general population.
Marybeth Bohn lost her daughter, Christina Bohn, to suicide in 2021. It wasn’t until the months before her death at age 33 that Christina made the connection between her extreme distress and her menstrual cycle — no doctor had asked her about it, Bohn said. Now, Bohn, who lives in Columbia, Missouri, works with medical and nursing schools across the country to change curricula and encourage doctors to ask people experiencing mental health emergencies about their symptoms and premenstrual cycles.
“We need to do more research to understand how and why these hormone reactions occur,” Ross said. “There’s still a lot more to do.”
Although doctors have not yet adopted a universal approach to treating the symptoms, three main treatments have emerged, said Rachel Carpenter, medical director of reproductive psychiatry at the University of Florida-Jacksonville School of Medicine.
Selective serotonin reuptake inhibitors, the most common form of antidepressants, are the first line of attack, Carpenter said. Some patients take the medication regularly, others only for the week or two after symptoms appear.
For some patients, hormonal birth control can relieve symptoms by controlling or preventing the release of certain hormones.
Finally, talk therapy and cycle awareness can help patients develop mental resilience for difficult weeks.
Sandi MacDonald, co-founder of the International Premenstrual Disorders Association, a leading resource for patients and clinicians, said peer support is available through the nonprofit, but funding for research and education remains difficult to come by.
She hopes the White House’s new initiative to advance women’s health research will open doors.
Let’s talk about the rules
Lint and Tingum, who were diagnosed by health professionals after discovering the disorder on their own, said a lack of conversation around periods contributed to the delay in their care.
Lint doesn’t remember talking about periods much in elementary school; they were often the butt of jokes, used to put women down.
“For a long time I thought, ‘This happens to everyone, right?’” Lint said of his symptoms. “Has a doctor ever asked me what my symptoms were? No, absolutely not. But we’re talking about a quarter or more of my life.”
Brett Buchert, a former University of Florida athlete who has been away from campus because of the severity of her symptoms, said that when doctors ask questions, it sometimes feels like boxes are being checked: “The conversation ends there.”
Buchert, a psychology major now living in Boulder, Colorado, said understanding what’s happening to her and being aware of her cycle has helped her manage her condition.
Lint and Tingum agreed.
Although Lint struggles to find medication that provides relief, tracking her cycle has allowed her to plan around her symptoms, she said. She makes fewer commitments the week before her period. She sets aside more time for self-care.
She also found comfort in reading the stories of others living with the disease, she said.
“It’s helped me deal with the extremes,” Lint said. “There’s nothing wrong with me as an individual. I’m not crazy; this is something that’s really happening to me. It helps me to know I’m not alone.”
How to get help with TDPM
- Visit the International Premenstrual Disorders Association website for informative videos, self-assessment tools, and peer support.
- Track your symptoms using a free IAPMD symptom tracker or the Me v PMDD app for Apple and Android. Symptoms must be present for at least two menstrual cycles to be clinically diagnosed.
- Benefit from peer support, available through various Facebook groups for people with PMDD and their loved ones.
- If you or someone you know may be experiencing a mental health crisis, contact the Suicide & Crisis Lifeline by calling or texting 988.
This article was produced through a partnership between KFF Health News and the Tampa Bay Times.
KFF Health News is a national newsroom that produces in-depth journalism on health issues and is one of the core operating programs of KFF – an independent source of research, polling and journalism on health policy. Learn more about KFF.
