Beyond PMS: A Poorly Understood Disorder Means Periods of Despair for Some Women – KFF Health News

If you or someone you know is experiencing a mental health crisis, contact the 988 Suicide & Crisis Lifeline by dialing or texting “988.”

For the most part, Corey Lint was happy.

She worked as a software engineer by day and a part-time cellist by night, spending her free time inline skating and gardening and having long conversations with friends. But a few days a month, Lint’s mood would plummet. She would have sudden panic attacks and even suicidal thoughts.

She was diagnosed with anxiety and depression, but Lint, 34, who splits her time between St. Petersburg, Florida, and Tulsa, Oklahoma, had difficulty understanding her experience, a rift so deep that she felt like two different people.

“When I felt better, it was like I was looking at someone else’s experience, and that was incredibly confusing,” Lint said.

Then, in 2022, clarity emerged. She realized her symptoms were cyclical. Lint recognized a pattern in something her doctors hadn’t considered: her menstrual cycle.

The lack of investment in women’s health over decades has created gaps in medicine. The problem is so widespread that this year President Joe Biden called for a women’s health program to reduce the risk of heart disease. signed an executive order Advancing women’s health research and innovation.

Women are less likely than men to receive an early diagnosis of illnesses ranging from heart disease to cancer. Studies have foundand they are more likely to have Medical concerns dismissed Or misdiagnosed. Because disorders affecting women in particular have long been understudied, much about causes and treatments remains unknown.

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 disconnect between mental and reproductive health.

This sounds just like me , he thought.

What is PMDD?

Premenstrual dysphoric disorder, or PMDD, is a negative reaction in the brain to natural hormonal changes a week or two before menstruation. Symptoms are severe and can include irritability, anxiety, depression, and sudden mood swings. Other symptoms include fatigue, joint and muscle pain, changes in appetite and sleep patterns, with symptoms improving once bleeding begins.

Unlike the mild discomfort of premenstrual syndrome, or PMS, the effects of premenstrual dysphoric disorder can be life-altering. It is estimated that those suffering from it can suffer greatly. Disability of about four yearsCumulatively, throughout their lives.

Although researchers estimate that dysphoric disorder affects about 5% of menstruating women — about the same percentage as women with diabetes — the condition is still relatively unknown, even among health care providers.

in 2022 Survey of PMDD patients In a study published in the Journal of Women’s Health, more than a third of participants said their family doctors knew little about premenstrual disorder or its treatment. Nearly 40% said the same was true of their mental health physicians.

Reproductive mental health has been sidelined as a specialism, it said. Jacqueline RossA clinical psychologist who researches premenstrual disorders as the Associate Director CLEAR Lab at the University of Illinois-ChicagoOnly a few health care providers are trained or aware of such disorders, Ross said.

“If you’re not considering the menstrual cycle, you run the risk of being misdiagnosed and not knowing what’s really going on,” Ross said.

That’s what happened to Jenna Tingum, a 25-year-old resident of Tampa, Florida, when she was a premed student at the University of Florida and had panic attacks and suicidal thoughts. It wasn’t until her college girlfriend read about PMDD online and noticed that Tingum’s symptoms increased in the days before her period that Tingum spoke to her gynecologist.

“I don’t think I would have ever been able to put the pieces together,” Tingham said.

Suicide Risk and Treatment

Because so few researchers study the condition, the cause of PMDD remains a mystery, and treatments are limited.

It wasn’t until 2013 that the disorder was added to the Diagnostic and Statistical Manual, the handbook used by medical professionals in the U.S. to diagnose psychiatric conditions. PMDD was officially recognized by the World Health Organization in 2019, though mentions of it in the medical literature date back to the 1960s.

Defining the disorder as a medical condition faced initial resistance from some feminist groups, who were wary of giving credibility to stereotypes about PMS and menstruation. But Ross said patients should be taken seriously.

One study found that 72% of respondents suffered from this disorder He said he had thoughts of suicide And 34% said they had attempted suicide, compared with 3% in the general population.

Marybeth Bohn lost her daughter, Christina Bohn, to suicide in 2021. Just months before her death at age 33, Christina had linked her extreme stress to her menstrual cycle — something no doctor had asked, Bohn said. Now Bohn, who lives in Columbia, Missouri, works with medical and nursing schools across the country to change curriculum and encourage doctors to ask people in mental health emergencies about their premenstrual symptoms and cycles.

“We need more research to understand how and why these responses to hormones occur,” Ross said. “There’s still a lot of work to be done.”

Although doctors have not adopted a universal method for relieving symptoms, three main treatments have emerged. Rachel CarpenterMedical Director of Reproductive Psychiatry at the University of Florida-Jacksonville College of Medicine, Dr.

Selective serotonin reuptake inhibitors, the most common form of antidepressant medication, are the first line of attack, Carpenter said. Some patients take the medication regularly; others only start taking it a week or two after symptoms appear.

For some patients, hormonal birth control can reduce symptoms by controlling or stopping the secretion of certain hormones.

Finally, talk therapy and chakra awareness can help patients build mental resilience for the tough weeks ahead.

Sandy MacDonald, who co-founded it International Association for Premenstrual DisordersA key resource for patients and physicians, she said peer support is available through the nonprofit, but funding for research and education is still lacking.

She hopes the White House’s new initiative to advance women’s health research will open new avenues.

let’s talk about periods

Lint and Tingham, who were diagnosed by medical professionals after learning about the disorder themselves, both said the lack of conversation about menstruation caused them to delay seeking care.

Lint doesn’t remember menstruation being talked about much in elementary school; it was often the subject of jokes, used to dismiss women.

“For a long time I thought, ‘Well, this happens to everybody, right?'” Lint said of her symptoms. “Has a doctor ever asked me what my symptoms are? No, absolutely not. But we’re talking about a quarter of my life or more.”

Brett Butchart, a former University of Florida athlete who took some time off campus as her symptoms worsened, said that when doctors ask questions, it feels like checking boxes: “The conversation ends there.”

Buchert, who has a bachelor’s degree in psychology and now lives in Boulder, Colorado, said it was important to understand what was happening to her and Becoming aware of your cycle This has helped him to take charge of his situation.

Lint and Tingham agreed.

Lint said that even though she struggles to find medication that provides relief, tracking her menstrual cycle has helped her plan according to her symptoms. She has fewer commitments in the week before her period. She also has more time to take care of herself.

He also found solace in it Reading others’ stories “I am living with this condition,” she said.

“It’s helped me understand the extremes,” Lint said. “There’s nothing wrong with me as a person. I’m not crazy; this is something that’s legitimately happening to me. It’s helpful to know I’m not alone.”

This article was produced through a partnership between KFF Health News and the Tampa Bay Times,