Liz Shulman sometimes calls the days before her period a 'Category 5 luteal hurricane'. Photo / Sylvia Jarrus, The Washington Post
While there are a number of approved treatments for PMDD, patients say that finding the right regimen often requires months or even years of trial and error.
Hell week. Doom days. Brain screams.
These are some of the different ways women describe living with premenstrual dysphoric disorder (PMDD), a condition characterised by extreme moods in the days leading up to the period. But it’s more than just moodiness. People with PMDD may experience extreme irritability, depression, anxiety and rage so severe that it interferes with their lives. Some people with PMDD have suicidal thoughts.
Liz Shulman, 38, of Pittsburgh, sometimes calls the days before her period a “Category 5 luteal hurricane”.
“PMDD changes how the world feels around you,” said Shulman, who has worked as a web developer. “The me that I see myself as is driven, passionate, loves her friends and family. But the werewolf I become wants to die constantly.”
The Washington Post interviewed more than a dozen PMDD sufferers for insights into life with the condition. While their experiences vary, all agreed that PMDD is a life-altering condition, and the science lags behind the lived experience. Many sufferers say they find themselves withdrawing from life during the worst of it and constantly researching alternative treatments - conducting their own personal experiments on the painful quest for relief.
Looking back, Shulman says her PMDD probably began as a teenager, when she had “come-and-go anxiety and depression”. In college she asked a nurse about her anxiety in the days before her period and was told there was “no such thing”.
As she got older, Shulman experienced suicidal thoughts as her period approached - sometimes the phrase “kill yourself” repeated in her head. When a suicide attempt in 2021 forced her to step away from her job, a family member with PMDD suggested the condition might explain her symptoms, too. The diagnosis was confirmed by a gynaecologist when Shulman was 35, two decades after she started menstruating.
Since then, Shulman has taken antidepressant and anti-anxiety medication - but she still suffers. She copes with the support of her husband. When he notices her getting slower and quieter, he offers her a bag of M&M’s. “It’s like our silent way of saying, ‘Okay, it started. Take this, sit on the couch, watch a comfort show,’” she explained. “And he’ll do my house chores for that day.”
It’s not clear how many people suffer from PMDD - estimates range from 3 to 8% of the menstruating population. Researchers believe that PMDD occurs when the normal fluctuations of estrogen and progesterone during the menstrual cycle trigger an abnormal response in the brain. Symptoms arise in the “luteal phase,” which is the 14 days leading up to the period. With the arrival of the period, symptoms disappear, giving them a brief window of relief until the next luteal phase. Before being diagnosed, patients typically are asked to track their symptoms daily for at least two menstrual cycles.
“People may think it’s just feeling a little grouchy or teary before your period,” said Liisa Hantsoo, assistant professor in the Department of Psychiatry and Behavioural Sciences at Johns Hopkins University School of Medicine. “For people with PMDD, they know it’s a lot more serious than that.”
The primary treatment for PMDD is typically a type of antidepressant called a selective serotonin reuptake inhibitor (SSRI). Oral contraceptives also are sometimes prescribed. When symptoms are severe, hormone blocking drugs, including Lupron or Orilissa, may be used. For some patients, surgical removal of the ovaries is advised.
While there are a number of approved treatments for PMDD, patients say that finding the right regimen often requires months or even years of trial and error.
Susy Bayne, 35, of St Louis, was diagnosed with bipolar disorder when she was 13. Bayne had started to have crippling anxiety in the fifth grade, when she got her period. By eighth grade, she had attempted suicide and was sent to live in a group home.
After suffering for years, she connected the dots between her suicidal ideation and her period. At the age of 30, she started tracking her cycle and eventually sought out a PMDD diagnosis.
“I have two weeks of feeling like myself and feeling normal,” Bayne said. But halfway into her cycle, around ovulation, she can feel it coming. “It’s like a grip right in the centre of your chest,” she said. In those days, she experiences inexplicable crying jags or irritability and sensory overload.
Sometimes, reminding herself that her period is coming can help. But other times, “it’s white-knuckling it”, she said.
Bayne started taking Lupron in February to see if she would be a good candidate for an oophorectomy (ovary removal surgery). (She decided subjecting children to her mood swings would be too risky, she said.) But she experienced brain fog so severe that a 10-minute email took two hours. She struggled to string together sentences.
“I don’t know what other options there are at this point,” she said, her voice cracking. “That was supposed to be the nuclear option.”
When Bayne feels her symptoms coming on, she tells her husband that “the drop” happened. To avoid lashing out, she tells him she needs to “turtle”, and she hides in her home office wearing noise cancelling headphones.
Then there are temporal remedies. India Turner, 21, a college senior from Lake Charles, Louisiana, says she frontloads her schoolwork during her follicular phase (the first half of her cycle) because she knows she won’t be able to get anything done once her PMDD symptoms begin.
As a temporary solution, Anne Luebke, 47, of Waunakee, Wisconsin, arranged to take off work on her worst days of the month through the Family and Medical Leave Act, which provides eligible employees 12 weeks of unpaid leave. Not having to “fight through it”, she said, did far more for her than any medication. She is now recovering from surgery to remove her ovaries and uterus.
Nina B, who spoke on the condition that her full name not be used to protect her medical privacy, said she began creating art about her PMDD to help her cope with symptoms, which include anxiety, rage, irritability and depression.
“I didn’t exactly make it with the intention of making art,” said Nina, 33, of New Mexico. “It was more just to try to get my feelings out and find some relief. Now that I look at it, I’m like, ‘Wow! That’s pretty intense.’”
Faced with a lack of solutions, people with PMDD often resort to self-experimentation. For example, Bayne has received ketamine infusions every three months for the past five years. Bayne calls it her “saving grace” against ruminating suicidal thoughts. (Ketamine isn’t approved to treat PMDD, but it may be prescribed “off label” for treatment of mood disorders.)
Catzian Maris, 28, of Michigan, keeps a cabinet bursting with supplements to help manage the condition. In addition to magnesium, which some studies indicate is helpful for PMDD management, Maris has used supplements like boron, SAM-e, 5-HTP and inositol. Maris said SAM-e, a chemical found in the body that is also sold as a dietary supplement, brought the most relief, but the digestive side effects were unbearable.
“I can open my medicine cabinet and tell you all 50 things that I’ve tried,” said Maris, who is nonbinary and transgender. Maris suffered from PMDD symptoms at an early age but didn’t make the connection to their menstrual cycle until the age of 19 after starting testosterone treatments and noticing a sudden improvement in mood.
Relief through prescription drug treatments can prove elusive, too. Tabitha Theriault, 41, of Connecticut, takes Wellbutrin and Pristiq (both are antidepressants), BuSpar (an anti-anxiety drug), and Topamax (a seizure drug that can be a mood stabiliser). Still experiencing debilitating fatigue and suicidal ideation, she tried Slynd, an estrogen-free birth control pill, and when that didn’t work, Lupron. Now, she is preparing for surgery in October.
Emma Stoltzfus, 25, a video editor from Omaha, said that she has finally found a way to manage her symptoms with a combination of Effexor (an antidepressant), Vraylar (a drug that improves the effectiveness of antidepressants), Nextstellis (a continuous birth control pill), vitamins, exercise and therapy.
Many PMDD sufferers gather on internet forums such as Reddit to share knowledge and find validation in shared experiences.
Meredith Jones, 47, of California, was diagnosed four years ago after struggling with PMDD symptoms since getting her period at 14. Throughout her 20s and 30s, while raising two children, she battled suicidal thoughts and was diagnosed with a range of psychiatric illnesses. Then, at 43, she learned about PMDD from the International Association for Premenstrual Disorders (IAPMD) and suggested the diagnosis to her therapist.
“I had heard about it just vaguely and quickly dismissed it seven years prior, which frustrates me at this point,” she said. “But there was almost no education, and no doctor ever mentioned it.”
Jones joined an IAPMD support group, where she met an intergenerational group of five women to whom she talks every day. She also had a hysterectomy and oophorectomy. Despite suffering from a pelvic prolapse after the surgery, which left her with chronic pain, she said the procedure was worth it because it “100%” relieved her mood cycling and fatigue.
“My whole life was built around the fact that sometimes I don’t function,” she said. “I don’t have to live that way anymore.”
PMDD wasn’t included in the Diagnostic and Statistical Manual of Mental Illnesses, the main guide for mental health providers in the United States, until 2013.
Today, “without question”, more researchers are coming into the field, said David Rubinow, the chair emeritus of the department of psychiatry at the University of North Carolina at Chapel Hill School of Medicine. Rubinow indicated that the growing attention to women’s health will hopefully result in expanded funding for hormonal mood disorders.
Practitioners also say that more openness among young people about periods - and what’s normal and not normal - has helped raise awareness about PMDD.
Stephanie Edwards-Latchu, a nurse practitioner at UNC campus health, said patients often come to her after talking to friends. A patient might tell her: “I just thought this was normal, but they told me, ‘No, that doesn’t seem normal’.”
For many patients, being up front about the challenges of PMDD helps them cope. After speaking to The Post about her condition, Shulman apologised in advance. She knew her upcoming PMDD would sideline her for a few days.
“I will be under a blanket while the tornado goes over because there’s nothing I can do,” Shulman said. “I will not act out to anybody. I will not make any big life decisions. I will put off any important projects.
“Then I pick up the pieces, and I restart my life again.”
"I do feel kind of stuck. And I feel like a lot of people feel that way."