CHAPTER ONEThe PMDD Problem
It is 3:00 AM in the early spring of 2020, the beginning of the pandemic, and I am carving stars into my leg with a butcher’s knife. Or, at least, I’m trying to. Skin is surprisingly tough, knives are surprisingly painful, and a butcher’s knife may not have been the right choice for the job at hand. The most I’ve been able to achieve are a few scratches, which fills me with a vague sense of embarrassment. If you’re going to crack, you should at least do it properly.
The day didn’t start promisingly. I’d woken up angry and depressed for no conceivable reason. My relationship was fantastic: I’d somehow found a man willing to listen to me blather on about Machiavelli and manga, flattering sweatpants, and my latest writing project. My career was going reasonably well: my boss and I had just submitted the final manuscript of our book on trust and business for publication. My childhood had zero trauma, unless BC Calculus and AP Physics count. Even then, my teachers let me off with a B-plus and nurturing advice: don’t become a scientist.
All day I’d vacillated between fighting with my boyfriend, crying, and wrestling with a hurricane of anxiety and rage that spun me around and around. My boyfriend had gone to sleep, exhausted from trying to calm me down while also trying to figure out why I suddenly hated him. The pain of cutting up my leg was at least soothing. It blunted the depression, leaving me calm.
My boyfriend, however, did not feel calm when he woke up and found me on the couch with a giant knife. When he took the knife away, I had nothing to take my mind off the depression. I started slapping myself. He yelled at me to stop. When that didn’t work, he sat on me. I wriggled away and started slapping myself again. Finally, after two hours, I relented, exhausted. I had purple shadows on my jaw, a starburst across one eye, and bruises up and down my arms. Part of me was impressed. I don’t have the upper-body strength to do a push-up, but I managed to pack an excellent punch. The other part was horrified. I looked like a victim of domestic violence. Except the abuser was me: I had done this to myself.
Ever since my teens, I’ve been prone to fits of depression and anger right before my period. For half of the month, I’m deadline obsessed, even-keeled, and incredibly boring. At parties, I drink mocktails and huddle in the corner, but mostly I don’t go to parties because I’d rather organize my bookshelf or shoe collection. For the other half of the month, I’m still deadline obsessed, but also depressed or angry.
If I’m depressed, the typical routine is to clutch my boyfriend around the middle, then we’ll trot off to the bakery and buy cakes. At home, I’ll sob into those cakes. I love depression. I love depression because the alternative is so much worse. If I’m not depressed, I’m angry.
If I’m angry, my boyfriend and I will have a knock-down, drag-out fight. I’ll scream at him to pack up his things because he obviously doesn’t love me, we’re done, we’re over, and I never want to see him again. If it’s really bad, I’ll throw things: the contents of my desk, everything on my desk, the desk itself.… (Actually not the desk itself, see also limited upper-body strength.) My only comfort is that I’m not physically abusive with anyone except myself—and, even so, I worry that one day the thin thread of control I retain that whispers don’t hurt anyone physically except yourself will snap. What little self-respect I still have would completely melt away.
For most of my life, I assumed I was simply a bad person because, no matter how much I wanted to, I could never control my spiraling emotions. No matter how much I vowed I’d do better and be a better person next month, I failed. What I didn’t know for years, and would find out a few weeks later, was that I wasn’t a bad person. I was ill. I have a premenstrual mood disorder called PMDD: premenstrual dysphoric disorder.
PREMENSTRUAL MOOD DISORDERS 101
I had never heard of PMDD, or premenstrual mood disorders in general, before I was diagnosed in 2020. I’d heard of PMS (premenstrual syndrome). My understanding of PMS was based on a few health classes, a couple of conversations with friends, and some light scrolling through cheerfully worded health websites. In short, as I understood it, PMS means a few people might be grumpy or feel emotionally sensitive a couple of days before their period, or they might struggle with cramps, but the majority of people experience few if any symptoms. Avoid junk food, cut caffeine and alcohol, do some yoga, and go for a jog, and you’ll be just fine. I did all these things and I never was.
There was very little information on PMDD, so shortly after my diagnosis, I contacted Dr. Tory Eisenlohr-Moul, one of the foremost experts on menstrual mood disorders. I conducted a series of interviews with her, culminating in a visit to her lab. Dr. Eisenlohr-Moul, who told me to call her Dr. Tory, is an associate professor of psychiatry at the University of Illinois Chicago, where she researches premenstrual mood disorders. In addition to running her lab, she’s the chair of the International Association for Premenstrual Disorders’ clinical board and frequently conducts webinars for other clinicians and researchers.
Dr. Tory has a septum piercing and crinkly blond hair that reminded me of ramen. We walked down the wide avenues of UIC’s campus as she explained both the nuts and bolts of PMDD and her work. We stopped by the ivy-covered building where people come for research studies.
Inside, it looked just like a doctor’s office, right down to the lines of wood chairs upholstered in teal cloth in the waiting room. Later, we visited the wet labs, where she sends blood samples to be analyzed. The winding corridors of the lab open up into rooms filled with benches for running experiments and equipment: giant freezers full of blood samples and bulky mass spectrometers that can analyze hormone levels. Dr. Tory packed entire seminars about the biology and history of premenstrual mood disorders into her answers, which left me scrambling to take notes, but she was always patient with my questions, even if they meant going far back to science basics like what exactly are hormones?
Some quick biology 101. Hormones are the body’s chemical messengers. They tell different parts of the body to turn certain processes on or off. Estrogen and progesterone, the two primary hormones associated with menstruation, are linked to sexual and reproductive development, but also to the regulation of cholesterol levels, bone density, mood, cardiovascular health, and skin.1 During the menstrual cycle, these two hormones are in flux.
Menstrual cycles vary from twenty-one to thirty-five days, but for the sake of simplicity, I’ll assume a typical menstrual cycle is twenty-eight days. The first half is known as the follicular phase: on the first day, bleeding starts because the uterus is in the process of shedding its lining, which can last for about a week; estrogen and progesterone are at their lowest. During days 6 to 14, estrogen levels in the body rise and the uterus starts rebuilding its lining so a potential fertilized egg can implant.2 Around day 14 (give or take a few days), one ovary will release an egg, an event called ovulation.3 Estrogen levels drop right after ovulation.4 During the second phase, called the luteal phase, estrogen and progesterone increase until about day 21 to thicken the lining of the uterus; then they drop if there’s no fertilized egg present. Around day 28, bleeding begins and the cycle starts again.5 These time frames vary from person to person, but the pattern is roughly the same—the uterine lining builds up, estrogen rises, ovulation happens, estrogen falls, both estrogen and progesterone levels increase and then fall, and then bleeding occurs as the lining is shed.
PMS, or premenstrual syndrome, refers to any of the changes the body goes through during the cycle. The phrase premenstrual syndrome is a bit of a misnomer. PMS can occur any time, usually after ovulation and up to five days after bleeding occurs.6 Moreover, PMS isn’t just about feeling grumpy and bloated. Over 150 PMS symptoms have been identified, including bloating, headaches, clumsiness, mood swings, and sleep disorders.7 The menstrual cycle can exacerbate underlying medical conditions, which means symptoms are worse during the luteal phase of the cycle: about 40 percent of women with asthma have reported premenstrual exacerbation of asthma,8 50 percent of migraines in women are related to menstruation,9 and up to a third of women with epilepsy have reported having more seizures shortly before or during menstruation.10 This stands to reason, given how many different body processes progesterone and estrogen are linked to.
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PMDD, WHICH IS what I have, means having severe mental and physical symptoms before your period. The Diagnostic and Statistical Manual of Mental Disorders (see Appendix C), the handbook that mental health professionals use to make a diagnosis, requires experiencing at least one symptom from this list:11
increased mood swingsanger/irritabilitydepressionanxietyAnd at least one symptom from this list, for a total of at least five symptoms:
decreased interest in activitiesdifficulty concentratinglethargymarked change in appetitemarked change in sleeping patternssense of being overwhelmedphysical symptoms such as breast tenderness, joint or muscle pain, bloating, or weight gainTo count as PMDD, these symptoms must be severe enough to cause distress or interfere with someone’s work or education or relationships. The symptoms must also appear the week before menstruation and then disappear the week after menstruation finishes.12
At times, people are diagnosed with PMDD when they actually have another, lesser-known menstrual mood disorder: premenstrual exacerbation (PME). PME is most commonly associated with existing mental health disorders such as anxiety, depression, and eating disorders. According to one study, 60 percent of women with depression experienced premenstrual exacerbation of their symptoms,13 while another found that 30 percent of women with panic attacks had more of them during the second half of their menstrual cycle.14 Unfortunately, there’s very little research on PME. Not much is known about why it happens or how to treat it, particularly with regard to mood disorders. As of now, it doesn’t even have its own diagnostic criteria. It is simply packaged into the medical definition of PMDD as a sidenote (see Appendix C, item E).
PMDD is different from PME in that the symptoms vanish during the follicular phase, whereas people with PME and a preexisting condition such as depression will continue to experience depression throughout their cycle—their symptoms just get worse around their period. Dr. Tory noted we also don’t know if PME is a type of PMDD, or if there are biological differences between PME and PMDD.
Dr. Tory told me that while PME is understudied, researchers do have some idea of what causes PMDD. During the luteal phase, progesterone levels typically rise. Progesterone creates allopregnanolone, a type of hormone produced in the brain that regulates behavior.15 Allopregnanolone reduces depression and anxiety for most people when it’s released. Typically, allopregnanolone binds to the GABAA receptor, a neurotransmitter receptor. Neurotransmitter receptors bind with brain chemicals, allowing for cell-to-cell communication.16 Dr. Tory theorized that people with PMDD might have a problem with their GABAA receptor. Instead of becoming calmer as progesterone levels rise in their bodies, people with PMDD experience the opposite. They become anxious, angry, depressed, socially withdrawn, and at times suicidal.17 In some ways, it’s possible to think of PMDD as an allergy to allopregnanolone.
Dr. Tory also hypothesized that there could be up to three different types of PMDD. In the first type, which applies to about 65 percent of people, menstruators have moderate symptoms the week before their period. In the second type, which applies to 17.5 percent, menstruators have symptoms immediately after ovulation for the whole luteal phase. This second type is informally called half-life, since symptoms last for two weeks of the month. In the third type, symptoms occur about one week before menstruation but continue throughout the bleeding.18
Anecdotal evidence suggests a correlation between PMDD and autism and ADHD. One study suggested that over half of women with autism have PMDD, while about half of those with ADHD have PMDD.19 However, these studies were small, and as of yet it’s too early to draw conclusions from the existing research.
Similarly, some anecdotal evidence and research suggests childhood physical, emotional, and sexual abuse as well as trauma are also correlated with PMDD. A 2014 study of Turkish women found that those without PMDD scored an average of fifty-nine points on the Childhood Trauma Questionnaire, compared to those with PMDD, who scored an average of sixty-eight points, where the higher number indicates more likelihood of childhood trauma.20 However, researchers still don’t know much about why these correlations exist.
Studies estimate that 3 to 8 percent of menstruators meet the criteria for PMDD.21 It’s harder to get numbers on PME because it covers such a wide variety of symptoms and because it’s understudied. One study reported that 40 percent of the women who seek treatment for PMDD actually have PME.22 While 3 to 8 percent may not seem like a large share of the population, PMDD is narrowly defined. About 48 percent of menstruators experience some form of PMS,23 and 20 percent don’t fit the symptoms for PMDD but experience PMS that’s severe enough to interfere with daily life.24 Since they don’t meet the criteria for PMDD, they are left without diagnosis or treatment, even though their lives are disrupted every month.
Psychiatry professor C. Neill Epperson, at the University of Colorado, who specializes in women’s reproductive and behavioral health, played a key role in making PMDD an official diagnosis. She considers it a miracle that more people don’t have premenstrual mood disorders given the vast impact hormones have on how our brains function. “Our brains are constantly changing to be able to adjust to hormone fluctuations,” she said. “Progesterone gets broken down into a steroid that acts like a barbiturate. A woman’s brain has to change to accommodate that; otherwise, she’ll be sedated during her entire luteal phase.”25
Experts are divided on the relationship between PMS and PMDD. Katharina Dalton, who pioneered the field of PMS research in the 1950s and ultimately the early studies on PMDD, talked about PMS as a spectrum. The symptoms that she identified as very severe PMS are what we now call PMDD.
Epperson thinks there’s room for debate. PMS can include severe physical pain without mood symptoms, but PMDD requires severe mood symptoms. Whether that means there’s a spectrum or that they are binary categories is still unclear.26 A 2017 study compared cells between people who have PMDD and people who do not. The researchers found behavioral differences at the cellular level in people with PMDD: there were differences in the proteins that control how cells respond to ovarian hormones.27
Many people I interviewed who have PMDD were frustrated when people call the condition “PMS” or “severe PMS” because they feel as if it invalidates their experiences dealing with a severe illness that is not cured by yoga, Advil, or a hot-water bottle. At the same time, PMDD is a tightly defined group of symptoms that doesn’t encompass other types of premenstrual suffering.
There’s a growing awareness that PMDD isn’t the only premenstrual disorder. One organization, IAPMD, the International Association for Premenstrual Disorders, is at the forefront of advocating for people with premenstrual conditions. It started off as the National Association for Premenstrual Dysphoric Disorder in 2013, but ultimately decided to move to “premenstrual disorders” out of respect for people who may not have PMDD but do suffer from menstrual cycle symptoms.28 Still, what is unnamed is frequently unknown. Most of the research that exists is conducted on PMDD. Most of the people I interviewed for this book had PMDD. Only a handful were diagnosed with PME, while others had one or two very severe PMS symptoms. As such, the bulk of this book will focus on PMDD, but it’s important to remember that there may be many people who do not fit the criteria for PMDD but who still suffer greatly. Their suffering deserves to be taken seriously.
While having a disorder with a diagnosis is certainly a step up—it means, at least, that there’s a name for your pain—on average it takes about twelve years to get a diagnosis for PMDD.29 One study estimates PMDD will cost people 3.8 years of productivity during their reproductive years.30 Meanwhile, people with PMDD continue to suffer, and the stakes are high. According to an IAPMD survey, 30 percent of people with PMDD have attempted suicide, and 70 percent have active suicidal ideation. Each of the people with PMDD I interviewed had a similar story. They mentioned a trail of broken relationships and dramatic dustups with friends, families, or partners, and many had trouble completing school or holding down jobs. All of them had been suicidal, and most of them had attempted suicide at least once.
Dawn, forty-two, is a self-identified hippie. Dawn is blond with an angular face and ends her sentences with a breathy laugh. In a previous life she’d worked at Club Med and then moved on to live in a commune. She is effortlessly cool, the kind of person who seems as if she could run into any crisis and bounce away unscathed.
When we chatted, Dawn was living in a farmhouse with her partner. The farmhouse was owned by an older man who let them stay for free. In return, Dawn and her partner helped out with chores. Dawn did as much as she could, except when she had PMDD. Then she isolated herself in an attic so she didn’t fight with anyone.
However, the farmhouse owner wanted Dawn to commit to a chore rotation schedule, which she was afraid to do. She didn’t tell him she had PMDD, but she did tell him she couldn’t be part of a chore rotation. “I told him I can’t be part of a team because I know I’m going to let the team down,” Dawn said. She paused, her breathy laugh gone. “This is the best living situation I’ve ever been in, and I’m so afraid I’m going to ruin it for me and my partner. I’ve ruined so much shit for him.” Her voice cracked.
She started describing all the ways in which, she felt, she’d ruined her partner’s life because of PMDD. Once, she jumped out of a car while her partner was driving her to work and ran through the fields screaming.
“You know how you just get crazy when PMDD happens?” she said, trying to disguise her tears with a half laugh.
I knew.
Copyright © 2024 by Shalene Gupta
