My period does what it wants to do, when it wants to do it. There’s the week when my sex drive spikes to a nearly uncontrollable level (which is at odds with my suddenly excruciatingly sensitive boobs, mercurial mood and digestive turmoil); the two days of paralyzing anxiety or impulses to quit life, move to Europe and/or cut off all my hair; and the couple of days when my thoughts are so dark, it’s wise to stay away from bridges.
I’ve long known something was amiss, but until recently I had no real explanation. With the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the bible used by medical experts to diagnose patients, I may finally have an answer. The revision, to be released next month, will for the first time recognize “premenstrual dysphoric disorder” (PMDD)—a form of extreme PMS—as a distinct condition. (Red “Seeing Red” at the end of this article for more on the hotly debated change.)
Until my mid-20s, debilitating pain was my main complaint. Taking prescription painkillers only made me nauseous, and my body treated birth control pills like poison: Periods lasted up to two months; the pain was just as bad, if not worse; and I gained 40 pounds in a matter of months. I underwent exploratory surgery to see if a “hidden” case of endometriosis could be the culprit. I wasn’t.
In those early years, I was desperately optimistic that medicine could fix me. But as doctors experimented with my already volatile chemistry, I realized how little they concretely knew about my body. So I learned to cope, with a “suck it up” stoicism inherited from my mom, who had suffered similarly. And when the pain became too much, dark rooms and bourbon were as effective as anything.
Just as I made peace with the physical torment, in my mid-20s, the premenstrual symptoms took a turn for the worse— arriving earlier in my cycle, and packing an entirely new emotional wallop.
This is the pattern to this day, at age 28: First, a fever, then a day or two of nausea or vomiting. My digestive system gets upset, resulting in emergency runs to the bathroom, or lamentably few trips. My breasts swell by a cup size or two. Taking stairs demands holding them down because even the slightest jiggle is spectacularly painful. I feel “phantom cramps”—premenstrual pangs as bad as real menstrual ones. Muscle and joint aches wake me at night. Add the miserable prelude to the period itself, and symptoms last up to three weeks.
Still, I can deal with pain. What I can’t bear is the monthly mental unravelling. Normally the type to log 14-hour days with gusto, I morph into someone who stares at a wall for an hour. Basic decisions become comically difficult. Getting dressed takes 40 minutes. I’m anxious, paranoid and distant, on edge about nothing and everything. This once-a-month person is unstable. She reneges on plans. I don’t want anyone—from my mom to my men—to see me this pathetic, or to worry. And I fear if I talk about my symptoms, I’ll be branded “mad.”
There’s a lot of self-loathing—both for faltering, and for being so self-absorbed about it. I can’t articulate to others why I’m useless. We’ve all seen the eye rolls when a friend or co-worker attributes an absence or inability to a case of cramps— I still eye-roll others and myself—and that’s the dismissive reaction to the much-more-common PMS experience. Gripe about PMDD and you’re met not with empathy, but blank stares and tumble-weed silence.
I realized I wasn’t so good at hiding my problem when I nearly lost my job over it. I had been going MIA, without much explanation. After a year of forgiving such delinquent behaviour, my patient boss questioned how seriously I took my job. I couldn’t confess the truth, but I vowed to get a handle on it—or at least try harder to feign a normal front.
So I rouse myself and go to work. In between bouts of lethargy, I become impatient, pick fights and prod anyone I find irritating or stupid, which for this week is everyone. I walk a very fine line between snapping at others and breaking down. I’m never sure whether it will be yelling or crying that comes out.
For someone who is normally cheerful, this is the most disturbing change of all: a plunge into unrecognizable despair.
Tracking the symptoms helps: It reassures that when I have the impulse to linger close to the edge of subway platforms, I probably won’t do anything. It’s not how I really feel—it’s temporary. I imagine friends and family would be disturbed, except I’ve never admitted this particular symptom to anyone until now. It’s worrying to the point where I stay away from bridges and subway platforms on these days. When you don’t recognize yourself, how can you be sure what you’re capable of?
Without a name, these symptoms feel like my own shameful mystery. With an official name, they seem a confirmation of physiological shortcomings. So while the description of PMDD symptoms sounds all too familiar, I’m still loath to put a label on my premenstrual meltdown. Lacking confidence in doctors, I’ve mostly avoided them since those early days of trying to treat my extreme cramps. And if I did get diagnosed now, I know solutions aren’t clear cut or simple. I can’t handle this taking over more of my life.
Like me, Fiona Wooster*, a 36-year-old artist and educator in the U.K., endured severe PMDD, with doctors unable to decode why. “I spent my 20s battling depression, which was cyclical, and I couldn’t ever pinpoint it. I went to my local doctor, different GPs, numerous times, and nobody asked me to track my symptoms against my menstrual cycle.”
Wooster felt she was leading a double life. “I could socialize during the good bit of the month and I’d be one person, but I’d be dreading what was to come.” The other part of the month, averaging two weeks, she would become withdrawn, paranoid and tearful. Her ex-husband said he would be afraid to leave her alone with children (she later chose not to have any). “In my darkest hours, I was thinking, once my parents have died…I’m not sure if I want to carry on living.”
She tried using antidepressants intermittently, just during the bad weeks, but they came with side effects of wooziness and exhaustion. She experimented with a wide range of dietary supplements, none of which provided relief. Finally, a doctor prescribed hormone therapy, which included a medication to “temporarily shut down her ovaries” (inducing a kind of chemical menopause). It worked.
Intent on a permanent solution, Wooster chose to treat her PMDD by undergoing a hysterectomy, including removal of her ovaries, an experience she documented on her anonymous blog, msjekyllhyde.wordpress.com. (She calls the procedure “very successful,” and no longer suffers cyclical mood swings.) She hopes to provide a voice for frustrated sufferers such as herself. “The reaction of women when they find others in the same boat is very emotional; you feel so much better knowing you’re not alone,” she says. “I certainly lost friends over this, in part because I didn’t know what was going on, or I wasn’t honest with them.”
It’s an isolating experience, an out-of- body experience. It takes years to become adequately aware of these physiological eccentricities, which are hard to understand because they keep changing; just as you think you’ve got a handle on them, you’re thrown for a loop. This makes it much harder to hide the experience, and the stress of not being in control often prompts social withdrawal.
With the DSM-5 confirming PMDD’s status as a unique disorder, will women such as Wooster and me be better off? Dr. Valerie Taylor, chief of psychiatry at Women’s College Hospital in Toronto, sees both pros and cons. “If we have criteria, I think women will feel validated and perhaps think, OK, it’s not in my head,” she says. The downside is the potential for sufferers to face stigma.
The prevalence of PMS is 20–40 percent, while PMDD is estimated to affect 3–8 percent of women. The difference between the two is the degree to which the symptoms impact your life. Without treatment, “someone with PMDD is significantly impaired,” says Dr. Taylor. “It’s not as simple as grin and bear it.”
Although Dr. Taylor makes the distinction between PMS and PMDD, an ambiguity prevails. And there is not only a lack of awareness but also skepticism over its very existence.
“I personally do not believe PMDD is a unique disorder from depression,” says Dr. Donna Stewart, university professor, director of women’s health and senior scientist at the University Health Network and the University of Toronto. In her 40-plus years as a psychiatrist, she has “seldom seen it.” Having sought help from my own doctors, and been offered anti-depressants rather than answers, I admit that I, too, question if PMDD is anything more than a marketing invention. To be clear, my symptoms are real and trackable, cyclical and seemingly hormonal. But ought they be categorized as a distinct disorder, and treated differently than normal depression?
“It’s very hard to separate the politics and the power from the actual science sometimes,” says Dr. Joy Johnson, professor at the University of British Columbia and scientific director of the Institute of Gender and Health at the Canadian Institutes of Health Research. It’s shocking to her how little we know about the effects of the menstrual cycle on women’s psychological states. “I think there’s a story to be told here about what we find interesting in science, and what’s important,” she says. Dr. Johnson suspects drug companies will play a role in promoting PMDD awareness among doctors, while Dr. Stewart believes the condition’s entree into the DSM-5 is “career-motivated by psychiatrists who ‘specialize in this disorder.’”
Herein lies the dilemma: As the debate rages, there are still women presenting symptoms who need treatment and shouldn’t have their experiences denied. By medicalizing it, Dr. Taylor notes, “people will hopefully feel more comfortable receiving and seeing it as a diagnosis and not a label.”
But for now and for me, I do feel it’s a label that carries stigma. And it sure gets hooked into sexist attitudes, says Dr. Sarah Romans, a psychiatrist at the University of Otago in New Zealand, who recently led research at the University of Toronto examining how menstruation affects mood. For although the condition’s official recognition is a step forward in acknowledging feminine difference, it’s also yoked to a biological determinism.
“What really worries me is the idea that when a woman has a low mood, it is too frequently invalidated as an aberration caused by her reproductive hormones and not to be taken seriously,” she says. “When men have a low mood, it is not attributed to him being a reproductive human.”
(Don’t hold your breath for the day when an equal-opportunity DSM recognizes “irritable male syndrome,” which can allegedly strike a guy at any age, causing hypersensitivity, anxiety and anger due to stress-induced testosterone fluctuations.)
As a woman, I’ve been instilled with the sense that not only can I do it all, but also that I should. I’m supposedly in control of my own destiny. Once a month, I feel as if I’ve failed myself. I partly blame all those women in tampon ads, what with their white pants and cartwheeling—shilling a fantasy we so want to buy into.
Diagnosing PMDD may be easier now, but the condition itself remains opaque. There’s some comfort in this: If doctors don’t understand the enigmatic nuances of women, it takes pressure off me to figure it out. After talking with Dr. Taylor, I realized my likely next step would be to medicate, with antidepressants as the most probable option. SSRIs such as Zoloft are typically recommended, for use continously (in severe PMDD cases) or cyclically in the two weeks pre-period (in lesser cases). But I hesitate: I’ve seen friends go on antidepressants and lose their twinkle, and I prefer my current ebb and flow over a drug-induced personality change. Using antidepressants seems like I’d be “treating” PMDD without understanding it, and then would I be dependent on a numbing agent for life? Hormone therapy, as Wooster tried with success, is another possibility for some sufferers; however, I’m not ready to go that route after my nightmare with the pill.
I remain optimistically doubtful that the addition to the DSM-5 will help me. My hope is that if and when I want to attempt treatment in the future, doctors will not just be asking questions but ready to provide more answers.
*Name has been changed.
Seeing Red: Why your doctor’s updated mental health bible will recognize extreme PMS
Most of us have endured the bloating, cramps and moodiness that foreshadow our flow. But according to the American Psychiatric Association’s fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), some women suffer premenstrual symptoms so debilitating that they will now be classified as a distinct mental condition: premenstrual dysphoric disorder.
“Since DSM-4, there’s been substantial research,” says Dr. Kimberly Yonkers, professor of psychiatry and obstetrics and gynecology at Yale University and chair of the DSM-5 workgroup on PMDD. “And the research indicates that there are differences between those who have PMDD and those who don’t.”
Not everyone agrees, however. “It sickens my soul to see that PMDD now, for the first time, is going into the main text [of the DSM] as its own category, which gives it an aura of scientific precision that is not justified by the research,” says Paula Caplan, Harvard University psychologist and author of They Say You’re Crazy: How the World’s Most Powerful Psychiatrists Decide Who’s Normal. (She was an advisor to committees on the DSM-4 before resigning due to disagreement over process.)
While some critics argue the disorder is socially manufactured and specific to cultures where women are taught to feel shame about menstruation, studies have found similar prevalence rates—3–8 percent of women—in Canada, India, Japan, Europe and Kuwait.
The condition is characterized by intense depression, anxiety, irritability and anger that occur exclusively in the two weeks before menstruation and seriously disrupt a woman’s life. The causes are still unclear, but some evidence suggests a genetic predisposition. One theory holds that right before menstruation, sufferers may experience a dip in levels of serotonin, a neurotransmitter thought to produce feelings of happiness and wellbeing.
Women diagnosed with PMDD are first offered non-medical treatment options such as stress reduction and relaxation therapy, says Dr. Simone Vigod, a staff psychiatrist at Women’s College Hospital in Toronto. If symptoms persist, doctors often turn to selective serotonin reuptake inhibitors (SSRIs), a type of antidepressant.
What concerns Caplan is that too much of the research has focused on drug treatments—and not on whether PMDD is a real medical condition. “For decades, they’ve been asking what helps and saying it’s psychotropic drugs. But the good research shows that the really effective way of helping women with menstrual problems is with diet, exercise and support groups,” she says.
For a physician such as Dr. Vigod, who gets about 10 women referred to her each month with suspected PMDD, the change to the DSM-5 is a welcome one. “I think it’s important to legitimize PMDD as a disorder,” she says, “not to stigmatize people but to say that there are appropriate treatments. It gives people hope.” —Jennifer Goldberg