It’d be dishonest of me to say PMDD doesn’t, in some small way, rule my life.
Hormones cause me to amble through an unrelenting fog, a fog that takes over my life for two weeks out of each calendar month. It's not a fog that sweeps in much to my surprise. It's instead a fog which I expect trepidatiously, can stand on my tippy toes and see it coming, creeping closer to me from miles away.
And each time, despite how much I prepare, despite how much I relish in the joy and peace I have when it's gone away, I can never be quite ready for my world to be turned upside down for weeks and to feel like a shriveled shell of my former existence. Almost like watching myself morph into a version of me unrecognizable, one where depression, anxiety, insomnia, migraines, aches, pains and a laundry list of other symptoms become what I must manage all on my own.
"It’d be dishonest of me to say PMDD doesn’t, in some small way, rule my life."
When I reflect back on when I first knew that the PMS I experienced was radically different from what other women I knew experienced, I was in my early 20s. I noted how it ravaged me completely. It instigated tiffs with people closest. It made viewing things as they truly were, rationally, almost impossible. It meant yielding control over my body and life ceremoniously to what I discovered was ultimately, premenstrual dysphoric disorder, a severe form of PMS, which according to DSM-5 requirements is now considered a reproductive mood disorder. And as I discovered, I’m most certainly not alone in all I feel for multiple weeks out of the month.
What is PMDD?
Pre-menstrual dysphoric disorder, commonly referred to as PMDD, takes what most women identify as PMS, the period before the onset of the menstrual cycle and amplifies the effects and symptoms to an unreal degree.
Anywhere from 2 -10% of women deal with PMDD at some point in their lifetime, according to an American Family Physician study issued in 2002. Some doctors and researchers alike have pinpointed the brain chemical serotonin for offsetting the severity of the symptoms women with PMDD experience.
An important clarification between the two, what distinguishes PMDD from run-of-the-mill PMS, is not only the severity of the symptoms, however, but in its effect and interference with mental and behavioral health.
“In general, women with PMDD have to have a period of time of significant change from baseline during the luteal phase,” Samantha Meltzer-Brody, associate professor and director of the perinatal psychiatry program at the University of North Carolina’s Center for Women’s Mood Disorders, said.
The luteal phase can be thought of as the time in-between, as it routinely occurs after ovulation and before the onset of a menstrual cycle.
Meltzer-Brody said the significant change, the switch, strongly deviates from the periods of normal mood which makes it irrefutable that hormones are causing women to be “extremely symptomatic.”
In her work at UNC, Meltzer-Brody primarily focuses on perinatal psychiatry and women’s reproductive mood disorders at large, but as a clinician, she occasionally treats women with PMDD. Since her tenure at UNC started in 2000, she’s noticed common threads with PMDD sufferers.
“It really varies from person to person, but a lot of people will feel they are extremely moody,” she said. “For many women, it can be low mood, irritability, anxiety, difficulty sleeping, fatigue, difficulty concentrating. A lot of women will [also] report a lot of irritability and sadness that affects interpersonal relationships and their ability to get along with colleagues at work, friends or a significant other.”
Getting a PMDD diagnosis is much bigger than just reading up the symptoms online or noticing that PMS may affect a woman weeks out of a month more severely than most others. There is a distinct protocol which must be followed not only to ensure proper diagnosis but to get a handle on the best treatment, too. If a woman has a suspicion that she may have PMDD, her first course of action is to inform her primary care physician, after which they will recommend she track her moods for no less than two months. This is also outlined via the DSM-5.
“Generally, you want at least two months [of prospective tracking],” Meltzer-Brody said. “Because one month, who knows if something happens that confounds it like a death in the family, severe work stress or something unusual.”
PMDD History And Research
Although it may seem PMDD is a new phenomenon affecting women, research dating back to the 90s states otherwise. It is unclear when the designation of PMDD deviating from PMS first arose but the mainstream notion of PMS and the symptoms affecting women during the luteal phase originated in 1931. At that time American gynecologist Robert Frank published an article on it and referred to the mass of symptoms as “premenstrual tension.”
The 2013 revision of DSM-5 included the criterion for diagnosing PMDD as either borderline, mild, moderate or severe and at least five of 11 total symptoms needing to be present. Earlier this year, the National Institutes of Health issued a new report providing a link to PMDD being a “disorder of cellular response to estrogen and progesterone.”
NIH isn’t the only institution who has done concerted research on PMDD for decades. Under the wing of UNC’s School of Medicine, the Department of Psychiatry has ushered in research via their Center for Women’s Mood Disorders. Even more specifically is the realm dedicated reproductive mood disorders, where Meltzer-Brody carries out her work at UNC. Currently, NIH has one ongoing PMDD research study while UNC has two.
A startling statistic Meltzer-Brody shared with me is that up to 50% of women who self-report as having PMDD after doing prospective tracking for two months don’t have PMDD at all — but instead an underlying mood disorder that the hormonal shifts associated with menstrual cycles exacerbate.
Why is that so? It’s a simple answer really: the heavy weight of stigma. For many women, it’s an easier pill to swallow that their hormones be the cause of poor mental health.
The Stigma Of PMDD And Reproductive Mood Disorders
Preceding all of this factual evidence, including the DSM designation as PMDD as a mood disorder, is the assumption it is all imagined. That the symptoms, the emotional and mental turmoil, is exaggerated, made-up, not even real.
The consensus of it is not just limited to everyday people — friends, family, significant others but psychologists, psychiatrists, and researchers, too. In 2002, the American Psychological Association published a piece that was a cover story for their magazine entitled, “Is PMDD real?” The piece went into depth talking to different people of the medical community about defining PMDD, the different drug treatments for it and how some people find the language surrounding PMDD harmful and detrimental to women. Paula Caplan, author of “They Say You’re Crazy” said within the piece that PMDD and characterizing it as a mood disorder, “It’s a label that can be used by a sexist society that wants to believe that many women go crazy once a month.”
In the early 2000s, commercials for Sarafem, which is actually Prozac but was later rebranded as fluoxetine hydrochloride, hit TV airwaves. One commercial showed a woman struggling to remove a grocery cart from a group of carts corralled together. Another was a woman rushing to get to work but couldn’t find her keys and raising her voice to try to find them. A female voiceover on the commercial spoke in a reassuring tone, implying that if you, too, struggled like either woman did, at the grocery store or on the way to work, for weeks at a time, it might not be PMS but PMDD. And the solution just might be Sarafem, an antidepressant.
The drug was marketed in a brightly-colored pink box. It was Prozac, but it looked fun, more appealing. It was intended to stave off the apprehension many women had towards taking a drug typically used for those struggling with their mental health. Ironically enough, the Federal Drug Administration pulled the commercial after not too long, citing that there wasn’t a clear enough distinction between PMS and PMDD. The DSM’s update in 2013 seems to have resolved the lack of distinction.
Last year, Slate published an excerpt of writer Frank Bures book, “The Geography of Madness: Penis Thieves, Voodoo Death and the Search for the Meaning of the World’s Strangest Syndromes” in a piece entitled, “Is PMS Real?” Bures' premise is that PMS is merely a figment of our “menstruation-fearing culture” and he drives home his point through presenting data. In the end, he arrives at the idea that, if it is indeed a syndrome, it is a cultural one mostly afflicting American women.
On the surface, Bures’ piece seems well-researched and nuanced, until you, of course, read the conclusion which discredits completely if PMS, and subsequently PMDD, occur. The one thing his piece does do though? It contributes more to a culture of stigma. It’s yet another voice of the chorus, preventing women from seeking help and treatment and instead managing in silence. It makes more women feel like maybe what they’re feeling, what they’re experiencing month after month, for weeks at a time, is something they simply have to endure.
“As a psychiatrist and women’s mental health psychiatrist, I spend so much time battling stigma and sexism,” Meltzer-Brody said. “It’s sill so hard for women and men to talk about depression. And I think hormonal things get really interesting trying to figure out how to discuss it, increase awareness and get people adequate treatment.”
Succinctly said, stigma is powerful.
Similar Stories And Treatment
I was a late bloomer, in everything as far as reproductive health and development are concerned anyway. I didn’t get my period until I was 13, an age where many of my other female classmates had been menstruating for years, slipping out of the classroom throughout the day to change their pads or tampons. At 13, I was willing my body to produce breasts to have a reason to wear bras like everyone else. Eventually, my mother relented, probably feeling sorry for me and my obsession, and let me pick out a satin bra with a petite, pink ribbon in the middle. I felt emboldened having the straps hang out beyond the t-shirts I wore.
When I finally did get my period, I was woefully unprepared. I still remember staring down at the rust-colored stains in my underwear in the middle school bathroom panicked and unsure of what to do. I thought I was dying. From all the books I’d read about periods, as well-informed as I thought I was, for some reason, I thought getting my period meant all I did was sit down on the toilet and pee blood for an undetermined amount of time. Not this awful secretion sitting in the seat of my underwear.
For every woman, she remembers when she started her period as a girl, at whatever age it was. But every woman who has PMDD also remembers when she realized that what she dealt with before the onset of cramps and bleeding was something different, something significant to pay attention to.
Cameron Glover, a writer and sexual educator in New York City, started her menstrual cycle at ten years old. She spent nearly four years experiencing debilitating symptoms until she was officially diagnosed with PMDD at 14.
“There was a while that I thought what I felt was normal,” Glover said. “Going anywhere was out of the question and and even drinking water would cause me to go into a new fit.”
Glover believes what made her diagnosis so delayed was the fact that her mother hadn’t had the same experiences surrounding her period and didn’t really know what to do.
A PMDD diagnosis helped her significantly, along with going on birth control around 15 or 16 to help quell her symptoms. In addition to hormonal birth control, Glover said a few lifestyle tweaks, including cutting out meat and relying on a mostly plant-based diet, helped her to manage her symptoms and keep them at bay.
Sarra Sedghi, a writer and editor in Athens, Georgia, can pinpoint most of her bad (anxiety) attacks in the past to her period. Because of this, Sedghi’s psychiatrist put her on hormonal birth control in 2009.
“Depending on whether I’m on birth control or not, my PMDD affects me anywhere from one to two weeks before my period,” Sedghi said. “At its worst, I’ll have horrible cramps, really sore nipples, and insatiable hunger pangs.”
Like clockwork, the week before her period is due to start, Sedghi will start to feel hopelessly depressed, at which point she remembers precisely this is the work of PMDD. Sedghi was careful to note that although birth control helps her symptoms greatly, finding the right form has been challenging. Because of that, even today, sometimes there are stretches of time when she takes nothing at all — and has to wade through the symptoms all on her own.
“Sometimes I just treat my period like a sick day and hide, so I guess you could say I handle it like a particularly bad anxious or depressive bout,” Sedghi said. “I try to stay away from people because I know I’m testy and moody and will probably say something harsh or get my feelings hurt since I’m extra sensitive.”
Things like exercising more along with upping her amount of protein and proactively taking Ibuprofen tend to help as well.
For women with PMDD, treatment varies. For some women, hormonal birth control helps tremendously. For others, anti-depressants are the solution. Lifestyle changes like more exercise, a more balanced diet, and taking natural and herbal supplements may help as well. And for some women? Their treatment for this reproductive mood disorder can be a combination of several things working in tandem with one another.
Support And Moving Forward
It’d be dishonest of me to say PMDD doesn’t, in some small way, rule my life. I’ve tracked my period for over a decade now, and on all the calendars I own — iCalendar, my carbon copy, and even my period app — I know when my period is coming. Meaning I know when to expect PMDD to be on its way. I plan trips around my menstrual cycle if I can. I silently note to myself when I won’t have energy, when I won’t feel like being social, if I’m more prone to be reactive and need to withdraw to spend more time alone watching Netflix. I decided a long time ago not to make what I deal with anyone else’s problem if I can prevent that. Sometimes I lose, and people see me exposed.
This is where having support and people who get it makes all the difference. Organizations like the Gia Allemand Foundation have outreach such as peer support groups, Facebook groups, and blogs written on varying aspects of living with PMDD. There are resources if you want them. There is solace, too. This mood disorder doesn’t have to rob you of everything.
I’ve never tried hormonal birth control as an option to alleviating the symptoms I face. I was once on it around the time I was 18, and it had disastrous effects for me. I’m reticent about it now for real reasons. For me, what has helped is eating better, exercising when I can, and regular therapy. In the future, I’m considering antidepressants as an option. I don’t know what the future holds concerning treatment, but now I know I’m not crazy. I know this is not all in my head. I know what I feel is real. I can’t express how much of a relief it is to know these three things.
But it feels, in some grand way, like holding hope once more.
