I’d seen three different doctors about my PMS while I was in high school. But my college gynecologist was the first to tell me the crawl-under-your-bed anxiety, irrepressible crying spells and other symptoms I experienced every month weren’t normal. I shouldn’t want to end my life, or even put my daily routine on pause, the week before my period, the doctor told me.
The ob-gyn referred me to a psychiatrist, but she didn’t mention any specific mental-health condition I might have, so I didn’t heed her recommendation. Not yet, anyway. I endured years more of spiraling and suicidal ideation first, until I started tracking my moods and noticed how different they were from the beginning to the end of my menstrual cycle.
In 2017, three years after my college gyno visit, a psychiatrist diagnosed me with premenstrual dysphoric disorder, or PMDD. Classified as a depressive disorder, PMDD affects an estimated 5-10% of women and people AFAB (assigned female at birth) in the US. It’s a serious condition. But given our societal disregard for menstruation — nearly half of women have faced “period shaming” — and well-documented tendency to underestimate women’s pain, perhaps it’s not surprising that PMDD is often dismissed as “bad PMS” and, as a result, remains underdiagnosed and undertreated.
This trend is dangerous: Around 30% of people with PMDD will attempt suicide in their lifetime, according to a 2018 global survey. Spreading awareness about the disorder, and empowering people who have it, is necessary for proper diagnosis and treatment. It’s also the first step in retiring a harmful archetype used to minimize female suffering: the PMS lady who can’t stop whining about cramps.
From an early age, women and AFAB are told that feeling tired, pissy and existential before our periods is a broadly shared experience that we just need to deal with. Those who investigate their grievances often question their inner strength — why am I the one who can’t cope?
A year before my diagnosis, I googled something like “why so sad before period?” The internet provided answers and solidarity. Passionate folks affected by PMDD, who shared their stories on community-led forums on platforms like Youtube and Reddit, brought me to tears in seconds.
PMDD is the big sister of PMS. It only became a formally diagnosable condition in 2013, when it was added to the Diagnostic Statistical Manual (DSM-IV) as a depressive disorder. It’s characterized by emotional and physical premenstrual symptoms that interfere with daily functioning during the last week of your cycle’s luteal phase. This phase occurs right after you ovulate, typically about two weeks before the onset of your period. A combination of fluctuating hormones are usually to blame for the extreme symptoms. Once your period starts, PMDD symptoms tend to dissipate. Although researchers aren’t exactly sure what causes PMDD, they suspect genetics play a role.
When my psychiatrist diagnosed me with PMDD, they read off its defining symptoms: Irritability, a sense of being out of control, difficulty concentrating, rejection sensitivity and decreased interest in usual activities, plus a range of physical symptoms including headaches, hypersomnia or insomnia, and body tenderness. That was me.
I realized while hearing the criteria that I’d been in denial about my suffering. I’d believed I could manage my pain if I were enough of a warrior — I just had to muster the strength to pop an Advil, get to my office and do the girl-boss thing. Apparently, I wasn’t the only person who’d bought into this myth.
In 2018 a UK research team surveyed women with PMDD about their experiences getting diagnosed. Survey respondents reported shame over not being able to cope with PMS symptoms. Many had been previously misdiagnosed with generalized anxiety, depression, bipolar disorder or personality disorders and received inadequate treatment as a consequence. Researchers concluded that increased awareness and earlier intervention are both key to improving the wellbeing of those with PMDD.
“We’ve made good strides in recent years,” says Liisa Hantsoo, a clinical psychologist who’s done research on PMDD. “But we still have a long way to go. One of the key questions is better understanding why PMDD happens. We also need more research on PMDD treatment, because current treatment options are limited and don’t work for everyone.”
Trouble finding treatment
Luckily, a lot has changed since I was 12. More and more PMDD studies are being published; you can now find research on the relationship between PMDD and other mental health conditions, such as anxiety, disordered eating, ADHD and substance abuse.
It’s also easier in the Zocdoc era (no #spon) to find a provider with experience treating “hormone-related mood disorders.” If you suspect you have PMDD, a psychiatrist or ob-gyn can diagnose the condition and help you develop a treatment plan. But this process can take time. There’s a “lack of awareness or education among healthcare providers,” Hantsoo says. As a result, finding the right person and successfully getting PMDD under control often involves trial and error, as well as ongoing self-advocacy.
“We did a study recently that looked at patients’ experiences interacting with healthcare providers when trying to get diagnosis or treatment for PMDD,” she says. “Many patients reported that they perceived their providers to lack expertise in recognizing or diagnosing PMDD. In fact, few graduate or medical training programs include education about PMDD for providers in training.”
I experienced this firsthand. While my psychiatrist is helpful, she told me she doesn’t “fully understand” one of the popular treatment methods for PMDD, which entails taking an antidepressant during only the luteal phase of your cycle. So instead of trying this method, she prescribed me an SSRI called Sertraline to take continuously, all month long. It’s helped me stay calm and avoid harmful thought patterns.
In addition to meds, I manage my PMDD symptoms through lifestyle habits associated with mental well-being: I practice good sleep hygiene, eat leafy greens, go easy on caffeine, take vitamins, and avoid smoking and drinking.
“As with everything in the human body, in order to really cure or heal, we have to do a combination of looking into the modifiable lifestyle factors, like diet, exercise, stress management, and also looking for underlying infections or toxins that may be contributing to difficulty with balancing hormones,” says Marilynn Karas, a nurse practitioner at New York’s Functional Medicine for Women.
Karas says she prefers to focus on the whole body with any issue a patient faces. “Most of my [PMDD] patients find me,” she says, “because they are tired of living with the symptoms and equally as tired of not getting solutions from their medical providers.”
There are a few other treatments for PMDD. One is the birth control pill Yaz. Research suggests the two hormones in Yaz, Drospirenone and ethinyl estradiol, can help mitigate PMDD symptoms. Another approach combines Yaz and ingredients used in acne treatment, such as levomefolate.
There’s also exciting new research on a drug called ulipristal acetate, which works by regulating the hormone progesterone. Premenstrual mood symptoms that come with PMDD are thought to stem, at least partially, from progesterone levels rising during the second half of your menstrual cycle. Things are looking up in the world of research surrounding PMDD! And I’ve finally found a way to manage it in my own life.
At first, after finding an effective treatment plan, it was almost jarring not to experience PMDD symptoms. I’d grown accustomed to a week of total hell before my period. When it came and went, without the usual tears and emotional turbulence, I thought something had gone awry in my reproductive system.
And then the relief hit. Monthly torture wasn’t something I needed to tough out. It wasn’t normal. It wasn’t some shared lady experience to bond over. I had a medical condition for which I deserved proper care.