PMDD has wreaked havoc on my mood, my work, and my relationships. I went on a journey to discover why — and whether there's any solution.

Lisk Feng for BuzzFeed News

Twice in the past nine months, I lost so much blood during my period that I fainted in restaurants, waking up afterward on the floor. Besides the fainting, each month looks different: Some can involve crying constantly for a few days; others can include one batshit day where I chuck a water glass at my boyfriend Tony’s chest.

I’ve just moved in with Tony and his 8-year-old daughter, and at 32, my PMS is worse than ever. Three weeks a month my relationship feels picture-perfect; lovey-dovey, hand-holding, swimming and hiking — and then, one to seven days out of the month, I lose control. Either way, it’s like a terrifying game of choose-your-own-adventure, and I’ve been adamant in trying to tame it, especially since I now have a responsibility to a partner and a child for the first time in my life. Late last summer, after diagnosing myself with premenstrual dysphoric disorder (PMDD) on my therapist’s suggestion, and then getting officially diagnosed by my doctor (there’s nothing more validating than seeing PMDD and severe mood swings and cystic acne typed up officially on a document next to your name!), I became what we call obsessed. I started following the hashtags #pmddpeeps and #pmddsucks and #pmddnotpms and #pmddsurvivor. PMDD is a hormone-based mood disorder whose symptoms show up during the luteal phase of the menstrual cycle — between ovulation and the onset of a period. Affecting about 3%–10% of people who experience menstruation, PMDD is currently suspected to be a genetic disorder: A study published by the National Institutes of Health in January 2017 showed a link between PMDD and dysregulated responses from a particular gene complex sensitive to estrogen and progesterone. The resulting symptoms, from rage and paranoia to anxiety and fatigue, are intense enough that they affect your relationships and jobs. Since I met Tony a year and a half ago, managing PMDD has been basically a full-time gig for us. On one of my deep Instagram dives, I came across the Gia Allemand Foundation, a nonprofit organization — newly renamed the International Association for Premenstrual Disorders — which raises PMDD awareness and offers resources, like a self-screening tool, a symptom tracker, and online peer support groups. The foundation was originally named for Gia Allemand, who was a model and a contestant on The Bachelor. Soon after she was diagnosed with PMDD, she killed herself during a phone call with her mother, Donna Micheletti. Donna heard Gia’s last breath over the phone. It was August 14, 2013, and Gia was 29 years old. The Gia Allemand Foundation launched after Gia’s death in 2014, and in 2017, hosted its first conference. Clinicians, gynecologists, psychiatrists, doctors, and women with PMDD (along with their family members and/or partners) were all welcome. PMDD is a vastly understudied and stigmatized disorder both inside and outside of the medical community, though the doctors, gynecologists, and psychiatrists who attend the conference are the few in their fields committed to changing that. As soon as I learned that the event existed, I knew I had to go. In a lifetime, a menstruating person has roughly 450 periods, which equals six full years of PMDD symptoms. You basically dedicate your life to fixing yourself, even though, as far as we know, there is no fix. Tony asked me how many people would be at the conference; I had no idea. I speculated about 500. There ended up being 84, significantly more than the 11 people who showed the first year. I felt like I was ahead of the curve; I think in the next decade, more people will be diagnosed with PMDD instead of being misdiagnosed as bipolar, like they often are. Girls in their twenties have hurled “She’s like, bipolar” and “What a schizo!” and “You’re acting so manic” as insults; I think “She definitely has PMDD” is going to be the trendy new jab. But PMDD isn’t funny, or at least not to me. And I don’t think I always had PMDD — the paranoia and rage are so acute, so life-altering, that there is no way I wouldn’t have noticed it in my twenties, ruining my life.

Alyssa Kirsten Participants Chloe Caldwell (middle) and Katie Bigras (to Chloe's right) at the 2018 PMDD Annual Conference.

Day 1 (Day 24 of cycling) The PMDD mixer began at 6:30 p.m. in an event space in the lower level of a hotel in Boca Raton, Florida. After carefully choosing my outfit, including new, on-sale floral pants from Anthropologie — which, looking back, I think I wanted to convey, “I have PMDD, but I also have my shit together” — I took the elevator downstairs and entered the darkish dining room. I checked in and found the lanyard with my first name on it. They were also selling merchandise: black backpacks that read FIGHT LIKE A PMDD GIRL, chakra bracelets, silver bracelets engraved with “be brave,” and a few books like We Need to Talk About PMDD. The first thing I noticed at the mixer was the free food I should have eaten instead of the salad I bought at the hotel restaurant. I wasn’t hungry anymore, but I made a plate of crackers and veggies and fruit, then went to the bar and ordered a tequila and soda with lime, which is something else I do for my hormonal acne, as tequila is supposedly the cleanest alcohol with the least amount of sugar, and sugar causes acne. It would be so nice to just eat and drink things without considering acne. A girl can dream, right? I invited myself to sit with two women who were mid-conversation. One was the mother of a young woman with PMDD, there to get information for her 26-year-old daughter. The other was Katie Bigras, a nutritionist devoted to holistic PMDD tools. Katie was luminous, with almost butt-length brown hair. There was something familiar about her. “As soon as I saw you I knew we’d be friends,” she said. Slowly, more women joined our circular table: There was Cynthia, a somatic therapist who lives in Denver and attended with her mother, and another woman from Utah who attended with her girlfriend and her mother. Suddenly the table had grown from three of us to 10, all sharing our PMDD experiences. Katie explained that lately, after figuring out her sweet spot of supplementation (calcium, 5-HTP, magnesium) and a lot of self-love, she’s had her PMDD mostly under control, but she described one of her recent meltdowns: She was at a family gathering and her toddler nephew looked her in the eye and said, “I don’t like you,” and she cried in her car for a couple hours. “I can wake up in the morning and look out the same window and nothing has changed, but everything feels different,” another woman said. “We call it madface,” her girlfriend added. “Oh, madface is here. Sometimes I wish there was a pill I could swallow to experience PMDD for just two hours.” “This is pure indulgence,” another woman said, “but does anyone notice any creativity surges during Hell Week?” It reminded me of how I’d read in Sheila Heti’s novel Motherhood the narrator saying she never writes more than in the days leading up to her period. I haven’t tracked this so well myself, but I believe it, as those days we are more introverted, subdued, insightful. Some women describe PMDD as postpartum depression every month, some describe it as two weeks in prison. (I feel grateful if I only experience symptoms for 1–5 days.) As I told Tony later, it was interesting to speak with these women — all of whom were attractive, ambitious, articulate. To see this aspect of them, but know they also go batshit, flip shit, fly off the handle, was interesting. I looked around and tried to guess who had PMDD. I was wrong each time. At one point, so confident in my speculation, I spent 20 minutes speaking with a woman at the conference who ended up being a therapist without PMDD. Whenever someone confessed they didn’t have PMDD, my heart sank. You are so lucky, I exhaled to myself.

Alyssa Kirsten John Stapert presenting at the 2018 PMDD Annual Conference.

Day 2 (Day 25 of cycling) We had to be in the lecture hall at 9 a.m. I spotted Katie immediately, who saw me and said, “I hope this isn’t weird, but I saved you a seat.” First up was an older white male doctor, who basically told us going on an antidepressant would eradicate our symptoms. (As someone who has tried this, I was rolling my eyes a little; if treating PMDD were that easy, we wouldn’t have been at this conference.) Next, an expert in PMDD diagnosis explained there is now genetic testing that can be done, molecule by molecule, to identify women who carry the VAL and/or MTHFR (does anyone else think of this as motherfucker?) genes, which may make you predisposed to having PMDD. A psychologist gave a lecture on using DBT (dialectical behavioral therapy) and CBT (cognitive behavioral therapy) as tools for combatting PMDD. I happen to love both of these therapies and they’ve helped me greatly in my twenties. She explained that if we are able to bring their principles of “wise mind” and “reasonable mind” to “PMDD mind” (which is ruled by hot thoughts, emotions, feelings, urges), it would be helpful. One of the CBT tools is called “opposite to emotion behavior”: To do this, identify the emotion (sadness), identify the mood-dependent behavior (inaction/isolation), then do the opposite of that (exercise, social interaction, productive behavior). After a while, the feedback loop is broken, and you have successfully managed that painful emotion. One of her suggestions for when you’re angry, for example, is to “be a little nice,” instead. A woman in the front row, passionately using sign language to express herself, was translated by her signing partner. She said, “I don’t agree with you. If I’m mad in my PMDD mind, I can’t just be a little a nice.” She explained she has PMDD symptoms for three weeks out of the month. I was so glad she spoke up; though l appreciate CBT, it is not always possible to break the feedback loop of negative emotions in the moment. I wished someone at the conference would talk about how to deal with the rage some of us experience, instead of just stuffing it down.

Alyssa Kirsten Two women talking at the 2018 PMDD Annual Conference.

The day was long — at lunch I ducked out to pick up a prescription for an antibiotic for my cystic acne. I haven’t been on an antibiotic for acne in about a year, but that’s how bad this cyst was, making me self-conscious with everyone I spoke to, which is just my lot in life and I’m used to it. I considered skipping the latter half of the day but convinced myself I’d just get depressed. One misconception of PMDD is that it is a hormone imbalance. PMDD is not a hormone imbalance; it’s an abnormal reaction to those hormones. Your hormones are doing everything they're supposed to be doing. In the luteal phase, the two weeks leading up to your period after ovulation, progesterone rises and releases a chemical called allopregnanolone (my new favorite word, just rolls off the tongue, maybe I’ll name my daughter after it), which, in the majority of women makes them more subdued, fatigued, cranky. But the difference is that some women are sort of allergic to the allopregnanolone, and their bodies perceive it as a threat. Toward the end of the day, I was exhausted from having heard this fact reiterated over and over again. An abnormal response. We learned that that three of the women on the board of directors ended up getting hysterectomies for their symptoms, which was disheartening (to me, at least, as that was seemingly proof that the disorder eventually became too hard to live with and that nothing else worked). Two out of three of them have children and husbands. During pregnancy, PMDD symptoms disappear for most women, though if you have PMDD, you are more prone to experiencing postpartum depression (the fun just never ends!). Amanda, one of the directors, describes being on the 30th floor of a hotel with her husband and in-laws and feeling so disoriented that it was as though she was floating above the scene, watching herself change diapers. She told her husband she was having thoughts of throwing her newborn off the balcony because then she’d be able to sleep and no one would need her anymore. Her outbursts were linked to her period, and the cyclical nature of symptoms mirrored the PMDD she’d experienced pre-pregnancy.

Alyssa Kirsten Participants at the 2018 PMDD Annual Conference.

We were told that traumatic life events, objective life stressors, and recent perceived stress can all trigger PMDD symptoms. Everything can affect your hormone levels: losing weight, how much you’re exercising, what you eat, your sleeping habits, and supplements. At the table flanking mine, I recognized Brett Buchert from Instagram, the founder of the Me v PMDD app, sitting between her mother and father. Me v PMDD is an app where you can track your symptoms, use a self-care journal, find resources, and fight PMDD “like a warrior,” as they say. Brett is 22 and was diagnosed with PMDD when she was 21. “Both of my parents have been a huge support to me in my journey with PMDD,” she told me, and she created the app with her mom, Sheila. She said that she takes an antidepressant called Viibryd, a medication called finasteride that prevents the conversion of progesterone to allopregnanolone, which might cause PMDD symptoms if levels are too high, and a birth control pill called Tri-Lo Sprintec. “I also take iron, vitamin B5, vitamin D, and a probiotic. It's quite a mix, but it's helped make my PMDD much more manageable.” Some women told me they keep ice packs in their car to use when they get symptomatic. Some use weighted blankets during “Werewolf Week.” Some use a scent diffuser that blows lavender oil while changing colors and find it to be soothing. One woman, married for 14 years, locks herself in a hotel room to rage-write in her journal for a couple of days. She attended the conference with her husband, and I admired their relationship.

Alyssa Kirsten Two women at the 2018 PMDD Annual Conference.

The last workshop of the night was called PMDD Date Night, led by sex therapist and mental health counselor Chasity Chandler, who is based in Florida. She specializes in LGBT relationships, trauma, and substance abuse. She was the only one at the conference who addressed PMDD in transmasculine people and trans men she works with; other than that, the lectures and workshops were mostly directed toward cisgender people, revealing how late the PMDD conversation is to the party. (The conference wasn’t only lacking in advocacy for people of different genders who menstruate; class and race were also barely touched on throughout the conference’s programming, though the attendees were from diverse backgrounds. Hopefully as the PMDD conference expands — and since they’ve now launched globally — this oversight will change. It’s hard enough for a middle-class white woman to get treatment for PMDD, as our society naturally doubts female suffering, but women of color face an entirely different battle. Though a recent study found that black women are at a lower risk of developing PMDD than white women, women of color, and especially black women, are frequently misdiagnosed and undertreated for emotional disorders in general.) In her talk, Chasity focused on partnerships and said something that has haunted me since, which I later reported to Tony: “It sounds like a lot of you have supportive partners. Who supports the supportive partner? Often the PMDD-er knows exactly what they want and need. When was the last time you asked your partner what they needed?” She proceeded to explain that date nights don’t need to happen at night. They can be date brunches, date walks, date afternoons. She suggested rotating turns to plan one-hour, in-home date nights, and to never use dates for talking about your relationship. Chasity suggested having two jars: one with ideas for a high-energy date night, for when the woman is in the follicular phase, and others for a low-energy date night, when she is in the luteal phase. One woman dating a woman with PMDD said she wished she had a PMDD support group. She said it is unusual to come into a relationship where someone loves you and thinks you’re the greatest thing ever and then one day they just hate you. “The hardest part for me is that, being a logical person, not being able to reason with her, though she was so reasonable the day before.” “One of my clients spent $10,000 on a divorce lawyer while she was in one of those episodes,” Chasity said. “No joke. Seriously.” This workshop made me so sympathetic toward Tony. I wish he’d been there.

Alyssa Kirsten Chloe Caldwell (right) and Brett Buchert at the 2018 PMDD Annual Conference.

Day 3 (Day 26 of cycling) Well, shit. I woke up with full-blown PMDD. I’d been worried this would happen. Having PMDD at a PMDD conference could not be more clichéd — it was like falling asleep at a narcolepsy conference. I was cranky and anxious, and my heart was beating quickly as soon as I opened my eyes. My skin was inflamed, red, and breaking out. I decided to let myself sleep in and miss the morning lectures on suicide ideation. I was in tears over…nothing. But for me, having tears over nothing is a good sign. In the past, my tears have come out as rage and blame and I’ve projected those emotions onto Tony. It was huuuuuuge growth for me to realize I was just sad and edgy because I was going to get my period any day. Tony and I spoke on the phone to say good morning, and that’s when I felt the sensitivities coming on. On another day, his tone of voice wouldn’t be an issue, but on Day 26 of my cycle, it feels like the world is falling apart (I mean, it kind of is) and I am up for a fight, and I am going to win. Tony and I have made a deal that, through our travels, we won’t (I won’t) text thoughts that should be saved for bigger conversations to have in person. But when my PMDD acts up, this all goes out the window because I love a good text evisceration. In PMDD brain, I ruminate on anything he’s ever said that has irked me and tell him about them. When I started doing so in my hotel, Tony texted me back “STOP” along with the red stop-sign emoji and a bitmoji of him as a cartoon character getting hit with a bomb. I decided to go eat breakfast alone, ignore my phone awhile. I ordered a coffee and oatmeal skillet, and was on edge and ready to burst into tears. The waitress was trying to chat with me about the book I was reading and it made me emotional. I went to cry in the bathroom. Laura saw me there and asked if I was okay. I said I was but that I needed a little time. Her tote bag read Be Kinder to Your Vagina. “Yeah,” she said, “That was pretty triggering for everyone.” I felt pretty lame and dishonest that I was only triggered by my hormones, not the suicidal ideation lecture I’d skipped. I felt like a liar for not admitting I hadn’t gone. Upstairs at the lecture hall, I was greeted with such love. Amanda and Laura were there. Amanda has the most insanely gorgeous smile I’ve ever seen in my life, and I burst into tears when she hugged me. When someone who is really real, vulnerable, and in touch with themselves asks me if I’m okay, I lose it. I started crying. I forced myself to stop but could have kept going. Honestly it felt good. They looked worried and like they cared about me. Amanda said something they’re trying to do for next year is have a room of peer support counselors for this exact situation. It was funny to be around women who are so well versed in PMDD language. It reminded me of when people say if you want to learn a language, go live in the country and be around it. Here, you could not escape period, diet, or self-care talk. This is some people’s idea of heaven, some of hell. I fall somewhere in the middle, depending on my mood (which I think we’ve established changes every other second, which is the reason I was there).

Alyssa Kirsten A woman speaks at the 2018 PMDD Annual Conference.

“I’m cycling,” was a phrase I’d never heard before that I began hearing everywhere. “Sorry, I get chatty when I am in the luteal phase,” Katie said. Until three months ago I’d never even heard of the luteal phase. “I’m on that day of my cycle where you can’t sit still.” “What day is that?” I asked. “21.” “I’m on 25.” Some people were popping 5-HTP and avoiding gluten and others were saying they can easily avoid gluten and dairy and eat a bunch of kale until they’re in the luteal phase, when they’d order big cheeseburgers. There were women with dark chocolate in their purses; I asked for a piece from one of them. Some women were cranky because sleeping in dry hotel rooms is hard, and rooming with their mothers is also hard. Some women had aromatherapy oils they passed around for the rest of us to rub on our wrists. Some women were vocal about needing more caffeine. Some women were pregnant. All women were cycling. Amanda and Laura told me to take an Uber to the beach, put my feet in the ocean, walk on the sand. I didn’t want to go that far, literally and metaphorically, but I did change into my favorite long pink dress, bought some sunscreen out of the vending machine, and laid by the pool listening to Shakira’s album Laundry Service, which I’ve recently figured out does wonders for my mood (don’t ask, I don’t know). Tony called and we had a talk, which didn’t go awesome, but we’ve had worse. We got out of the hole successfully and I went into my first lecture of the day even though I was four hours late. I didn’t want to miss Jenni Kay Long, who was presenting a lecture called “Navigating PMDD With Mindfulness.” Jenni Kay Long is a therapist in Denver with PMDD. Her PMDD symptoms began at age 12, and her panic was so debilitating she couldn’t walk from her bedroom to the bathroom without fainting. In her twenties, to manage her symptoms she was going to yoga five times a week, and going to acupuncture and talk therapy. The number of days she had symptoms each month began to shrink, going from two weeks a month to one week, then to three days. She was passionate in helping others with PMDD, so she got her yoga teacher training certificate, her acupuncture license, her social work degree. “That’s what all those ridiculous letters after my name are,” she explained, “I wanted to get all of the things for myself that had helped me.” She offers all of these treatments under one roof (which sounds like absolute heaven to me). Jenni Kay was pregnant with her second child at the conference and had one of the sweetest speaking voices I’d ever heard. “Every symptom you have is a need that isn’t being met,” she said. For example, you could be experiencing heavy cramps because you are lacking magnesium. You could be experiencing hyperarousal and panic the days leading up to your period, caused in conjunction by the dip in estrogen and marked increase in progesterone — but combined with a trauma from your childhood, you have not fully healed, so you can experience symptoms like impulsivity, hypervigilance, defensiveness; feeling unsafe, reactive, angry; and having racing thoughts. This is why, she explained, that a layered and holistic treatment approach to PMDD is most effective. “From Acupuncture to Zoloft, A–Z Treatments for PMDD” was the final panel. Toward the end, a woman from the audience raised her hand and said: “There is absolutely hope. I never thought I’d find someone because I try to talk him out of being in a relationship with me all the time and he continually tells me, ‘hey, you’re worth it.’ So there are people who see us — the true us. So don’t let our disease or condition deter you from trying to have a meaningful relationship, because for me that’s part of the healing, and love is the antidote to shame.” The rest of us applauded.

Alyssa Kirsten A woman applauds at the 2018 PMDD Annual Conference.

My workshop was the last one of the conference. I was too tired and drained to be nervous. I was beat. I didn’t do a PowerPoint or use the whiteboard, but I used the microphone. I read from my personal essays about PMDD, which was interesting, to give a reading about something so specific to people who experience the same exact symptoms. In the creative nonfiction classes I teach, I do a prompt called I Remember, taken from Joe Brainard’s 1972 memoir of the same name. In the book, Brainard begins every sentence with “I remember,” and it is a nonchronological detailed account of his coming of age. Usually in my classes, I have the students do an I Remember about anything they want, but tonight the assignment was specific: Write an I Remember about your first period. Even if you don’t really remember. Even if it’s hard. Even if it hurts. Sometimes I’ll get a class where no one wants to read their work. This drastically changes the dynamic of class, not to mention the lesson plan. In a class where no one offers to read and everyone is timid, I’ll have so much extra time unaccounted for. But that night, almost everyone wanted to read. They passed the microphone around with gusto and spoke confidently, expressively. Some people choked up, some laughed. Although I’ve been steadily teaching memoir writing for three years, and although it is not a competition, this was one of the more moving nights in my life. Because everyone wanted to read their work, we didn’t get to the other prompts I’d planned: Write a letter to your PMDD self from the perspective of your higher self. Write a letter to someone you’ve hurt while in PMDD brain. Make a list of tools you can use for the next time you’re experiencing full-blown PMDD. I skipped all of those for time’s sake and pulled out self-compassion cards, handing them out until everyone had one. I’d purchased them for Tony for Christmas but he never used them, so I packed them in my suitcase at the last minute. The cards read things like: What wish would you make for your teenage self? Consider one of your role models. What are three things you have in common with them as a human being? Is part of your body calling out in pain or discomfort? Can you just be with it without trying to change it for five breaths? Afterward, people came up to me and told me how powerful my workshop was. It was a revelation — a “growth spurt” I called it later, when talking with Tony on the phone — to realize I can be struggling yet still help those who struggle. Simultaneously. Do you ever have those times when you feel you are exactly where you’re supposed to be? They come around a few times a year for me, more if I’m lucky. Those times you feel good in your body, no FOMO, grounded, loved, and loving. The moment you know you are on the right path. That’s what happened to me that night, post workshop. About 10 of us went into the hot tub and drank tequila and wine and talked until after midnight. I went to bed first, and Katie, who I gave my extra bed to, came to the room an hour later. We talked until we fell asleep, like old friends. Around 5 a.m. the fire alarm went off and we all groggily walked outside to the front of the hotel until staff confirmed it was a false alarm. It was fitting, after the level of intimacy we’d achieved over two days, to see everyone stripped down with naked faces, eye masks, flip-flops, robes, and boxer shorts.

Alyssa Kirsten From left: Tory Eisenlohr-Mosul, Amanda LaFleur (co-founder), Sandi Henderson (board president), Donna Micheletti, Sheila H. Buchert, and Brett Buchert.