Misty McLoughlin knew that her monthly mood swings weren't normal. For seven to 10 days, she'd struggle to get out of bed and fight constantly with her husband and kids. "I couldn't even listen to people chew without going crazy," she says. "I didn't want to be touched. I didn't want to talk. I just wanted to be left alone."
Her doctor thought she might have postpartum depression because her irritability had become worse since the birth of her third child. But McLoughlin, now 38 and a stay-at-home mom and part-time Zumba teacher in Chesapeake, Virginia, knew this wasn't depression because she didn't always feel bad. Her symptoms came and went.
Her doctor also suggested that she might have bipolar disorder, but that didn't feel right to McLoughlin either. So she did her own research and began tracking her daily emotions – along with her menstrual cycle – in a journal. She quickly noticed a pattern: Every month, her mood and energy levels would decline a day or two after ovulation and return to normal a week and a half later, after her period started.
McLoughlin brought her journal to a psychologist and finally got a diagnosis that felt right: premenstrual dysphoric disorder (PMDD), a debilitating and often misunderstood condition that affects an estimated 3 to 8 percent of women.
PMDD is more than bad PMS
PMDD is sometimes referred to as severe PMS. But in 2013, it was officially recognized with its own entry in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), the classification of mental disorders used by psychologists and psychiatrists in the United States. Previously, PMDD had been listed only as a subset of depression.
With the DSM-5 change, providers now have clear guidance for identifying patients with PMDD – and for distinguishing PMDD from the milder, and much more common, symptoms of PMS.
"Something like 90 percent of women have some symptoms before they get their period, and those symptoms are predominantly physical," says Andrea Chisholm, MD, an obstetrician and gynecologist at Cambridge Health Alliance in Cambridge, Massachusetts. "But when symptoms have a prominent mood component and are really affecting quality of life, that's when we start to consider PMDD."
To get a PMDD diagnosis, you need to have at least five symptoms related to changes in mood, anxiety, energy, concentration, appetite, sleep patterns, or physical manifestations (like pain and bloating). These symptoms must be present during the week before you get your period, start to improve within a few days after your period starts, and be minimal or absent the following week.
Finally, those symptoms must cause you significant distress or interfere with your normal activities and relationships. And if they do, you should definitely reach out for professional support. In a 2012 Yale University study, 16% of women with PMDD had attempted suicide, compared to only 5% of women with no premenstrual symptoms.
It's important to distinguish between symptoms of PMDD and symptoms of other chronic mental health conditions (such as anxiety or depression) that are present all month long but get worse with premenstrual hormone fluctuations, says Chisholm. To do so, it can help to keep a symptom diary for two consecutive cycles, so your doctor can evaluate your emotional and behavioral patterns.
For McLoughlin, symptoms start gradually each month. "The first couple of days, I just don't want to be bothered by anyone," she says. "By days five, six, seven, you really don't want to be around me. I'm hell on wheels." Then she gets her period, which causes exhaustion and physical discomfort, but at least her mood lets up. "Then I feel great, apologizing to everyone about how I was the week before."
PMDD controversy and challenges
Experts don't know why some women get severe PMDD symptoms and others don't, but research shows that the disorder may be at least partially genetic. The results of a recent government study showed that women with PMDD experience abnormal cellular activity that may make them more sensitive to hormonal changes, and identified a specific network of genes that appears to be responsible.
"All women experience hormonal ups and downs throughout their cycle," says Chisholm, "but we know that women with PMDD have different responses in areas of the brain that control mood and social interactions." And the message that PMDD is about biology, not behavior, is an important one, she says. "People might say to these women, 'You're just hormonal. Get over it.' That's like telling someone with diabetes to get over being diabetic."
Still, the decision to classify PMDD as a psychiatric illness has not been without controversy. And differentiating between normal moodiness, PMS, and PMDD can be difficult, even for experienced practitioners.
"We're trying to strike a balance between not wanting to overdiagnose or overpathologize something that is arguably a normal part of the female experience," says psychologist Tory Eisenlohr-Moul, PhD, a postdoctoral scholar at the University of North Carolina at Chapel Hill's Center for Women's Mood Disorders and author of a new scoring system for providers to use in diagnosing PMDD. "But on the other hand, we want to make sure women who need diagnosis and treatment get it."
Many doctors have little to no experience with the disorder, says Chisholm, and it's not "owned" by any one field of medicine. "I see a lot of women who have been bounced back and forth in the primary care setting," she says. "There's a bit of a referral merry-go-round – they get sent to psychologists or psychiatrists for emotional symptoms and to gynecologists or GI doctors for physical symptoms."
Even women who have a PMDD diagnosis can have trouble finding a doctor who's experienced and willing to work with them to find a treatment.
"I've had to tell my story so many times," says McLoughlin, who has moved several times because of her husband's military job. "I've had doctors Google PMDD while I was sitting there. It's a horrible feeling: You're coming to [this person] for medical [advice], and they're starting from the ground up."
Treatments are available, but not everyone responds the same way
Some women with PMDD improve when they're put on a hormonal contraceptive, which keeps estrogen and progesterone levels steady throughout the month. But for some women, says Chisholm, this type of hormonal regulation can make things worse.
Antidepressant medications that target serotonin levels in the brain, such as citalopram (Celexa), fluoxetine (Prozac or Sarafem), and sertraline (Zoloft), are also helpful for many women with PMDD. Doctors may prescribe them to be taken all month long, or only during part of the month when symptoms occur.
Some women are hesitant to try antidepressants because "they think we're calling them crazy, or that we're just masking their bad moods," says Eisenlohr-Moul. "But that's not the case: These drugs actually have direct biological actions on the cause of their symptoms – the metabolites of progesterone."
If these treatments don't help, suppressing hormone production entirely is the next step to relieve PMDD symptoms, says Chisholm. Some women even consider having their ovaries removed.
McLoughlin hopes it won't come to that, but says her quest for the right treatment is still ongoing. She tried birth control pills, but they made her mood swings worse and more frequent. Prozac worked well for two years, but her current insurance company won't approve brand-name drugs, and the generic formula makes her nauseous.
Now she's considering injections of Lupron, a type of drug known as a gonadotropin-releasing hormone (GnRH) analog. These drugs suppress estrogen production by the ovaries, essentially sending women into early menopause.
"I hear really good things about women who do phenomenal on it, but I also understand there are side effects, like bone density loss," she says of the Lupron shot. "I'm still little leery about it, so I'm getting a second opinion before I decide what to do."
Advice for coping and seeking treatment
PMDD takes an emotional and physical toll not only because of the symptoms but also because of the stigma and misunderstanding surrounding the condition. If you're struggling, here are some steps that might help.
Prepare for your appointment. If you suspect you have PMDD, giving your doctor as much information as possible about your symptoms may help you get a speedier diagnosis. Download a printable tracker or a period-tracking app like Clue, says Chisholm. (If you're having thoughts about harming yourself, call your doctor or 911 immediately. Don't wait for an appointment.)
Get the right kind of help. If your current doctor can't address your symptoms, ask for a referral for someone who can. "You may need a psychiatrist to recommend a medication regimen, or to a psychologist to work with you on emotional regulation skills," says Eisenlohr-Moul. The Gia Allemand Foundation (formerly the National Association for Premenstrual Dysphoric Disorder) publishes an online provider directory to help women find experienced specialists in their area.
Reevaluate your diet. A healthy lifestyle may not cure you, but it can reduce harmful inflammation and keep your symptoms from getting worse, says Chisholm. Also, talk to your doctor about taking supplements: Chasteberry extract has been shown to relieve physical PMDD symptoms, says Chisholm, and she also recommends taking daily doses of calcium, magnesium, vitamin D, and vitamin B6 in consultation with a healthcare provider.
Consider therapy. Cognitive behavioral therapy, or talk therapy, can be helpful for many women who feel overwhelmed by their PMDD. "It not only helps women cope, but it can also help them reduce their stress levels, which can have very pervasive biological effects," Eisenlohr-Moul says. Activities like yoga and meditation might help as well.
Build a support network. The Gia Allemand Foundation is a rich resource for Facebook groups, peer support, and educational information about PMDD. (Chisholm is on the board of directors.) "There's nothing like talking to somebody who's been through the same thing that you have, has tried the same treatments, who's frustrated about the same things," says Eisenlohr-Moul.
Make adjustments. It can be helpful to plan ahead and avoid stressful situations when you know your PMDD will be bad. "If you have two days a month that are really intense, and you decide not to schedule any important meetings that day, or work from home, or have your parents take the kids, that could be a really efficient coping mechanism," says Eisenlohr-Moul.
Know when to get professional help. If your symptoms start to interfere in bigger ways – by lasting longer, for example – avoidance can quickly turn from a healthy coping strategy into an unhealthy pattern. That's when it's important to work with a mental health professional to find better ways to manage your PMDD and live a more comfortable life.