This Disorder Affects Millions Of Women, And No One Is Talking About It. Why?
by Amy Leisner and Marissa Pomerance
“Must be that time of the month!”
This has always been used as a passive-aggressive shorthand for moodiness or irritability. As young girls, we’re taught to believe that mood swings around your period is normal. Getting cramps and feeling pissy is just par for the course.
But what if it’s more than that?
What if, for two weeks out of the month, your symptoms are so severe that they disrupt your life, sabotage your relationships, and send you into a spiraling state of severe depression?
That’s not just PMS. That’s PMDD— premenstrual dysphoric disorder. It’s like PMS on steroids. It affects 3-8% of menstruating people, which is about 6 million people.
But here’s what few people really know about PMDD; it can cause extreme behavior. And it’s very misunderstood.
PMDD is more than just mild mood swings. And it’s often misdiagnosed.
PMDD encompasses some of the well-known PMS symptoms, but it also comes with some serious mood disturbances.
Usually, it starts with an increased sensitivity to hormones in the weeks leading up to a period, which can actually alter the brain chemicals that affect mood.
And these mood changes can lead to such extreme changes in irritability, reactivity, anxiety, depression, and sensitivity, it can affect our relationships, our job, and our interpersonal functioning. These psychological symptoms can be so extreme, that— warning, this is a very sad statistic— 15% of people with PMDD have attempted suicide.
According to Dr. Eynav Accortt, clinical psychologist and the director of the Reproductive Psychology Program at Cedars-Sinai, “PMDD is unique in that symptoms only occur once a month, but it’s a mental illness, and all mental illnesses can affect interpersonal relationships. PMDD is also associated with significant personal and economic costs, increased work absenteeism, reduced work productivity, and reduced quality of life.”
But PMDD is still misunderstood. “When I started in this field in 2002, there was very little research on PMDD. It was not even included in the DSM,” says Dr. Accortt.
And because there are no definitive tests for PMDD (and, ya know, women’s health problems are often overlooked or dismissed as hysteria), women are often misdiagnosed as “bipolar” or just told that these are “normal” hormonal changes, and to not worry about it. “Unfortunately, many individuals who suffer from PMDD learn to hide their symptoms as much as possible and suffer in silence,” says Dr. Accortt.
Which is a huge problem. Because PMDD is biological, in addition to being psychological. Recent research has shown that PMDD derives from certain genes that affect the way someone’s body responds to hormones and stress. And yet, the symptoms are often treated like inexplicably hysterical behavior, invalidating the experiences of millions of women.
How do you know if you have it?
Typically, PMDD will start showing up sometime in your early thirties and can last through menopause. Basically, if you bleed every month, PMDD could affect you.
If you do have it, you’ll notice the symptoms about 2 weeks before your period, and they’ll calm down a couple of days into your period.
Read that again. These debilitating symptoms last for 2 weeks before your period. That’s half of the month impacted by this disorder.
If you feel like your PMS symptoms are much much more severe than your friends, it could be PMDD. Remember, PMS symptoms typically start 5-10 days before your period and PMDD symptoms start a full two weeks before your period. If the time-frame of your symptoms is longer than “normal,” this could be a sign of PMDD.
Here are some of the other symptoms to look out for:
Physical
Gastrointestinal issues, like constipation, diarrhea, nausea, or vomiting
Heart palpitations
Changes in your appetite
Joint or muscle pain
Muscle spasms
Reduced sex drive
Insomnia or trouble sleeping
Emotional
Drastic mood swings
Feeling really sad all of a sudden
Being extra sensitive to rejection
Feeling extra irritable leading to down-right rage
Severe depression or suicidal thoughts
Feelings hopelessness
Anxiety that’s worse than usual
But as we said, diagnosis is…not easy. So do your homework. Become familiar with the steps to diagnosis. Here’s a great place to start.
Here’s what to do about it.
For some, the toughest symptoms to manage aren’t just the biological ones, they are the psychological and social symptoms— the anger, the irritability, and the way those emotions affect interpersonal relationships.
“What I have learned and what I have found in my own research studies, is that irritability is really the number 1 symptom,” says Dr. Accortt. “One absolutely needs to manage their emotions. We all do, even if we don’t have PMDD. We can’t go through life and have successful relationships if we allow our strong emotions to regularly impact others negatively. So certainly someone who has a mental illness absolutely needs to manage their emotional dysregulation.”
So how do you do that? “Absolutely there are solutions, and the solutions are treatments for the individual that has PMDD. And that’s how they manage their impulsivity and anger—they get treatment for it,” says Dr. Accortt.
Support from family and friends is also incredibly important, especially when it comes to maintaining healthy interpersonal relationships with PMDD. “Some education is really needed so that the loved ones can understand that this isn’t just PMS. It’s important for parents or spouses or children to understand that this is a mental illness, and what the symptoms are.” This website has some great tools to share with family and friends.
Dr. Ramani Durvasula, a licensed clinical psychologist, believes that therapy might be helpful for family members of PMDD sufferers. "It is important that the family have the opportunity to get their own therapy or related support as a place to share their feelings—ideally with a highly skilled therapist who understands these patterns,” she explains.
PMDD is all about management. And here are a few things that might help:
Track your period: You can track this stuff however you want, but if you prefer using an app, we like Flo. This website also has some amazing tools for PMDD tracking, specifically. Being diligent with this tracking is going to help paint a clear picture of your experiences for your doctor when you go in to see her.
See your doctor: It’s obvious, but go see your doctor and get diagnosed. And if you feel like that doctor isn’t listening to you or taking your issues seriously enough, find someone who will. Dr. Jennifer Lincoln, and OBGYN, recommends having your doctor check for other issues like anxiety, depression, and thyroid problems first. This is also the time when you talk about the symptoms you’ve been tracking over the past couple of months.
SSRIs: Dr. Accortt suggests talking to a doctor about SSRIs, because “they work in a unique way for PMDD. If you take SSRIs for depression, it usually takes 2-4 weeks for them to kick in and to have symptom relief. But with PMDD, it is almost immediate. It doesn’t take 2-4 weeks. Women can take SSRIs about 2-3 days before their luteal phase would begin, and they can take them for 1 week, and they would have symptom relief almost immediately that would last for that one week, and then they can stop taking it until their next luteal phase. They’re effective, and you don’t have to be on them for the rest of your life.”
Oral Contraceptives: Oral contraceptives are a go-to, and some of them work really well for PMDD, according to Dr. Accortt. “Some OBGYN’s might recommend taking oral contraceptives continually, meaning you don’t take the last week of non-hormonal sugar pills, you take the 3 weeks of active hormones, then jump right into the next pack, and start the next month of active hormones immediately. What that does is it stabilizes your hormone levels— because it’s not the overall levels of hormones that trigger the symptoms of PMDD, it’s the ups-and-downs of the hormones,” she says.
Psychotherapy: Dr. Accortt also recommends “psychotherapeutic options like cognitive behavioral therapy (CBT) or interpersonal psychotherapy (IPT), which are both effective and empirically validated.”
Modify your diet: People might tell you to avoid things we love like caffeine, sugar, and alcohol. Ignore them. The only thing backed by scientific evidence that might help PMDD is eating more high-protein foods or complex carbohydrates to raise levels of tryptophan which is a precursor of serotonin.
Exercise: *Eye roll.* We know. That’s what they tell us to do to help everything. Even though it hasn’t been studied specifically to treat PMDD, there is plenty of evidence showing that aerobic exercise is a natural mood-booster and can at least help ease more standard PMS symptoms.
Try adding supplements: Unfortunately, as is the case with a lot of disorders that only affect women, there’s just not enough definitive research out there to show compelling evidence on what works. But, vitamin B6, calcium, and magnesium supplements have at least been studied for PMDD, so they’re worth a try. Micronutrients are pretty fantastic for a lot of things, actually.
Use IAPMD as a helpful resource: “IAPMD is a wonderful organization, and you’ll find a lot of information and support here. Not only can you get help from your OBGYN, from a psychiatrist, from a psychologist, but your spouse and children, there’s support and there’s help for you guys to communicate about your disorder,” says Dr. Accortt.
It’s another women’s health problem that needs to be de-stigmatized.
We can all agree that not enough people are talking about this disorder. So let’s start talking. If you’re up for it, sharing your experience with PMDD could be a lifeline to you and someone else. Talk to your friends about it, ask your family for support, join Facebook Groups that resonate with you, or post about it within your own online community.
The most important thing to take away from all of this is to trust yourself. Be your own outspoken health advocate. And know that the extreme psychological symptoms might just be biological, ie, don’t let people tell you that you’re “crazy.” You’re not crazy. Your period shouldn’t be sabotaging your life. And if you feel like it is, it could be PMDD.
Also, it’s 100% okay to never laugh at an out-of-touch “must be that time of a month” joke ever again.
