Cramps? Check. Moodiness? Check. Suddenly overcome with a desire to inhale every piece of salty food in sight? Yup, the gang’s all here! Most women are familiar with the unwelcome feeling of PMS — those pesky signs that your period is on its way.
PMS is common, affecting around 75 percent of women with “regular menstrual cycles,” Alyssa Dweck, M.D., gynecologist at CareMount Medical in Westchester, N.Y. However, for a smaller number of women, the week leading up to their period can be so painful and debilitating that it interferes with their everyday life.
The culprit? The lesser-known, less-studied sibling to PMS: Premenstrual dysphoric disorder, or PMDD.
What exactly is PMDD?
It’s unclear how many women suffer from PMDD, but estimates put it between 3 and 8 percent. For women with PMDD, symptoms go beyond tender breasts and mild moodiness and may include severe irritability, depression, self-critical thoughts, and a sense of hopelessness. “Premenstrual irritability is the most common symptom,” Dr. Dweck says. She adds that symptoms are often associated with “significant distress or interference with usual activities, school, work, or relationships.” In other words, unlike normal PMS, PMDD can take a serious toll on your quality of life.
That sounds familiar to Jennifer Reiss, who started her period at around 16 and realized immediately that her symptoms seemed severe. “I was very irregular and every time I’d have one, I’d have severe cramps and moodiness, but I thought this was normal,” she says. “And I never talked about it with my friends.”
In college, Jennifer went on the Depo-Provera shot for birth control, which eliminated her period and her symptoms – until she was 27 and went off the shot for health reasons. At that point, she says, her symptoms came back with a vengeance.
“I’d hear people say, ‘Oh, my boobs hurt, or my cramps hurt, or I cried at a Geico commercial,’ but I’d be sitting here thinking, I can’t move because my cramps are so bad and I don’t care if I don’t wake up in the morning. I wouldn’t say I was suicidal, exactly, but I was okay with not waking up in the morning.” — Jennifer, 31
Thinking her symptoms were psychological, she went to a therapist who had her try behavioral therapy (to manage her thoughts) and Zoloft (for her moods). “I could tell the difference, but I didn’t get that much relief from it,” she says. And every month, when her period rolled around, her symptoms flared back up. Her therapist added Wellbutrin to her treatment regime. “I did everything I was supposed to” – Jennifer says. Still, nothing worked.
Jennifer had resigned herself to living with the pain and erratic mood swings forever when she went to her gynecologist, who had her track her symptoms in a journal for nine months. Finally, she had an answer: PMDD. With the diagnosis in hand, her doctor switched her to the Kyleena IUD, which has made her period and symptoms much more manageable.
Understanding the symptoms behind PMDD
Mary Jane Minkin, M.D., clinical professor of obstetrics and gynecology and reproductive sciences at Yale University, notes that Jennifer’s feelings of depression track with PMDD. “The depression women [with PMDD] get can be quite severe,” she says. However, she cautions that for it to truly be PMDD, the depression has to occur a few days before your period and then “basically be gone within a few days at the end of the period.”
She and Dr. Dweck both note that the criteria for a PMDD diagnosis is stricter than that of PMS (according to Self magazine, the American Psychiatric Association only officially labeled PMDD a depressive disorder in 2013). In order for your symptoms to officially be called PMDD, you have to experience one or more of the following symptoms:
●Mood swings or sudden sadness
●Anger or irritability
●Sense of hopelessness or depressed mood
●An increase in tension and anxiety
Other symptoms to watch out for (according to the American Psychiatric Association, you have to experience one or more of the below symptoms to reach a total of five):
●Change in appetite (for example, suddenly overeating or experiencing food cravings)
●A sudden lack of interest in hobbies and activities you used to enjoy
●Increased fatigue or tiredness
●Feeling overwhelmed or out of control
●Breast tenderness, bloating, weight gain, and joint or muscle aches
●Change in sleeping habits (this can include both sleeping too much or suddenly feeling unable to sleep)
If this sounds miserable, it’s because PMDD can be. Women with PMDD can find themselves struggling to hold down jobs and maintain their normal life. In 2015, one woman told Broadly that she thought of PMDD as “being like Alice in the looking glass. I’m in the same situation, but I’m two different people.” In 2018, Refinery29 spoke to several women about their experience with PMDD, all of whom told writer Lydia Morrish that they’d had to change their “work life and dreams to suit the disorder.”
Why aren’t more people talking about PMDD?
Yet, as Jennifer points out, PMDD isn’t well-known. “Literally none of my friends have heard of it, much less experienced it,” she says. Why don’t we know more about it?
It’s hard to say. It’s possible that it’s because PMS has “been around as terminology for many years, whereas PMDD is more of a psychiatric diagnosis and one has to stick with strict criteria to call it that,” Dr. Minkin suggests.
Dr. Dweck adds that she suspects it’s due to a combination of factors including the strict diagnostic criteria, general stigma around the disorder, and the fact that it’s often misdiagnosed as or overlaps with depression and anxiety.
If you have PMDD, the good news is that you don’t have to live with the pain forever. There are ways to treat it. One option is to try switching birth control methods as Jennifer did. Dr. Minkin notes that Yaz is often prescribed, possibly because it’s a progestin-based pill (Yaz is the brand name for drospirenone, the synthetic hormone the pill is made of) that acts as a diuretic — which may alleviate symptoms like bloating. She also recommends regular exercise, saying that while there’s not a ton of data behind this, it’s possible that incorporating some kind of aerobic exercise routine into your weekly workout may alleviate symptoms.
More importantly, if you’re reading this story and thinking, This sounds like me, talk to your doctor. And remember: you’re not alone, and PMDD is nothing to be ashamed of.
“A lot of women say it makes them feel weak because they can’t handle their period,” Jennifer says. “Like, ‘Everyone gets a period, why can’t I handle mine? Everyone functions with their period, why can’t I handle mine?’ I’ve had those thoughts too. It just makes [you] feel weird and inferior, and the PMDD makes those thoughts even more intense.”