When Amanda LaFleur quotes the PMDD statistics for America, she quickly adds an asterisk.
The medical community estimates 3 to 8 percent of cisgender women of reproductive age have premenstrual dysphoric disorder (PMDD). But that figure may be a wild underestimation of the number of cisgender women, transgender men, and non-binary folks who do battle with the condition every month, says LaFleur, who is the co-founder and executive director of the Gia Allemand Foundation, a non-profit focused on reducing the stigma and raising awareness of reproductive mood disorders, suicidality, and depression.
The foundation is named for Gia Allemand, an actress whose death by suicide rocked the country, her family, and her friends in 2013. Allemand had been diagnosed with PMDD before her death, putting her in that 3 to 8 percent. But PMDD is a condition that many folks don’t realize exists at all, and misdiagnosis is rampant, LaFleur says.
So what is PMDD? And why is it so hard for those who have it to find help? We asked the experts to shed a little light on the mental health condition and how to get treatment if you need it.
What is PMDD?
Most people have heard of PMS or premenstrual syndrome, the symptoms that crop up anywhere from a week to a few days before your period starts. You may feel bloated, have cramps, and even have some mood swings.
PMDD is not PMS. At least not exactly.
Someone with premenstrual dysphoric disorder may have some of those symptoms, and they will show up in the week prior to menses, but PMDD is both more severe and more debilitating, says Cindy Basinski, MD, an OB-GYN from Newburgh, Indiana.
“The symptoms experienced are more severe in PMDD as they affect the ability of a woman to perform normal daily activities,” Basinski explains. And while as many as 80 percent of women experience PMS on a regular basis, PMDD is considerably more rare.
What sets the two apart?
PMDD is characterized by five or more of the following symptoms, says Nicole B. Washington, DO, a board-certified psychiatrist from Broken Arrow, Oklahoma, and chief medical officer at Elocin Psychiatric Services:
- Mood swings
- Sudden sadness
- Increased sensitivity to rejection
- Anger or irritability
- Depressed mood
- Sense of hopelessness
- Self-critical thoughts
- Anxiety or feeling on edge
- Impaired concentration
- Change in appetite or food cravings
- Decreased interest in usual activities
- Low energy
- Feeling out of control
- Breast tenderness
- Aching joints or muscles
- Impaired sleep
The symptoms typically disappear as soon as the period starts or within a day or two of the first sign of blood—only to return again a month later.
Exactly why PMDD happens to some people and not others isn’t fully understood in the medical community, although Washington says it’s thought to be triggered by changes in sex hormones during what is known as the luteal phase of the menstrual cycle.
“This only occurs in susceptible women, but what we don’t really know is what makes one woman susceptible over another,” Washington says.
That’s not for lack of trying by scientists. The more awareness there is of PMDD, the more researchers are trying to suss out what happens to patients in the days and weeks before their period. A National Institutes of Health (NIH) study released in 2017 seems to have keyed in on one of the major components: a hormone susceptibility that only PMDD sufferers have. The scientists said their findings indicate molecular differences detectable in the cells of those with PMDD.
“We found dysregulated expression in a suspect gene complex, which adds to evidence that PMDD is a disorder of cellular response to estrogen and progesterone,” Peter Schmidt, MD, of the NIH’s Behavioral Endocrinology Branch, said in an NIH press release. “Learning more about the role of this gene complex holds hope for improved treatment of such prevalent reproductive endocrine-related mood disorders.”
Getting a PMDD Diagnosis
The path to diagnosis should be simple enough. PMDD is in the Diagnostic and Statistical Manual of Mental Disorders (DSM–5), the official guide of the American Psychiatric Association.
But Washington says the frequency of misdiagnosis comes down to issues on both the patient’s and the provider’s part.
“[The patient] may not be thinking that happens around that time of the month,” Washington says, “And the provider may not think to ask.”
In part, LaFleur blames this on a profound lack of understanding of how PMDD differs from PMS. People who struggle in the run-up to their menstrual cycle often doubt themselves, she says, even blaming themselves for not being able to pull themselves up by their bootstraps and muddle through a time of the month that’s hard on just about every person in their shoes.
“So many go through life thinking, ‘Oh, everyone goes through PMS, I’m just being dramatic’,” LaFleur says. In reality, a PMDD sufferer isn’t “just” going through PMS. While timing is the same, the symptoms are far more troublesome. That’s one of the cornerstones of PMDD itself: Symptoms have to interfere with life in order for the diagnosis to be made.
But the condition isn’t talked about very often—not nearly as much as PMS, which most Americans have heard of.
“It has the double stigma of the female problem of menstruation, which isn’t talked about because people think ‘ew, icky, blood, we don’t want to talk about that,’ and then you have the stigma of mental health on top of it,” LaFleur says of PMDD.
Even within the medical community, PMDD patients face stigma. As recently as 2002, the American Psychological Association ran an article in which some psychiatrists and psychologists said PMDD should not be classified as a mental illness at all.
Add to that the fact that some PMDD symptoms can crop up with other mental illnesses, and it’s no wonder there are misdiagnoses, Washington says.
In particular, LaFleur sees a number of patients who say they were first diagnosed with either borderline personality disorder or bipolar disorder before it was finally ascertained that they were experiencing PMDD.
According to Washington, borderline personality disorder is characterized by mood swings and extreme reactivity. Both are traits that crop up in PMDD sufferers. The difference? Personality disorders are what the medical community calls pervasive, meaning they are there all the time, rather than showing up only cyclically, as PMDD does.
Similarly, bipolar disorder is characterized by extreme mood changes that limit daily functioning—a symptom that can crop up with PMDD—but bipolar disorder is not related to the menstrual cycle.
Narrowing down the correct diagnosis can take time. Patients often don’t even recognize the tie to their menstrual cycle or have repressed it because of the fear that they’re blowing “normal” PMS out of proportion.
Washington says she encourages her patients to begin keeping a diary with their symptoms over a course of several months. She asks them to include important dates, especially the start and end of their periods, so she can see if there’s a link between the mental health component and a patient’s menstrual cycle.
Getting a patient the right diagnosis is crucial for myriad reasons.
First, treating someone for the wrong condition means putting them through unnecessary treatments, Washington says. The medicines used to treat bipolar disorder and borderline personality disorder are different from those used for PMDD, and getting the appropriate treatment right away spares someone having to deal with taking the wrong medication.
What’s more, getting the right treatment can help someone get their life back on track.
The Gia Allemand Foundation estimates that 15 percent of PMDD sufferers will attempt suicide, a shockingly high number that can be lowered by treatment.
Even for those who don’t face suicidal thoughts, the effects of PMDD can be life altering.
Carol (who has asked for her name to be changed) remembers the day she slapped her son in the face. It was the day before she called her counselor and asked for help.
“He was 3, and I thought he was trying to manipulate me,” Carol recalls. Now she realizes she was wrong to hit her child and to put that sort of burden on his shoulders, but at the time, she had no name for her feelings or means to control them.
Having one out-of-control moment that serves as a tipping point and sends them seeking help is common for PMDD sufferers.
“I can think of people who have been hospitalized, who have had marital problems, who have lost their jobs because they snapped at work,” Washington says—all this because they were experiencing untreated PMDD.
In Carol’s case, she’d always been susceptible to mood swings related to her hormones, but she says it wasn’t something her mother had ever talked to her about.
“We never really discussed that kind of stuff in my house,” she recalls.
When she went to find help, the counselor at first thought Carol was in a bad place in her marriage. But by the end of their second session, the counselor had pinpointed a problem related to her menstrual cycle.
“She said, ‘OK, now I see what is going on. I would like you to go see this gynecologist. She should be able to help you out,’” Carol recalls. She went to the OB-GYN, who directed her to keep a diary much like Washington’s patients, and then began treatment.
How to Deal With PMDD
In Carol’s case, treatment was a combination of birth control pills (meant to control her cycle to reduce hormonal ebbs and flows) and a prescription for a selective serotonin reuptake inhibitors (SSRIs), a medication typically used to treat depression.
It hasn’t cured her of PMDD, but it has curbed her symptoms immensely.
“My guys are fully aware of my meds, my freakouts, everything,” she says of her sons and husband. “I make sure they understand that it is my issue and overreaction and not them. I always explain how I was out of line. Sometimes I don’t say I am sorry because I don’t want them to feel as if they have to accept my apology. But I explain that my behavior was out of line.”
The medicine has enabled her to live with her PMDD without it massively impacting her life.
For some patients, more conservative PMDD treatments do work and work well, Basinski says; those can include increasing exercise, meditation, reduction of salt and sugar intake, and getting more rest. Some over-the-counter options, such as black cohosh and St. John’s wort, are also available, but data varies on their success in treatment.
For many patients, however, medication is required up until the beginning of menopause. Typically that means birth control in the form of oral contraceptive pills or hormone injections (such as the Depo-Provera shot) to regulate hormone levels, Basinski says, while some may opt for Mirena, an IUD that includes a hormonal component.
Some doctors may add an SSRI to the mix as well as or instead of the birth control pill. But unlike those taken by depression sufferers, sometimes the SSRI will be given only during the luteal phase of the cycle, says Lisa Valle, DO, an OB-GYN at Providence Saint John’s Health Center in Santa Monica, California.
For some people, like LaFleur, the next step is surgery. She opted for a full oophorectomy and hysterectomy several years ago, allowing doctors to remove much of her reproductive system, including her uterus and ovaries. This stopped her periods and the hormonal shifts that come with a menstrual cycle, ending her fight with PMDD.
It’s a drastic move, and one that LaFleur acknowledges is not appropriate for many people. It puts an end to any chances of carrying a baby and sends the body into menopause early in life.
But ending her own personal battle with PMDD has empowered LaFleur to fight for more cisgender women, transgender men, and non-binary folks in her position.
“I want them to know it’s not about mental strength. It’s not about willpower. You didn’t do anything wrong to have this happen to you,” she says.
And there is help out there. Beyond the treatment options, the Gia Allemand Foundation offers online support through its website, along with symptom trackers and other tools for PMDD sufferers.