‘I had no idea what was happening’: PMDD can be life-threatening, yet many women remain undiagnosed for years
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Statistics show that 1 in 3 women with premenstrual dysphoric disorder (PMDD) will consider suicide, with 72% experiencing thoughts of self-harm.
Amanda Long, 28, can relate to these alarming figures personally.
At the age of 14, her first menstrual cycle triggered crippling symptoms. She faced increasing anxiety, severe depression, and binge eating, but could not understand the cause of her struggles. During a particularly intense episode of depression, she found herself believing the world would be “better off without her.” In her senior year of high school, she nearly attempted suicide.
“If I had been thinking clearly, I wouldn’t have even contemplated that,” Long reflects. After her depression improved, she mistakenly thought she was free from her struggles—until the luteal phase of her menstrual cycle came around again.
Eventually, Amanda discovered treatment options to help her cope with her symptoms. However, many women remain undiagnosed with PMDD, often due to insufficient education and medical dismissiveness, leading to an average delay of 20 years for diagnosis.
What exactly is premenstrual dysphoric disorder (PMDD)?
PMDD is a severe variant of premenstrual syndrome (PMS) that affects around 3-9% of women of reproductive age.
Categorized as a “depressive disorder” in the DSM-V, PMDD symptoms emerge during the luteal phase of the menstrual cycle and typically resolve within a few days after menstruation starts.
Symptoms can include mood swings, feelings of hopelessness, anxiety, irritability or anger, sleep disturbances, increased relationship tensions, and other depressive symptoms. While its exact cause is not well understood, PMDD may be connected to the body’s abnormal responses to the fluctuating levels of estrogen and progesterone during the menstrual cycle, which could lead to serotonin deficiencies in the brain.
Dr. Franziska Haydanek, an OBGYN and online health educator, explains that PMDD is frequently misidentified as other mood or anxiety disorders, like major depression or bipolar disorder, or simply dismissed as normal PMS.
<p“It’s essential to track your symptoms in relation to your menstrual cycle,” she advises. “If these patterns occur every four weeks, likely, it’s PMDD rather than something else.”
Megan Rogers, 26, who lives with PMDD and uses TikTok to inform others, notes that while PMDD is linked to menstrual cycles, getting a diagnosis often requires input from multiple medical professionals.
“There’s minimal accountability in addressing it,” Rogers points out. “Our medical system tends to be siloed, and a condition like PMDD encompasses many areas; thus, no single form of therapy will adequately resolve it.”
Combining serotonin reuptake inhibitors (SSRIs) with hormonal birth control that prevents ovulation is a common treatment approach for PMDD, with some early research suggesting benefits from holistic methods as well.
“A collaborative effort is key, and finding healthcare providers willing to adopt this approach is crucial,” Haydanek explains. “Some OBGYNs may hesitate to prescribe SSRIs, whereas psychiatrists might be reluctant to prescribe birth control pills.”
‘I was in the dark for most of my life’
For over ten years, Long remained unaware that her struggles were linked to her hormonal cycles. At 15, she switched high schools, believing her depression stemmed from her surroundings. Her school attendance plummeted, leading to meetings with school administrators, which only added to her feelings of shame and confusion.
“Back in 2009 when I first felt the effects of PMDD, we didn’t even have the vocabulary for it. It wasn’t recognized in the DSM or the WHO,” she recalls. “Even if people around me noticed something was wrong, I lacked the words to express what I was going through, and so did they.”
During depressive episodes, her serotonin levels would drop, causing her to reach for sugary foods and binge eat, which exacerbated her mental health issues.
“I was trying to comfort and numb myself while worsening my hormonal imbalances with excessive sugar intake, which only intensified my PMDD,” she explains.
It wasn’t until her twenties, after using a tracking app to monitor her cycle and mood, that she connected her mental health struggles to her luteal phase. After thorough research, she presented her symptoms to a gynecologist and received a PMDD diagnosis earlier this year.
Similarly, Rogers first experienced symptoms at 13, discussed them with her gynecologist at 18, but didn’t receive a diagnosis until she was 24. For 11 years, she felt as though she was living a lie.
“I should have been diagnosed based on what I described, but I wasn’t. They merely said, ‘You just have a tough period,'” she shares.
Having received a proper diagnosis, Long has now been able to create a comprehensive treatment plan to help her manage PMDD effectively.
“I feel like I finally have clarity,” Long expresses. “However, for approximately half of my life, around 14 years, I was in the dark. I’m still processing everything that has transpired.”
Currently, she has been free of symptoms for one month.
Numerous women are still waiting for diagnoses
Meanwhile, 28-year-old Rachel Franklin believes she has PMDD but has had difficulty finding a healthcare provider who will listen to her concerns. Since her teenage years, she has sensed that something was “seriously off,” but couldn’t articulate it properly. “I felt like I was losing my mind before my period,” she shares.
When Franklin mentioned her suspicions about PMDD to her primary care doctor, she was referred to a psychiatrist, who speculated she might have a different condition that Franklin felt didn’t match her symptoms.
“Now, I’m keeping a detailed log of all my symptoms,” she explains. “I want the diagnosis to gain some clarity. I need closure to finally understand what’s wrong with me.”
She remains optimistic that an upcoming appointment next month might finally bring her some insights.
‘Gaslighting is a constant issue, but education is key’
For these women, lacking the proper terminology to identify or discuss their condition has proven just as challenging as the symptoms themselves.
“Gaslighting regarding women’s pain is always present,” Rogers remarks. “But a significant part of the problem is the overall lack of awareness.”
As Haydanek points out, medical professionals are obligated to engage in ongoing education annually. This year, training options have included a piece on PMDD.
“OBGYNs are always striving to update our knowledge,” she says. “However, there is always room for improvement.”
Long agrees that having more information about PMDD, such as being educated about it in middle or high school health classes, could have “altered the course” of her life. Now, she wishes for fewer women to endure the same struggles she faced.
“The toughest aspect of this condition is enduring an episode. The next most difficult part is recognizing the symptoms for a diagnosis. Afterward, finding effective treatment is challenging,” Long states. “The encouraging news is that it is completely treatable, and recovery is absolutely possible.”
