Editor’s note: This article contains discussions about suicide and suicidal thoughts. If you or someone you know is having a tough time or is in crisis, support is available. You can call or text 988 or chat at 988lifeline.org.

Statistics reveal that 1 in 3 women experiencing premenstrual dysphoric disorder (PMDD) will attempt suicide, and 72% will have thoughts of ending their own lives.

Amanda Long, 28, is all too familiar with these statistics.

At 14, when her menstrual cycle began, she encountered severe symptoms. She dealt with extreme anxiety, followed by intense depression and episodes of binge eating, but had no idea why she felt this way. During a heavy depressive episode, she felt the world would be “better off without her.” During her senior year of high school, she almost attempted suicide.

“If I was thinking clearly, I would never have considered something like that,” Long recalls. When her depression faded, she believed she had recovered—until her luteal phase returned.

Now, she has discovered treatment options that help manage her symptoms. However, many women lack proper diagnoses for PMDD, attributing this to a shortage of education and instances of being dismissed by medical professionals, resulting in an average diagnostic delay of 20 years.

What is premenstrual dysphoric disorder (PMDD)?

Premenstrual dysphoric disorder (PMDD) is a more severe variant of premenstrual syndrome (PMS) that impacts 3-9% of women in their reproductive years.

This condition is classified as a “depressive disorder” in the DSM-V, with symptoms arising during the premenstrual or luteal phase of the cycle, easing in the first few days of menstruation.

Symptoms may involve mood swings, feelings of hopelessness, anxiety, irritability, trouble sleeping, heightened interpersonal conflicts, and other depressive signs. The specific cause of PMDD remains unknown, but it might be related to how the body responds to the natural fluctuations of estrogen and progesterone throughout the menstrual cycle, possibly leading to lower serotonin levels in the brain.

Dr. Franziska Haydanek, an OBGYN and online health educator, notes that PMDD is often misdiagnosed as other mood or anxiety disorders, such as major depressive disorder or bipolar disorder, or dismissed as regular PMS.

“This is why it’s crucial to track symptoms and observe their connection to your menstrual cycle. You can look for consistent patterns,” she explains. “If it happens every four weeks, just before your period, it’s more likely to be PMDD than another condition.”

Megan Rogers, 26, who also has PMDD and shares information on TikTok, mentions that getting a diagnosis often requires collaboration from multiple medical specialists due to the nature of PMDD.

“There’s very little ownership of it,” Rogers states. “We have a fragmented healthcare system, and for a condition like PMDD that involves many different aspects, therapy alone won’t resolve it.”

PMDD can be managed through a combination of serotonin reuptake inhibitors (SSRIs) and birth control that prevents ovulation, with some early studies suggesting the effectiveness of holistic treatments.

“The ideal approach is a cohesive effort in finding practitioners who are comfortable working together,” Haydanek advises. “Some OBGYNs might hesitate to prescribe SSRIs, while psychiatrists may be reluctant to prescribe birth control.”

‘For about half my life, I’ve been very in the dark’

For over ten years, Long was unaware that her symptoms were tied to her hormonal cycles. When she switched high schools at 15, she believed her depression was linked to her surroundings. Her school attendance dropped, leading an administrator to intervene, leaving her feeling overwhelmed with shame and confusion.

“I first encountered PMDD in 2009 but at that time, we lacked the terminology for it. It wasn’t mentioned in the DSM, nor was it recognized by the WHO,” she recalls. “Even if others around me sensed something was amiss, I didn’t have the words to express it, and neither did they.”

During her depressive episodes, her serotonin levels dropped, prompting her to indulge in sugary foods, further aggravating her mental health.

“I was trying to comfort myself and numb my feelings, but the sugar only threw my hormones more out of balance, worsening my PMDD,” she reflects.

It wasn’t until her 20s that she began documenting her cycle and moods using an app, which helped her link the luteal phase to her mental health struggles. After conducting in-depth research, she approached a gynecologist and received her PMDD diagnosis earlier this year.

Similarly, Rogers first noticed symptoms at 13, spoke about them with her gynecologist at 18, but wasn’t diagnosed until she was 24. For 11 years, she felt as if she were living a double life.

“Given the symptoms I described, I should have been diagnosed, but I wasn’t. They simply told me, ‘Oh, you have a bad period,'” she recounts.

For Long, receiving her diagnosis has empowered her to create a comprehensive treatment strategy to better cope with her symptoms.

“I finally feel like I have answers,” Long shares. “For roughly half of my life, about 14 years, I’ve felt lost. I’m still working through understanding everything that’s occurred.”

Presently, she has been symptom-free for a month.

Many women are still seeking diagnoses

On the other hand, Rachel Franklin, 28, believes she has PMDD but is having difficulty finding a doctor who will pay attention. Since her teenage years, she’s sensed something was “very wrong,” yet struggled to articulate it. “I felt like I was losing my mind before my period,” she explains.

After mentioning her concerns about PMDD, Franklin’s primary care physician referred her to a psychiatrist. However, the psychiatrist suggested she might have a different condition that Franklin felt did not align with her symptoms.

“Now I’m documenting all my symptoms,” she mentions. “I think I want the diagnosis for clarity. I just want closure in figuring out what’s happening with me.”

She is hopeful that her upcoming appointment next month might offer some clarity.

‘Gaslighting is always there,’ but the main problem is education

For these women, lacking the vocabulary to define or express their condition has been nearly as impairing as their actual symptoms.

“There will always be gaslighting related to women’s pain,” Rogers states. “But a significant aspect is the severe lack of understanding.”

According to Haydanek, medical professionals must complete ongoing education each year. This year, an article focusing on PMDD has been included in the training curriculum.

“OBGYNs are actively working on updating our knowledge,” she remarks. “However, there’s always room for improvement.”

Long concurs that introducing information about PMDD in middle or high school health curricula could have “altered the course” of her life. She hopes that future women will not endure what she has.

“The most challenging part of this disorder is enduring an episode. The second most challenging is recognizing the symptoms to obtain a diagnosis. The third is determining an effective treatment,” Long explains. “The encouraging news is that it is completely manageable, and recovery is possible.”