By the time Emily received her diagnosis, she was facing around-the-clock supervision from her mother as she battled anorexia and engaged in regular self-harm. She had attempted suicide too many times to count. Despite seeing doctors and working with a therapist, her emotions remained overwhelming and relentless. However, everything would change when she got her period. This perplexed her. How could she go from complete distress to feeling okay in just a few days?
In 2016, at the age of 33, Emily was finally diagnosed with premenstrual dysphoric disorder (PMDD), a little-known condition that affects approximately one in 20 women worldwide who menstruate. PMDD symptoms include depression, anxiety, irritability, and a decrease in motivation, focus, and libido. Shockingly, 34% of women with PMDD have attempted suicide, according to the International Association for Premenstrual Disorders (IAPMD).
Emily’s symptoms first appeared when she began menstruating at the age of 13, but it would take until she was 26 to receive a proper diagnosis. Unfortunately, this lengthy wait is not uncommon, as the average time for diagnosis is 12 years, according to the IAPMD. Emily spent three years trying hormone treatments before being offered a hysterectomy as a last resort in 2019.
“I always wanted children,” Emily says. “When I made the decision to have a hysterectomy and came to terms with it, I cried for a week straight. I was grieving the life I had imagined for myself. But on the other hand, it didn’t feel like much of a choice because I didn’t have a life. I took the chance. What did I have to lose?”
PMDD is essentially a “glitch” in the brain, according to Laura Murphy, who works for the IAPMD and has her own experience with PMDD. It is an abnormal negative reaction to fluctuating hormones. Symptoms occur during the luteal stage of the menstrual cycle, which typically starts around day 15 of a 28-day cycle. Emily describes periods of feeling motivated and able to concentrate for five or six days, followed by a descent into fatigue and anxiety. She couldn’t concentrate and felt frustrated with herself. Her self-worth would plummet. It wasn’t until she received her diagnosis that she realized these patterns were related to her menstrual cycle.
Emily spent over a year on a waiting list for her hysterectomy, during which time she stayed in a psychiatric hospital for safety. While her experience was severe, PMDD is a spectrum disorder, with some individuals experiencing manageable impacts and others requiring consistent hospitalization for safety. However, PMDD sufferers are 10 times more likely to attempt suicide compared to the general population. Murphy emphasizes the importance of quicker diagnosis to prevent suicide and improve quality of life.
Around 60-70% of women with PMDD respond positively to SSRI antidepressants, according to the National Institute of Health. Laura Becker, a 26-year-old from Wisconsin, saw significant improvements in her symptoms after starting sertraline, an SSRI, in January. Other treatment options include combined oral contraceptives and hormone treatments that suppress estrogen production and induce chemical menopause. However, these treatments can come with their own side effects, such as hot flushes and mood changes.
Unfortunately, most PMDD patients face many years of misdiagnoses before finding appropriate treatment options. The medical knowledge surrounding PMDD is still patchy, and many healthcare professionals may not be familiar with the condition. This lack of education and awareness often leads to dismissive attitudes towards patients’ concerns. Promoting joint working between specialties is crucial for effective treatment.
Jasmine Gibson, a business owner from Baltimore, was misdiagnosed with bipolar disorder before discovering information about PMDD online. After speaking with a gynecologist, she finally received her proper diagnosis. This demonstrates the lack of education and awareness surrounding PMDD within the medical community.
Dr. Thomas Reilly, a psychiatrist and clinical research training fellow at the University of Oxford, points out that doctors can often be dismissive of patients’ concerns, even when patients themselves recognize the hormonal aspects of their symptoms. Reilly believes that research is often driven by women who have experienced PMDD firsthand.
Maddy, a 25-year-old software engineer from Australia, was diagnosed with PMDD after 14 years of symptoms. Like many others, Maddy was unaware that her symptoms were abnormal. Fortunately, she stumbled upon a psychiatrist who was knowledgeable about PMDD while seeking treatment for her ADHD.
For individuals like Gibson and Maddy, who also have ADHD, managing symptoms during PMDD weeks becomes even more challenging. They question whether they are ever operating at their best, as their mental health conditions intertwine.
It’s crucial to raise awareness about PMDD and destigmatize the discussion surrounding menstruation and mental health. By being open about their disorder, individuals like Gibson have found support and understanding from colleagues and partners.
PMDD is a complex condition that requires greater attention from the medical community. Quicker diagnosis and access to treatment can save lives and significantly improve the quality of life for women who suffer from this often-misunderstood disorder.
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