I was 30 years old the first time I heard about PMDD, or Premenstrual Dysphoric Disorder.
I gave birth to my third child 10 months prior, and during my c-section, I had a tubal ligation done. No more birth control, great! Right? Wrong. During my youngest son’s first year, I spiraled out of control. The emotional highs and lows that I experienced constantly during my teen years were back with a vengeance. When my son was 9 months old, I became consumed by suicidal ideation again. Another familiar foe from my teen years. I needed help. As I sat in my psychiatrist’s office, revealing my confusion about what was going on with me, she stated that she believed I have PMDD.
Premenstrual Dysphoric Disorder, shortened to PMDD, is an often unrecognized, and misdiagnosed endocrine disorder. It is NOT just “bad PMS.”
PMDD is a severe, disorienting, devastating, and potentially deadly condition. Unfortunately, when young women present with mood symptoms, mental illness is frequently the presumed cause. Or, if it is tied to her menstrual cycle, her mood swings can either be dismissed entirely and/or mocked by those close to her “oh it’s her time of the month, watch out. Haha.”
Women’s health needs to be taken seriously. Our bodies are miraculous, and what the body can achieve is incredible. But when it doesn’t work quite right, the devastation and havoc it can wreak is also incredible.
In the weeks and months following my diagnosis, I began to look back on my life, specifically my teen years, through the lens of PMDD. For the first time, I felt like a diagnosis actually fit my experience. It explained why no standard psychiatric medicine helped me. It explained why I was a mostly “normal” kid until age 12. It explained the sheer intensity of every emotion I felt, and why my emotions always seemed extreme to other people.
My diagnosis was as validating as it was heartbreaking.
To understand PMDD, it helps to understand the first D: dysphoria.
The definition of dysphoria is: very unhappy, uneasy or dissatisfied. Symptoms of a dysphoric mood state are: Irritability, powerful emotions such as guilt, anger, or melancholia, feelings of failure, a deep sense of discontent or dissatisfaction, feeling overwhelmed, aggression and hostility, lack of pleasure in daily activities, stress, changes in eating and sleeping patterns, struggling to manage or recover from low and profound emotions.
Read that list again. Consider how deeply disconcerting this would be to a young girl trying to find her way in the world.
In addition to the dysphoric mood state, PMDD can cause suicidal ideation, panic attacks, severe interpersonal conflict, and an overarching feeling of being out of control. Symptoms of PMDD can last for up to two weeks during the luteal phase of the menstrual cycle (when your ovaries release an egg) and subside within the first few days of the period. This chronic cycle can lead to continued depression and anxiety outside of the luteal phase.
I suffered greatly due to my delayed PMDD diagnosis and from being treated for various mental illnesses I didn’t have. From the age of 12 to 20, I was (mis)diagnosed with numerous mental illnesses. I was put on dozens of medications and experienced significant side effects and adverse reactions. I spent years in inpatient psychiatric treatment facilities (not consecutively). I experienced significant and repeated incidents of medical abuse.
At one point, an attempt was made to institutionalize me.
All of this clouded the picture of what was truly going on and led to further deterioration of my overall condition. By age 17, I attempted suicide. Over the three years that followed, I attempted suicide four more times. That landed me in the ICU with broken bones, damaged organs, and more. I spent months in physical rehabilitation and my mental health continued to deteriorate.
Ultimately, at age 20, I got pregnant. After my son was born, I went on birth control for the first time in my life. Coincidentally, birth control is part of the treatment for PMDD. This led to the most stable years I had ever experienced. Things were still hard. I left an abusive relationship and was trying to raise my son on my own, but I could manage it. No matter how hard things were, I didn’t feel out of control, and I no longer struggled with constant suicidal ideation. During those years, my doctors, family, and I all thought that the drive to provide my son a safe, loving, and stable home life (and mom) was the explanation for my change. (And it was, in part. But that was not the only explanation.)
In my mid-twenties, I married my husband and had two more children. I was only off birth control for brief periods of trying to conceive and during pregnancy. Pregnancy is also typically a “calm” time for PMDD due to the absence of the menstrual cycle and associated hormonal fluctuations. Overall, my mental health was generally ok.
What does my story mean for anyone reading this? Awareness. I want people to know about PMDD.
Theodore Woodward told his medical interns “When you hear hoofbeats behind you, don’t expect to see a zebra”. (Meaning, it is likely the much more common cause, a horse). When doctors heard my symptoms, they expected mental illness. Not PMDD. Even now, with a diagnosis, many providers I see either don’t know about PMDD at all, or they dismiss it as “bad PMS”, ignoring my suffering. Treatment for PMDD is not always straightforward, but I have been fortunate to find success with birth control and an SSRI (antidepressant).
PMDD is rare; an estimated 5% of menstruating women suffer from this condition. Delayed diagnosis compounds the suffering.
If your daughter, granddaughter, or any young girl you love is struggling with any of the symptoms I’ve mentioned, ask about PMDD. It is better to say something and risk being incorrect, than to stay quiet and risk more suffering. Help your daughters learn what possible PMS symptoms are, and what is outside the norm and warrants help. If a woman you know discloses they have PMDD, do not minimize or dismiss it as “bad PMS”.
Women and girls deserve proper healthcare and to be believed. I’m grateful I finally got the correct diagnosis, hopefully sharing my PMDD story helps someone get diagnosed and treated sooner.
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