The Premenstrually Dysphoric Diaries
Words by Francesca Pietkiewicz (she/they)
CW: Depression, Suicidal Ideation
Today I woke up feeling shit.
My alarm went off at 8:30, but staying in bed until 11:30 was the only option. Caught in an adrenaline-anxiety whirlwind, unable to move out of my blanket-fort foetal position. Yesterday was actually quite good, but for the next three or so days I want to vanish from this plane of existence. Today my brain urges me to focus on the negative and then criticises me for making the mentally-forced choice to be a passive observer in my life. This is all too much. SOMETHING NEEDS TO END. It’s me, I need to end.
Hold on, maybe not.
With a drop of blood, it all starts to sunrise back into normality.
One in twenty menstruators worldwide struggles with the (hyper-invisible) Premenstrual Dysphoric Disorder (PMDD).
Think of PMDD like PMS’s estranged sibling. It is a hormonal-based mood disorder that predominantly affects cis women, trans men, and non-binary individuals assigned female at birth (AFAB). Where a majority of AFAB dread their period, I pray to mine like a god. Its arrival is the only caller my sanity will answer to.
PMDD is not just your average pre or mid-period blues. If you have PMDD “you’re spending two weeks of the month feeling like crap, or you've got debilitating period pain, bleeding through a pad every hour and so you can't go to work,” says Beatrice Thorne, General Manager of hormonal health brand Eve Wellness.
Hormones, progesterone, and oestrogen affect each person differently. Symptoms and treatment alike are not a one-size-fits-all scenario. The most common, premenstrual syndrome (PMS), is one of several discomforts and disorders that can inhabit AFAB bodies.
According to the International Association for Premenstrual Disorders (IAPMD), “PMDD is a cyclical, hormone-based mood disorder, affect[ing] an estimated 5.5% of [menstruators]”.
PMDD is an intense negative reaction to hormones released during the menstrual cycle. It’s a severe form of PMS. Where the average person may experience moodiness and irritability during their cycle, a person with PMDD may experience more intense mood changes, anxiety, depression, and in most cases suicidal ideation. Another premenstrual disorder that can affect the body is PME or premenstrual exacerbation which “refers to the premenstrual exacerbation/worsening of the symptoms of another mental disorder, such as major depressive disorder or generalised anxiety disorder” according to IAPMD.
The menstrual cycle is actually split into four phases: follicular, ovulation, luteal, and menstruation. It’s not just the period then that sweet sweet time when there’s no blood to stain someone’s sheets. Wild right? We all react to each quarter differently depending on our hormonal makeup. For the most part, menstruators feel the best and most confident during ovulation. The luteal phase is sometimes coined the ‘calm phase’ of the cycle. But for people with PMDD, it’s the opposite. While many menstruators dread the depths of their periods, PMDD survivors arrive in that hell in the luteal phase.
The body isn’t always kind enough to grant us this perfect structure. We expect irregularity, especially as our bodies age and change into puberty, or out of our cycle into menopause. The best thing we can do is track our habits and symptoms alongside each other.
IAPMD.org is a lifesaver for many PMDD survivors, myself included. Sandi McDonald, PMDD survivor as well as the co-founder and executive director of IAPMD tells me she started IAPMD in 2013 out of a support group. “I started doing a lot of investigating myself and doing a lot of my own research. I was suffering and didn't have any idea of what it was. I encountered a couple of individuals in a PMS Facebook group that sounded like they had a lot of the same things as me… and IAPMD grew from there.”
Most of us in the PMDD community self-diagnose before a doctor diagnoses us. The experience of misdiagnosis is unfortunately a common experience for many PMDD survivors. “It’s very common to get a misdiagnosis, or for AFAB individuals to believe that is ‘just how PMS is’. I had to Google my symptoms and try to find answers. My doctor misdiagnosed me as having generalised anxiety disorder,” says Asha, a PMDD survivor.
A lot of the PMDD survivors I interviewed agreed that PMDD is commonly misdiagnosed as bipolar disorder. Usually it is because doctors can’t understand the rapid mood fluctuation that is caused by our hormones. PMDD survivors may be mis-prescribed medicines that could harm their hormones or bodies further. With my daily dose of fluoxetine, my PMDD phase is only three days, rather than the two or three weeks I became used to. This is a band-aid fix. We need a holistic health system that understands hormonal health.
I was first diagnosed with PMDD in 2020, but this wasn’t the first time I noticed issues within my menstrual cycle. It all started with yearly periods from age 10-12. Then once every three months at 13, until a somewhat normal but deeply painful cycle at 14 ended with a three-month-long excessive bleed. I was put onto a low-dose hormonal contraceptive and almost instantaneously went into a depression. At 16, I started the combination pill for contraception and had my first string of severe panic attacks. At 17, a six-month stint with a mini pill began a two-year depression.
In 2020, at 19, I heard there was a severe form of PMS that makes you suicidal. It was during the first lockdown when it clicked that could be what I had too! Finally having the space to work on my mental health, I thrived in lockdown. I noticed that my severe mental symptoms had become cyclical. I wondered if it was bipolar as it runs in my family. Then I researched multiple forms of bipolar until I typed in severe PMS and found IAPMD. I finally felt like my experience was validated.
The internal reproductive system is deeply confusing to menstruators, and PMDD survivors alike. We know little to nothing about our hormones or our cycle. We take our bodies on a rollercoaster full of irregular bleeding, cramps, birth control, and medications, trying to figure it all out alongside our doctors. “We're all like human experiments,” Sandi says.
As recently as the 20th century, women could be put into intensive psychiatric facilities for having ‘hysteria’. “You know, PMDD was only put in the DSM (Diagnostic and Statistical Manual of Mental Disorders) that same year back in 2013, right around the time that I found out what it was,” says Sandi.
Premenstrual symptoms were first declared separate from ‘hysteric insanity’ in the 1930s, and premenstrual syndrome or “PMS” was first coined in the 1950s.
The reproductive system that spurs this forever mocked cycle is the same one responsible for life on this planet. The energy we have to set aside to live our lives despite it deserves more credit. “I think there's still a pervasive stigma in the medical system that roots from the idea of hysteria. I had to spend time working on the understanding I wasn't being hysterical and it wasn't shameful,” says Billie.
PMDD survivor Ivy expressed deep sadness when she recalled a conversation with her mum that sparked a realisation about menstrual symptoms and the women throughout their family line. “She just all of a sudden had the realisation [PMDD] could have been what she was dealing with. And then, also what her mother was dealing with in the past, back where you'd get sent off for electric shock therapy. My grandmother had electric shock therapy for depression, which could have just been the same thing.”
My hope for the future is that menstruators across the world start to connect with their bodies. The only way to combat the intense lack of knowledge and stigma around our hormones is to share our stories. It’s not right that we live in a world where we don’t learn to understand our bodies until there is a problem with them.
Living with PMDD, or any invisible illness, is deeply debilitating and isolating at times. But I won’t let the PMDD story be a story of pain and suffering. It is a story of strength. It’s pushing through and being your own advocate. It’s getting up out of bed at 3 pm but still doing yoga and taking out the trash. I can prepare for the bad days and congratulate myself for every task I accomplish. I have learned to be loving toward myself even when I can’t love myself, and I think that is the best we can do.