We all have our ways of managing the monthly cramps, fatigue and irritability of PMS (premenstrual syndrome), but for one in 20 women, the emotional complexity of our menstrual cycle compounded by premenstrual dysphoric disorder (PMDD) can be exhausting and debilitating with the potential to destroy lives. Despite affecting so many people, there remains a silence and misunderstanding around the condition with diagnosis providing difficult and treatments delayed as a result.
For Gráinne Owens, PMDD made it virtually impossible for her to live a normal life. She felt that something was wrong and was frightened by the strength and unknowable nature of what was happening to her.
I experienced anger, anxiety, depression, insomnia, mental confusion and fatigue
“PMDD affected so many aspects of my emotional and physical life that tying them all together into a cohesive set of symptoms and establishing a timeline for them was quite difficult,” she says. “It took a tremendous effort to step back from the chaos of a PMDD episode, or ‘hell week’ as sufferers call it, and identify what my actual feelings were beyond a general sense of disaster. As part of PMDD I experienced anger, anxiety, depression, insomnia, mental confusion and fatigue.”
Prior to learning that she had PMDD, Gráinne, like many, had never heard of the disorder. And despite going to counsellors, doctors and therapists with an increasing sense of urgency it was never suggested as a diagnosis. “I ignored my own symptoms for a long time,” she says, “because I was terrified of them. The level of personal gaslighting that goes along with PMDD is immense. I also felt like there were very few people willing to treat me. For me PMDD was too risky and finding a solution was urgent, but no one shared my feeling of urgency.”
A core symptom of PMDD is rage which Gráinne, a mother of two, heavily experienced. “As a mother of young children, I was supposed to be gentle and loving and patient,” she says, “however I could find myself suddenly consumed by an overwhelming anger. It could be sparked by the smallest thing and made no sense to the part of my brain that was still me and not dominated by my hormones. It really scared me. Keeping it in was so exhausting.”
Anxiety and self-doubt are also dominant symptoms of PMDD. Gráinne remarks that the anxiety can be so overwhelming that it feels “like the world has slipped sideways”. The symptoms of PMDD can be frightening due to their volatile and extreme nature. When the condition is not widely recognized, understood or accepted it remains a silenced and stigmatized disorder. Many women experience these strong emotions and behaviors in isolation.
“The symptoms of PMDD made me feel so much shame and embarrassment,” says Gráinne. “Keeping my secret illness was one of the hardest aspects of undiagnosed PMDD. When it was at its worst, it felt like every day was a struggle and for reasons that were inexplicable, I didn’t want to continue living. I wasn’t actively suicidal, but I used to think that if there was a way for me to stop existing all together, a way for me to never have existed in the first place, then that would be quite nice.”
Emily Holloway and Ally McHugh, psychotherapists and co-founders of the PMDD Collective are raising awareness and providing support for those who experience PMDD. “PMDD affects at least one in 20 women and AFAB [assigned female at birth] individuals,” Holloway says. “This means that someone you know has it, though they may not realize it. It is a life-impacting cyclical mood disorder; it is not severe PMS or a hormone imbalance. The symptoms of PMDD can leave people feeling completely overwhelmed and out of control. It can feel like being a completely different person half the month.”
With symptoms ranging from migraines and food cravings to uncontrollable rage and urges to self-harm, the collective wants those who are living with the disorder to know there is support, treatment and help available.
McHugh says that 70 per cent of people with PMDD experience suicidal thoughts each month and that “research suggests that 30 per cent will attempt suicide in their lifetime”.
“While these statistics are difficult to read, we believe it’s equally important to know that there is help available. There are a growing number of support services out there, offering a wide range of PMDD focused interventions including therapy, mindfulness, peer support and social media chat rooms.”
There remains a concerning lack of awareness surrounding PMDD which is highlighted by the fact that it can take 12 years to get a diagnosis. “It is only in the last decade that PMDD has been recognized as a disorder. The process of diagnosis can often lead to misdiagnosing women and medicating them inappropriately,” says Holloway. “Doctors often use a process of elimination: first checking for hormone imbalances, then depression, anxiety and personality disorders.”
Gráinne advocates for greater awareness and education surrounding PMDD and wonders why there is not greater medical curiosity surrounding the prevalent condition.
“There were 60 girls in my class at school,” she says. “Statistically 12 of us could have PMDD and three or four of us could attempt suicide as a result. Why does not one value the lives of women enough to talk about it? Where are the doctors who want to find a treatment plan that’s more than an antidepressant or a contraceptive? PMS is treated like a joke, a silly quirk of being female that we need to get over before we inconvenience anyone but it’s not a joke and PMDD isn’t something to trivialize. We need better education and open conversations between curious doctors and the women they treat.”
Doctors look for mood swings, rage, anxiety and depression
When seeking a diagnosis McHugh advises that an informed GP may be confident to do it, but often patients are referred to specialist gynecologists who will want evidence of a few cycles’ symptoms. “Doctors look for mood swings, rage, anxiety and depression,” she says.
“To get a diagnosis at least one of these symptoms must be present during the luteal phase [second half of the cycle], as well as four other symptoms, including brain fog, fatigue, appetite changes, sleep disturbances, feeling overwhelmed and physical symptoms such as migraines or sore breasts. After tracking for a few months, the next step is going to your GP. They may want to explore first line treatments, such as the contraceptive pill or SSRI antidepressants. At this point we would recommend requesting a referral to a specialist gynaecologist with an awareness of PMDD to explore further treatment options.”
For Gráinne, like many women, she resorted to self-diagnosis after googling her symptoms, tracking her cycle and symptoms, and bringing as much information as possible to her GP. “I’m not sure if I would ever have received a diagnosis if I had not discovered PMDD and connected the dots myself,” she says.
“Finding out I had PMDD was one of the best days of my life. On that day, I knew I wasn’t mad or bad. I was unwell. Suddenly the disorientating symptoms fell into categories and their sudden shocking onset became a pattern. I felt like I was saved because if I was sick, I could get better.”
For more information and support, please visit your GP. Additional information can be found at iapmd.org.
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