Premenstrual dysphoric disorder is often misdiagnosed as bad PMS, but for sufferers like myself, it’s life-limiting

I’ve had premenstrual dysphoric disorder for about as long as I’ve had a period, though it wasn’t until I was in my 20s that I learned it even had a name. I believed that what I went through most months was what all menstruating people went through- the dense, unnerving foggy feeling in my head, the constant fatigue, the physical pain, the sharp dip in mood before menstruation, the intermittent suicidal ideation, the insomnia. I thought I was just over-sensitive, an anxious person who simply needed to try harder.

PMDD is perhaps most easily understood as severe PMS, though I sometimes find it frustrating when it’s described as such. PMDD can be disabling, sometimes making it near impossible for me to stand up for long or even get out of bed at all. I can usually feel when a bout of PMDD is on the way, though I deny it’s happening right up until the moment I can’t, right up until the covers are drawn over my head and the walls feel especially close and I am so, so sure I won’t ever feel better. In the days before the worst hits I struggle to think clearly, names and words deserting me until I just don’t want to talk at all. My steps are heavier, my body harder to manoeuvre, as though gravity itself has been turned up a notch.

My steps are heavier, my body harder to manoeuvre, as though gravity itself has been turned up a notch.

When I went to see a doctor about it at University, I was told it was ‘just’ depression and anxiety, that I should try to exercise and work on improving my sleep patterns. For years after I blamed myself for not trying harder, dreading that moment each month when I’d notice myself start to slow and sag and struggle in everyday life. And then one afternoon I read a Twitter thread about another woman’s struggle with PMDD, and years of monthly mental agony began to make sense. I sought help, and after being shrugged off by several male GPs I finally met with a doctor who understood. She described it in terms I could make sense of, telling me that I had an increased sensitivity to the reproductive hormones that my body was producing in the lead up to the start of my period. She said that no, I wasn’t just weak-willed or not trying hard enough, that this was a debilitating condition that many, many other people suffered with.

Not long after I had a coil fitted to try and help me to manage the physical and emotional overwhelm of my PMDD. The coil is a small t-shaped device inserted into the uterus that works to prevent pregnancy by releasing progestin, thickening the mucus in the cervix and partially suppressing ovulation. I knew it was a risk, as although some people I’d spoken to said it was a huge help, others had told me that it had made their symptoms significantly worse. Admittedly, the adjustment was terrible, but after a few months I slowly started to feel better. My periods stopped altogether and though I continued to experience some cramping as well as a spike in anxiety and depression once every few weeks, it was nowhere near as severe as it had been.