“I lived with PMDD for 12 years. Have you heard of it? So many haven’t, yet it carries a 30% suicide risk rate and takes an average of 12 years to receive a correct diagnosis. It is often referred to as “PMS on steroids”, but for those who live with it, it’s so much more than that.
So what is PMDD? Premenstrual Dysphoric Disorder affects around 1 in 20 women and AFAB individuals. It is a suspected genetic, hormone-based mood disorder, characterised by an extreme sensitivity to normal hormonal fluctuations in the luteal (premenstrual) phase of the menstrual cycle. The core symptoms are mood-based and typically occur a week or two before menstruation and go away within a few days after bleeding begins. The only way to identify PMDD is by tracking your symptoms against your menstrual cycle. Check out the International Association for Premenstrual Disorders (iapmd.org) for full details of the symptoms and diagnostic criteria.
I suffered with anxiety and depression since I was a teenager, never understanding why I would feel the way I did so often. It wasn’t until my early 20s, following a negative reaction to the contraceptive pill, that I knew something was seriously wrong. My mental health deteriorated VERY rapidly and I never fully recovered from this ‘crash’. I started experiencing regular suicidal ideation, depression, anxiety, and lethargy which was so severe that I struggled to get out of bed – it was like someone had flicked a switch in my brain and I could no longer function or think clearly. I would cry for hours on end, be triggered by the smallest of things, and feel like I was totally losing my mind. However, my psychiatrist and myself were puzzled as for half the time I would feel myself and be enjoying life, whilst other times I would fall into a dark pit of despair, with no idea why. I would show signs of improvement and then I would deteriorate again and this would repeat over and over and over. We could not get on top of the lows… and it was terrifying.
It wasn’t until after the birth of my daughter at 29 that I was eventually diagnosed with PMDD by a specialist, after spiraling out of control once my periods returned postpartum. I found out that my symptoms had been occurring in the luteal phase of my menstrual cycle EVERY MONTH for years and years – how had I not realised this(!?).
It seemed so obvious once I noticed the pattern but no one had ever suggested that I track my symptoms alongside my menstrual cycle, or that mental health and the menstrual cycle being related were even a ‘thing’. I never noticed there was a link… not once. After exhausting all treatment options a few years down the line, I opted for a full hysterectomy and bilateral oophorectomy (both ovaries removed) as a very last resort treatment (please don’t let this scare you – many treatments work for a lot of people).
Adjusting to surgical menopause and HRT was rocky at first, but I am so much improved and I have a good quality of life and a bright future to look forward to.
Since my diagnosis, I have become very passionate about raising awareness of PMDD, so others don’t have to suffer alone as I did. This led me to become part of Vicious Cycle, a patient-led PMDD awareness campaign. If you’re noticing regular monthly changes in yourself or a loved one – depression, anxiety, tears, panic and maybe even rage, I urge you to research into PMDD.”
Visit iapmd.org to learn more, you can follow Lou on her instagram.
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