There used to be a running joke in my family. Are you due on? my mum would ask, a smile resting on her face. Shed say it after witnessing one of my many meltdowns. But I wasnt just snappy or bursting into tears at silly things, as so many of us do when our period is about to arrive. Instead, for over a decade, I was completely out of control of my own life and no one knew why. How could they when I didnt even know myself?
I had a loving family, good friends, a fulfilling career. I should have been happy. But I wasnt. The answer, it turns out, lay in Mums joke. My depression, anxiety, anorexia they were all down to one thing: my menstrual cycle. So why did it take 14 years and countless overdoses for that to be diagnosed?
It all started when I was 12. Up until that year, Id been a happy child, growing up in Derbyshire with my mum, dad and younger brother. But I started waking up with a dark cloud over my head. Intrusive thoughts would flood my brain, hardening into an ongoing sense of panic and foreboding. Then there were the physical symptoms: headaches, insomnia and a lethargy that made my bones feel like they were made of concrete. There was just one respite: for five days of the month, I felt fine, like my old self again. Laughing with my friends and family, Id think, Im back. But that didnt last for long.
My teenage years passed in a blur. I was a voyeur, looking into the fishbowl of my life and watching from the outside as everyone had fun without me. I felt cocooned by a feeling of worthlessness. Failure terrified me my A-levels filled me with such extreme anxiety I would have panic attacks just thinking about them. Sitting in lessons, the words I cant do this swirled in front of me until I had to run out of class, hyperventilating. Id spend all my free time studying, to catch up on what Id missed, instead of hanging out with friends or dating. I was lonely. Anxious. I hated my life.
"It was like Id lost every ounce of control. I didnt want to die I just wanted a break from the anxiety and worthlessness that plagued me."
I visited doctor after doctor and was diagnosed with chronic fatigue syndrome, then anxiety, then depression, then anorexia. I was anorexic. I would exercise like crazy every lunchtime and after school, running until I burned myself out. But, looking back, it was clear I was searching for control anywhere I could get it.
When I got a place at the University of Southampton to study physiotherapy, I saw it as a way to escape. I thought perhaps if I moved away from home, my problems would go away too. But despite making friends and forcing myself to go along to parties, I sank even deeper into the darkness. One day I found myself sitting on a park bench, taking an overdose. It was like Id lost every ounce of control. I didnt want to die I just wanted a break from the anxiety and worthlessness that plagued me. When I woke up, I was in hospital. I had no idea how I got there. My thoughts went straight to my family. How could I do that to them?
But my remorse didnt last for long. Soon overdosing became a regular part of my life never to end it, but because I needed the unexplained chaos within my mind and body to stop. There were even times I wished someone would put me into a coma, so that I was still alive but didnt have to think or feel. I craved numbness.
Eventually I was allocated a crisis team and put under observation. This heightened awareness around me only made me even more secretive about what I was doing. My friends became used to watching my decline, but I hid the worst from them, overdosing in private. There were times Id wake up alone in a panic and call the crisis team whod sometimes send an ambulance to bring me in for treatment. My friends begged me to stop. I wouldnt listen. I was convinced I wasnt worth their worry.
One day my mum came to surprise me at my flat. She found me mid-overdose, curled up like a little mouse in the corner of my room. I dont remember much about that day only that my mum was absolutely heartbroken. But the guilt I felt didnt stop me. Throughout my final year, I was admitted to hospital for overdosing a further three times, all without my parents knowledge.
Despite all of this, I was determined to pass my university course. Driven by a fear of failure, I rewrote my final essay five times, staying up for nights on end without sleeping. I graduated in 2012, landing a full-time job that was a 30-minute drive away from my family, and moving into a house-share with a stranger. I loved my work so much that I refused to miss even one day of it but outside of that, I was crumbling. Three years into the role, my anorexia was so bad that I was malnourished and I couldnt do my job properly, so my managers and I agreed I would take leave indefinitely. After that, my mum became my full-time carer, cooking me meals that Id tentatively push around my plate, rationing out my medication to make sure I didnt take too much, and going out with me for walks. It felt like my life was on pause.
Around this time, my doctor began to notice something. Id been seeing her for the past year and she was unlike any other medical professional Id met. However bad things became, she always believed I had the strength to get past them. Through my regular visits, she began to pick up on some patterns: how I always seemed to be at my worst the day before my period was due. She thought I could have something called premenstrual dysphoric disorder, or PMDD. I had never heard of it. Put simply, PMDD is like PMS Extra, and affects around 5.5% of women, driving around 30% of sufferers to attempt suicide. Starting, on average, at around the time of ovulation and usually ending when a period arrives around two weeks later, the symptoms can include extreme anxiety, psychosis, depression and, at worst, wanting to harm yourself and others. Unlike PMS, PMDD can be so debilitating that work, social life and relationships may become impossible to manage for more than a few days a month. The cause is not yet clear, but its thought that people with PMDD are more sensitive to the hormonal changes that come with your cycle.
At first I thought the idea was silly: surely there was no way that a period could have this much impact? But over the years, Id been tracking my menstrual cycle on a calendar and writing about my mental health on a blog. When I looked at the two side by side, I was floored: every time my period was due, my mental health plummeted. Everything matched up. In 2016, aged 26, I was officially diagnosed with PMDD.
It was thought that the hormone progesterone was sending me haywire, so I was put on a three-month trial of oestrogen-only hormone therapy, which suppresses the menstrual cycle.
Different treatments work for different people, but hormone therapy worked for me. The doctors then put me on a temporary chemical-induced menopause. It simulated what life would be like if I was to have a hysterectomy and my body stopped naturally producing progesterone. It was the best three months of my life. I didnt have a single down day. In disbelief, I made a bucket list, determined to reclaim my life. They were minor things to most people, like going to Planet Hollywood and the hot-air Balloon Fiesta in Bristol, and visiting the Leaning Tower Of Pisa. My best friend and I booked a four-day trip to Italy. Despite planning to come home if my mental health should plummet, there wasnt a single difficult moment. Gazing up at the Leaning Tower Of Pisa on my first holiday in five years, I breathed in the warm Italian air. Then and there, I decided that I couldnt go back to life as it was before.
One afternoon, two years after my diagnosis, my doctors broke something to me. The chemical menopause that had brought me so much bliss wasnt a long-term solution because denying your body progesterone completely for an extended period of time can cause dangerous abnormal cell growth. Doctors told me I should consider having a full hysterectomy, removing my uterus, ovaries and fallopian tubes. While less invasive methods work for many other people with PMDD, sadly I was at the end of the treatment plan and this was the only option I had left.
All the way home, I juggled the two options in my mind: did I really want a future where I couldnt have my own child? Id wanted to have a family ever since I was little. How would my mum feel? Shed always wanted grandkids. But that night, chatting things through with her, I realised that the PMDD would eventually mean she would lose me. It had caused me to self-destruct. I couldnt keep putting my family and friends through overdoses. How could I have a child when I couldnt even care for myself?
My hysterectomy was booked for 7th May 2019. It was a gorgeous late spring day and I woke early, feeling galvanised and strong. This was going to be the first day of the rest of my life. But still, a seed of doubt niggled: was I doing the right thing? What if it didnt work? Mum and Dad came with me, and I had packed my overnight bag with a fluffy uterus draped in a superman cape that my mates had given me for good luck. I wore a T-shirt emblazoned with See you later, ovulator, and on the way to the hospital, Christina Aguileras Fighter blared from the car stereo.
The procedure lasted two and a half hours. I was given an epidural and a general anaesthetic, and had keyhole surgery. When I woke up, I was woozy and couldnt feel my legs, but I couldnt believe it had actually happened. Mum and Dad were there to greet me. I stayed in hospital for two nights and made such a good recovery, physically and mentally, that on the day that I was discharged, I joined my friends at the pub.
Since the hysterectomy, I am living the life I always wanted, but never felt was possible. Every single one of my PMDD symptoms has vanished. I can now picture the future owning a house and having children; things, until now, Ive never been stable enough to seriously imagine. I have frozen my eggs and I would like to try surrogacy, but expenses and fertility-clinic costs total around 30,000, so Im not sure thats an option. My dream is to foster or adopt one day whether Im in a relationship or not. I havent even thought about dating.
Of course, the hysterectomy cant erase the pain Ive been through. It cant give me back the lost years I spent detached from friends or unable to nurture a stable relationship, the many nights I lay sobbing under my duvet or the hurt I caused myself and those I love. Now, though, the eating disorder that plagued my life for years has disappeared, and I havent self-harmed since my surgery. The operation set me free. Ill have hormone-replacement therapy for life, but its a small price to pay for having my world back. Many women who suffer from PMDD take their own lives. I could have been one of them.
I threw a hysterectomy party to celebrate the procedure. As my friends and I played pin the egg on the uterus and had strawberry Baileys shots out of syringes, I caught sight of myself laughing. It felt like the first time Id done it in years.
Know the symptoms
They could be emotional, like mood swings, feeling overwhelmed and suicidal thoughts, or physical ones, such as breast tenderness, sleep problems and headaches. Typically you will only experience symptoms for a week or two before a period, but its different for everyone. Find a full list of symptoms at Mind.org.uk.
Keep a diary
Your doctor may ask you to keep a detailed record of symptoms for several months. If you feel they arent taking you seriously, do this yourself you can download mood charts from the internet to help you.
Consider finding an advocate
They can come to appointments to help make sure people listen to you. It can be a friend or family member, or a professional advocate find more details at Mind.org.uk.
If youre experiencing suicidal feelings and are worried you may act on them, call 999, go straight to A&E or call Samaritans for free on 116 123 to talk.
For further help, Emily found support at Pms.org.uk
If you need support with your mental health, reach out to Mind for help and information.
This feature appeared in the July 2020 issue of Cosmopolitan, out now.
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Coping with PMDD, the crippling period condition - cosmopolitan.com
