My PMDD Story

When I was 11 years old, I started my period. My life hasn’t really been the same since.

Throughout my teenage years and into my early 20s, I struggled immensely with low mood and irritability for 2 weeks out of every month. For years I thought there was something fundamentally wrong with me. am a caring, empathetic person, but for two weeks out of a month, I didn’t feel any connection to that part of me. It made it hard to know who I really was, because no matter what I did, nothing seemed to change. Ultimately I’d always end up feeling that intense low again. For two weeks out of every month, I was in so much emotional pain that on many occasions I thought about harming myself just to make the feelings stop.

When I was in my teens, my cyclic moods were attributed to me being a stroppy teenage girl with raging hormones. I always assumed it would get better as I got older. As I did get older however, my cyclic mood swings and irritability persisted. This began to impact my work as well as my romantic relationships and often left partners struggling to cope with my sudden, and apparently unprovoked changes in mood. My coping mechanism during this time had always been to isolate myself, which led to my first diagnosis of agoraphobia and social anxiety. In my early 20’s, I sought further help and was referred to mental health services. Based on the fact I experienced mood swings and had experienced historic trauma, I promptly received a psychiatric diagnosis of EUPD. I accepted this diagnosis for a number of years, despite the fact that 2 out of 4 weeks of the month, I felt stable emotionally and did not experience any mental health symptoms outside my general anxiety. Looking back, I feel incredibly frustrated as I distinctly remember telling every healthcare professional that my mood swings were NOT a persistent challenge and were cyclic in nature. The diagnosis of EUPD created a road block for many years; any help I attempted to access meant a referral to psychiatric services, and based entirely around my EUPD diagnosis, which proved unhelpful.

I have always been interested in hormones, and studied biological sciences as an undergraduate. In my mid twenties, I pursued my dream of becoming a mental health nurse. This began to form my interest in women's health; particularly how hormones, and sensitivity to hormones, can impact on women’s mental health. It was around this time that I learnt about PMDD. To test my theory that my cyclic mood swings may correlate with my menstrual cycle, I began to chart both my moods and my periods. I have continued to do this for the past 4 years. Interestingly, I became pregnant during this period, and during my pregnancy, my cyclic moods were entirely absent. To me at least, this provided unequivocal evidence that my mood swings were affected by the luteal phase of my menstrual cycle. I began to read more and more about PMDD, and had my lightbulb moment at 28. For years, I hadn’t even acknowledge that any of this could be related to my menstrual cycle. Looking back, it seems so obvious. I took this information first to a male GP who I had to explain the disorder to. I then took it to a female GP, expressing that I felt I was actually struggling with PMDD. She was the first person to acknowledge that I know my own body, and agreed based on my symptoms and documented mood logs, that I have PMDD.

I continue to log my moods, as it allows me to predict when my luteal phase will be. This has been my biggest saving grace, as due to the severity of my own PMDD, I have unfortunately had to learn to adapt my life around it. I am unable to take combined contraceptives, but I am aware that a number of studies note the value of these in PMDD treatment. As a healthcare professional myself, I have huge concerns that women are being referred to services that are not suitable. Healthcare professionals need to be better educated on women's health issues, including PMDD.

About the Author: My name is Jo, I am a mental health nurse based in the North West of England. I am passionate about using my position as a nurse to inform others about women’s health issues, including PMDD. I am also an advocate for autistic and neurodivergent women.

Surviving PMDD

If you’re reading this you probably already know what PMDD stands for and I’m just 1 of 1 in 20 women and AFAB individuals that live with a Premenstrual Disorder. As a child I was diagnosed with Premature Adrenarche, an overproduction of androgens (sex hormones)

I first started my period aged 10 but I hit crisis with mood symptoms around

age 13. There is no credible evidence suggesting PMD’s and Premature Adrenarche are linked, but a sensitivity to hormonal fluctuations has been present my entire life. 

The symptoms of PMDD for me then, were similar to as they are now, today,

extreme mood fluctuations including: rage, tearfulness, suicidal ideation, panic

attacks, fatigue, migraine, insomnia, intrusive thoughts, and more.

The trouble with being a thirteen year old girl living with these symptoms in the early noughties was, everyone thought I was just ‘acting out’ or an ‘angry teenager.’ There was some acting out, there was also a suicide attempt (one of a few.) Looking back now I can see how prevalent a role PMDD played in my not wanting to be here, though at the time I was prescribed antidepressants and birth control and sent on my way.

It wasn’t until around ten years later that I approached my doctor again, armed with cycles worth of symptoms and research relating to PMDD. There was little information on PMDD back then and I remember my GP looking blankly at me, as if I’d plucked a random and seemingly fictitious diagnosis from thin air. She said my symptoms were the result of PMS and I’m sad to report, though appropriate diagnosis is improving, depending on who I see, it still gets referred to as such.

I’m now 34 and a mum of two. I have been tracking my menstrual cycle for over 15 years. I’ve tried every contraceptive available, bar sterilisation and many, many, SSRI’s both month round, and only during the luteal phase. PMDD, unfortunately worsened after each pregnancy and most dramatically since the birth of my second child. I’m eighteen months postpartum now and have been struggling to find yet another treatment capable of holding me firm.

I also have a fibromyalgia diagnosis, and in recent years particularly, symptoms of the condition have been much less manageable during the luteal phase. Allergic reactions, chronic pain and flu likeness increase around ovulation, which is also when intrusive thoughts and panic attacks start to cripple me.

I’m sensitive to what feels like everything, for two weeks a month, sometimes longer, and it’s no fun. 

I know that sounds like a lot, and none of it very reassuring if you’re here reading this for tips on PMDD management, but it’s also important to note, whilst I am not that much further in my quest to being PMDD free, I definitely have learnt a few tips and tricks to help me manage during the luteal phase. 

Over the last twenty years I’ve tried many SSRI’s. I’ve seen therapists and counsellors on and off too, but I always seemed embark on treatment after a traumatic life event, as opposed to particularly for PMDD. The trouble, if I think about it, is that PMDD has been the cause of many of these traumatic life events. And hell would break loose if I drank alcohol during the luteal phase. I’ve been arrested, I’ve fallen out with friends, family members, employers, and I’ve taken unnecessary risks and found myself in situations I wouldn’t wish on my enemies. Instead of relating these life lapses to PMDD though, I always just thought I was a bit of a fuck up. Unable to bear rejection, constantly seeking validation but never actually getting it, have all been patterns of behaviour for me. It’s true I’ve always tracked my symptoms, but I did it as a way to predict my next cycle as opposed to a tool that could help me heal. Until recently, I’ve always been a person who gave the bare minimum in therapy while expecting maximum results. Then as soon as I would start to feel better again (usually during follicular) I would shut down and quit. 

Sadly, it took me a full on psychiatric breakdown after my son was born and a whole year of therapy to realise it’s not just my personality. PMDD is not who I am. It’s something I endure. 

During that year I completed a 3 month course of Dialectical Behaviour Therapy (DBT) of which I am now a huge advocate. DBT is great for PMDD because it focuses on distress tolerance and offers skills that are perfect for use when in crisis. I’ve also recently been seen by a gynaecologist who is familiar with treating those with PMDD. As a result of this I now use HRT in combination with SSRI’s as a treatment. I’ve been doing so for seven months and for the last two cycles have seen positive results. The reality is PMDD is a complex disorder. It takes prisoners. It destroys self esteem, and hinders so much of our lives. No two people with the condition will experience the exact same symptoms. Your sanity may be questioned both by yourself and the people you love. But there is hope, a combination of treatment and the right support network is keys. Along with raising awareness of and providing insight to premenstrual disorders, because PMDD awareness is suicide prevention.

Written by Steph Cullen

Steph Cullen is a writer, fundraising co-ordinator for IAPMD and PMDD survivor. Steph has bravely shared her experience of PMDD with us, she is dedicated to raising awareness about PMDD.