For years, I had no idea what was happening to me. I just knew that for weeks at a time, I felt like a completely different person. My mood would crash, anxiety would hijack my mind, and I’d be utterly overwhelmed by things that usually felt manageable. I made life-altering decisions I’d later deeply regret - breaking up with partners or quitting jobs - and my thoughts could spiral into dark, terrifying places. Then, just as suddenly as the storm arrived, it would lift. Like an unwelcome visitor taking over my brain, it would pack up and leave… only to repeat the vicious cycle month after month.
I spent years desperately searching for answers, but my experience with healthcare professionals was a whirlwind of frustration. I saw GP after GP, only to be met with brick walls and dismissive brush-offs. Most told me it was “just PMS.” One even told me I was being “a little bit dramatic.” At one point, I was nearly misdiagnosed with bipolar disorder.
I knew it was more than PMS. And I knew it wasn’t bipolar, because these shifts followed a relentless cyclical pattern. My lightbulb moment finally came after countless late nights spent relentlessly Googling symptoms, when I stumbled across a blog post about PMDD. In an instant, years of confusion crystallised into clarity.
What is PMDD, and how is it different from PMS?
PMDD, or Premenstrual Dysphoric Disorder, is a severe, cyclical neuroendocrine condition triggered by a brain sensitivity to normal hormonal fluctuations across the menstrual cycle. It isn’t just “bad PMS,” nor is it caused by abnormal hormone levels; it’s an extraordinary reaction to ordinary biological changes.
In the days or weeks leading up to a period, PMDD can unleash severe mood swings, crippling anxiety, explosive irritability, profound brain fog, and total functional burnout. For many, the psychological weight becomes unbearable - 1 in 3 people with PMDD will attempt suicide in their lifetime. This isn’t just discomfort; it is a life-threatening crisis.
Learning that my struggles stemmed from a genuine medical condition - not a character flaw, weakness, or an inability to cope - was monumental. After years of doctors minimising my pain and friends branding me as “moody,” I had internalised the belief that I was inherently broken. Putting a name to my experience didn’t just give me answers; it gave me back my dignity.
Why a PMDD diagnosis was only half the battle
Yet, securing a diagnosis was only half the battle. When I dove into researching PMDD, I was met with medical jargon that felt cold, clinical, and totally overwhelming. Without a medical background, reading scientific papers felt like deciphering a foreign language. When you’re already drowning in symptoms, you don’t need impenetrable textbooks, you need someone to talk to you like a human being.
I kept asking myself: What is actually happening to me? Why do I feel like this? Am I alone? What can I do? How on earth do I explain this to the people I love? When I couldn’t find a supportive, accessible space to answer those questions, I decided to build one. The PMDD Project began as an online refuge; a place to make sense of PMDD without fear, condescension, or jargon. I wanted to share accessible information and help partners, friends, families, and employers understand what we were going through, giving people something tangible to share and say: “This. This is what I’m living with.”
Building the UK’s first PMDD charity
As our community grew, it became painfully clear that my story wasn’t an exception, it was the norm. The UK landscape was fundamentally failing people with PMDD. Patients faced years-long delays for diagnosis, medical schools weren’t teaching PMDD on their core curricula, workplace support was virtually non-existent, and critical research was drastically underfunded. An Instagram support page simply wasn’t enough to tackle a systemic crisis. So, we evolved into the UK’s first registered PMDD charity to fight for systemic change.
How The PMDD Project supports people with PMDD
Today, The PMDD Project drives real, tangible impact across every level of society:
- In healthcare: We deliver specialised training to healthcare professionals so GPs and clinicians can recognise, diagnose, and support PMDD effectively, ensuring fewer patients face medical dismissal.
- In community & support: We run peer-led support groups right across the UK and create free, jargon-free educational resources written in clear, human language so no one has to navigate this condition isolated or in the dark.
- In workplaces: We train businesses and leadership teams to encourage PMDD-inclusive workplaces, protecting careers and breaking down workplace stigmas.
- In policy & advocacy: We work directly with government bodies and policy makers to influence national healthcare strategies, demanding better standards of care and clinical guidelines.
- In research: We actively fund and support pioneering PMDD research alongside conducting our own small-scale studies, ensuring patient-lived experience directly shapes future clinical understanding.
PMDD, PME, ADHD and other overlaps
We also recognise that PMDD isn’t one-size-fits-all. Many people experience Premenstrual Exacerbation (PME), where underlying mental health conditions are significantly heightened premenstrually. There is also a massive overlap with neurodiversity - especially ADHD and autism - alongside intricate connections with OCD, perimenopause, trauma, and other contributing factors that uniquely shape each person’s experience. Navigating diagnosis takes time, but time and time again, the immediate relief comes from finding language that fits:
“I thought it was just me.”
“I thought I was going mad.”
“I thought I was just difficult.”
“I didn’t know this had a name.”
Those words fuel everything we do. Awareness is more than defining a term; it’s the transformative moment someone stops blaming themselves and realises they aren’t broken.
You are not alone with PMDD
While PMDD remains widely misunderstood, real change is underway. Through education, workplace policy shifts, clinical training, and groundbreaking research, we are shifting the narrative. Most importantly, we’re ensuring that no one has to walk this path alone.
The PMDD Project exists to be the sanctuary I so desperately needed years ago, a place that says: we believe you. A space where complex medical information is translated into human terms, where lived experience carries real weight, and where an entire community stands ready to support you.
Because finding out there’s a name for what you’re going through changes everything. And finding a community that truly understands is the first step toward feeling like yourself again.
