Breaking the stigma: Premenstrual Dysphoric Disorder (PMDD)

Posted April 28th 2023

Around 80,000 women and people who have periods are living with Premenstrual Dysphoric Disorder (PMDD) in the UK. Laura was diagnosed with PMDD in 2019 after living with symptoms for fourteen years. She has kindly shared her experience with the NCMH...

You’ve probably heard of PMS (Premenstrual Syndrome) – that time of the month where you may feel more emotional than usual, suffer with stomach cramps and maybe feel out of sorts in the run up your period. 

Premenstrual dysphoric disorder (PMDD) causes a range of emotional and physical symptoms every month during the week or two before your period. It is sometimes referred to as ‘severe PMS’. – Mind UK

The International Association for Premenstrual Disorders (IAPMD) describes Premenstrual Dysphoric Disorder (PMDD) as a cyclical, hormone-based mood disorder with symptoms arising during the premenstrual, or luteal phase of the menstrual cycle and subsiding within a few days of menstruation. 

What does Premenstrual Dysphoric Disorder (PMDD) mean to those affected by it? 

Well, if we break it down, ‘premenstrual’ means before the start of a period, and ‘dysphoric’ can be easily summed up as the opposite of euphoric, meaning a state of difficulty. According to Google, ‘disorder’ is defined as a ‘confused or messy state’. 

Therefore, PMDD can be defined as a ‘difficult, confused, and messy state before a period’.

But I also know what PMDD isn’t. 

Although PMS and PMDD are both linked to the menstrual cycle, as valid as it is, PMS is not thought to be as debilitating. 

I never connected how low I was feeling or even my physical symptoms with my menstrual cycle. I simply saw it as phases of depression.

Just as I would start thinking about discussing my symptoms with a doctor, my depression would lift and I would consider myself ‘cured’. 

I would associate my happier mood with the fact that I had eaten healthier and been active, and though there is a connection between these things, I realise now that this line of thinking can be dangerous. 

Here’s why: you feel good, seemingly because you’ve taken care of yourself, you give yourself a pat on the back.

You also pressure yourself to maintain this new healthy, happy lifestyle. But, when your mood dips (which, PMDD or not, it naturally will), the onus is of course because of your own inaction, and you ask yourself questions such as “Did I not do enough? Is this my fault?” 

PMDD can tear down the happiest of people. The fog arrives so quickly that you barely see it coming before it consumes you, and then when it lifts, you question just how bad it really was. 

The thing about PMDD is that it also perpetuates self-loathing.

If you’re already feeling responsible for your mood, add in that self-loathing and you end up in a really dark place of shame and embarrassment, about acting “so dramatic and emotional.”

Over the years I have been back and forth to the doctor’s and treated for my mood and migraines, but no connection was ever made – by them or me – with my menstrual cycle. 

I was always told to exercise more, and one occasion when I spoke about my concerns regarding my disordered eating, they weighed me and told me that whilst I was at the lower end of a healthy weight, it wasn’t low enough for it to be problematic. Instead, I was given a list of foods I should eat and sent on my way.

For years, this pattern continued – sometimes my symptoms would worsen and sometimes they wouldn’t be so bad, and I know now that’s because of the various contraceptives I have used over the years.

At the start of 2019, after a particularly bad Christmas, I decided I needed to work out what was causing my ‘dramatic mood swings’ and I started to keep a journal.

Honestly, with my self-loathing hat on, I presumed it would be something that I was doing (or even eating) that was causing me to ‘behave so erratically’.

By April, I had been journaling for a few months and whilst I hadn’t felt an improvement in my symptoms, this act of selfcare felt like a positive step.

One evening, I was sat scrolling through Instagram and I saw a friend’s post which described the symptoms of PMDD, and as I read through the list I had this huge light bulb moment.

All of the symptoms resonated with me and I was met with huge feelings of relief and validation.

However, this was short lived as I responded to this new information by telling myself I was probably just being dramatic again, and that I don’t actually have a condition; I’m just spoiled.

However, my journal proved me wrong and I was able to see from the last few months of documenting my mood that it was 100% in sync with my menstrual cycle.

Realising that actually, PMDD had probably affected me since I hit puberty, was life changing for me. 

It didn’t take me long to realise why I’d never heard of PMDD – it’s a cocktail of mental health stigma and period shame and definitely not something that is talked about or even acknowledged. I’d heard that because of this, getting a diagnosis could be difficult, and a few days later I went to my GP with my journal in hand ready to fight my case.

The first steps toward getting help

My doctor sat listening to me with a somewhat vacant expression whilst I explained that I had been tracking my symptoms, had done my research and I was quite certain I had PMDD.

I expected her to dismiss me – I had prepared myself for a battle and I was ready to think about getting second opinions and looking into private healthcare. But her reply was, “I’m not sure, but I think you might be right.”

I had recently had blood tests which ruled out other conditions and I had the evidence there to back me up, but I just couldn’t believe it – it felt like my fight was finally over.

Unfortunately, the fight was far from over, and despite me telling my doctor that my husband and I were considering starting a family soon, she prescribed the mini pill, which actually made my symptoms worse.

It was disheartening because I half expected her to wave a magic wand and cure me, and that hasn’t been the case. Despite feeling so lucky to have seen her that day and feeling grateful for my diagnosis, it’s clear that her knowledge of PMDD was limited. 

However, having my viewpoint considered and listened to validated my feelings. Although my doctor might not fully understand my condition, I hope that she will play a part in helping me to manage my symptoms, as will I.

But it’s not just down to a doctor to fix me, and equally it’s not down to me to fix myself either. This means I have to learn not to beat myself up when I don’t have a great day.

My doctor is an important ally for me in my battle against PMDD, but ultimately it’s me who needs to be speaking the loudest about my body.

Mind | Premenstrual Dysphoric Disorder (PMDD)

NCMH | Take part in our PMDD research

NCMH | New study aims to understand the causes of Premenstrual Dysphoric Disorder (PMDD)

NCMH | Hormones and my mental mealth: PMDD makes me whole