PMDD awareness: "It isn’t easy to talk about"

It isn’t easy to talk about Premenstrual Dysphoric Disorder – or PMDD.  

It’s no secret that stigma still exists about menstrual-related difficulties and their impact on health and wellbeing. It’s not always taken as seriously as it should be.  

When I was a child, I had severe acne. I was placed onto the contraceptive pill to help manage it and remained so, until my mid-twenties.  

For a range of reasons, I decided to come off the pill, and after a year or so, my acne came back with a vengeance. I then started to experience a whole array of other symptoms.  

“I’d become a prisoner in my own body”

My muscles would throb, as if I’d been on my feet all day. I had no energy and yet simply couldn’t sleep. I’d get angry, so angry, about things that often seemed  out of proportion to the situation – at least to those around me.  

My anxiety was worse than it had ever been, and I felt flat and hopeless, as if nobody liked me, and nothing was worth pursuing. I was constantly tearful and felt like a failure. 

For two whole weeks, every month, I’d experience this. The best way to describe it is feeling as if I’d become a prisoner in my own body. I wasn’t me. And then I would get my period and I’d be like, ‘what one earth was all that about?’. 

There’s a scene in the movie Twilight where the protagonist, Bella becomes a vampire (spoiler alert!) and her senses are completely maximised. It’s as if, when I’m out of my PMDD hole, everything is better: food is tastier, the sky is brighter, bluer, and I’m buzzing with energy.  

This used to worry me because there was such an extreme difference, but I realised quickly that I was just back to my ‘normal’ self. That’s the problem with PMDD – it strips you from your interests and enthusiasm. 

Picking up on PMDD patterns

I’m not sure how I first noticed the pattern with my cycle. I had countless GP visits and tests; I was extremely health anxious because some of my symptoms seemed so out of the blue, such as sharp pains, or a consistent cough, and I always thought I was coming down with something. Eventually, I put the pieces together.  

I’ve always tracked my cycle on an app called Clue, where you can log your mood, energy, sleep, exercise levels – all kinds of things. By using Clue, I noticed that these symptoms were consistently occurring at the same time every month and then they’d vanish.  

I was lucky enough to make the connection to Premenstrual dysphoric disorder and raise it with my GP.  

PMDD is a health problem occurring at the luteal phase of a person’s menstrual cycle and leads to various mental and physical symptoms, such as depression, anxiety, extreme irritability, lack of interest, tearfulness and fatigue.  

It’s considered an extreme form of PMS and can lead to suicidal thoughts and behaviours. It was both a relief and a burden to identify what was happening, as the condition needed managing.  

In terms of treatment, initially the GP recommended hormonal contraceptives or antidepressants to combat the mood difficulties. The latter can be taken during the luteal phase of your cycle.  

These methods aren’t effective for everyone and consequently some people proceed to have a full hysterectomy.  The problem is that limited research into this area exists and thus, so do effective treatments. 

Trial and error treatment

Because research into these areas is mixed, and lacking, it’s pretty much all about trial and error.  

For me, the real gamechanger has been diet and lifestyle changes. These are changes I have made over time and found to be helpful, such as reducing some inflammatory foods, eating more leafy greens and nutrients that my body may be lacking, a strict sleep routine, planning life around my cycle…I could go on.  

Most importantly, there is a strong connection between stress and PMDD. I find that if I have a tough time at work or at home then I tend to pay for it later during my luteal phase.  

Therefore, I’ve been taking measures to reduce my stress levels where possible. Reducing stress? My former self would have rolled my eyes at this, but who knew that small, simple changes could lead to such a positive impact?! 

Having support systems in place

I know that I am extremely lucky to have a supportive work environment. Built around trust, I am able to work flexibly during the times of my luteal phase if needed.  

Because of the nature of my job, I also have a good level of autonomy over my diary and can actively plan meetings and hefty tasks outside of my luteal phase.  

It’s important for employers to be accommodating for folks with PMDD. This could be achieved, for example, by introducing a policy which could enable people with PMDD to feel at ease and to thrive in their role.  

I also have an incredible partner, who works with me to identify what he can do to support me each month. As with any mental health condition, the impact of PMDD on relationships is not to be overlooked. I’ve found it so handy to surround myself with people who are understanding.  

Without research, how can we know where to start?

Because of these changes, I feel much less like I am picking up the pieces each month, after an episode. However, the condition isn’t going anywhere, at least not until more effective treatments are identified.  

It’s also important to say that I was lucky  enough to make the connection myself and flag it with my GP – not everyone connects the dots. This is because knowledge about this condition is still extremely limited, even with health professionals.  

PMDD awareness month is an opportunity to shed light on how debilitating it can be to live with, and to call for more research into the condition.  

After all, without more information, how can we know where to start improving things for people struggling with PMDD?