Ola Duda highlights the systemic gaps within menstrual research and how the realities, especially for neurodivergent women, are widely dismissed due to medical prejudice.

Let’s start off with a fun activity: Close your eyes and imagine a world where all cis-men also have monthly periods. Other than a lot more whining, I envision free menstruation products and far more research into the menstrual cycle. I don’t think that’s so far-fetched, considering:

a) toilet paper is free in public spaces, because everyone shits, and 

b) there’s five times more research into erectile dysfunction – which affects approximately 19% of men – than Premenstrual Syndrome (PMS) – which up to 90% of women experience throughout their lifetime.

Though recently increasing, the volume of research into periods and its associated conditions, like PMS/PMDD, is underwhelming and quite frankly…disappointing. Women have historically experienced discrimination – yes, my jaw stayed in place – with even the word ‘hysterical’ itself originating from the Greek word for ‘womb’. Just another inventive way to undermine women’s experiences!

Premenstrual Syndrome (PMS) is the name for symptoms like mood swings, tiredness, and bloating that women experience weeks before their period. Most menstruating people experience such symptoms, with 69% considering them debilitating enough to consider seeking medical help. Are these 69% of individuals ‘hysterical’? Are they looking forward to another doctor’s appointment that leaves them feeling undermined and crazy? 

What is PMDD? Firstly, it is short for ‘Pre-menstrual Dysphoric Disorder’, and it’s a cyclic depressive state that occurs 7-14 days before menstruation. It’s essentially a more severe version of PMS, with symptoms like depression, anxiety, extreme mood changes, anger, and irritability. 

This realm of research is also yet another example of how neurodivergent women are consistently neglected. PMDD has been shown by several studies to be more prominent in people with ADHD and autism. While 28.7% of the general population indicated PMDD, up to 45.5% of women with ADHD indicated prevalence for the condition. Even more so, 92% of women with autism in one study demonstrated PMDD, compared to 11% of the control population. This poses the question: why does the menstrual research that we get once in a blue moon ignore neurodivergent individuals?

Hormones may be invisible to the naked eye, but we should not underestimate the strings they pull in an individual’s life – strings that can radically shape one’s interpretations, feelings and cognition. Especially for neurodivergent individuals… These chemicals are not simply background noise; studies indicate hormonal fluctuations can even influence medication effectiveness.

Steward’s online survey unveiled a clear amplification of autistic-related challenges, such as sensory sensitivities and social difficulties, within autistic individuals during specific periods of their menstrual cycle, predominantly during the luteal phase. Oestrogen significantly drops during the luteal phase, therefore these findings suggest a plausible link between hormones such as oestrogen and symptom severity in autism. A narrative that views neurodivergence, hormones and menstruation as interconnected could be a helpful perspective to explore further research with.

Danielle Sullivan’s podcast journals her personal struggles associated with Autistic PMDD. “I started having these, like, rage attacks. Like I just couldn’t control my temper. I actively felt like I could not control my body and my words and my feelings. This is the first time in my life I ever felt like that and it was extremely alienating and scary, like frightening, actively frightening.” She also mentions it is a repetitive cycle, going from such extremes to suddenly feeling fine once her period arrives.

I, like many others, can vouch for this. Every now and then, I’ll wake up with a debilitating mental headspace which makes it hard to recognise myself. Don’t get me wrong, I love a good cry to the notebook, but I’m talking SOBBING for virtually no reason. I remember the exact thoughts going through my mind during such episodes: “Why am I crying?”, “Am I depressed?”, and intrusive thoughts that manage to scare me a little. Then the next day it’ll be like nothing happened. Ahhh, it’s just my period! Phew! But my question is, why is this draining, vicious cycle normalised? Where do we draw the line and say this is not normal, we need more research, attention and empathy regarding this?!

Globally, those with PMDD are seven times more likely to attempt suicide, with up to 15% of sufferers attempting suicide during their lifetime. If these statistics don’t underscore just how serious this is, I don’t know what will. A deficit in understanding PMDD naturally translates into a failure in treating, which, as illustrated above, can have detrimental consequences. Neurodivergent individuals can often find it difficult to access appropriate healthcare and communicate pain.

This can be illustrated by the “double empathy problem” proposed by Dr Damian Milton. It suggests that misunderstandings within healthcare can arise from neurological differences between the communicators: the professional and the patient. Moreover, medical settings don’t seem to be very sensory-friendly… bright white lights (reception should offer sunglasses on hand), strong smells, loud noises. These could also make individuals with autism and/or ADHD find it hard to communicate their concerns.

Together, this information should hopefully underscore the importance in investing more time, resources and support into the prevalence of PMDD within neurodivergent populations. Specifically, into the psychological and cognitive impacts it has on thousands of women, to contribute to the gap in literature and build more pathways to healthcare for those who need it.

For more information and advice:

National Sensory Network, Understanding Sensory Processing and Periods, https://www.nationalsensorynetwork.org/pages/understanding-sensory-processing-and-periods

National Autistic Society, Menstruation, https://www.autism.org.uk/advice-and-guidance/topics/physical-health/menstruation