Why is PMDD so often missed?

Premenstrual dysphoric disorder (PMDD) is a condition marked by severe mood, cognitive, and physical symptoms in the days before a period, and it has been an official diagnosis since 2013. Yet many people still spend years being told they’re overreacting, stressed, or "just hormonal" before anyone looks at the pattern behind their symptoms. 

Clue is now part of research that aims to change that, including a collaboration with researchers at Cardiff University on how PMDD shows up in real life. We asked Amanda Shea, PhD, from Clue’s Science Team why PMDD is so often missed, what treatment looks like, and how research can help close the gaps.

Want to know more about PMDD? Start with PMDD 101: treatment, symptoms, and support.

Key takeaways: 

• PMDD is still often dismissed as "bad PMS": stigma, limited awareness among healthcare providers, and symptoms that overlap with depression and anxiety all play a part

• It falls between mental and reproductive healthcare, so people can be passed between providers and wait years for a diagnosis

• Effective treatments exist, but many people are never offered them, and not everyone responds the same way to each treatment

• Research using real-world tracking data, including Clue’s collaboration with Cardiff University, aims to help improve how PMDD is recognized and treated

Why don’t people take PMDD seriously?

PMDD, or premenstrual dysphoric disorder, is a severe cyclical condition that affects mood, cognition, and daily functioning in the days before a period, and is estimated to affect around 1.6% (roughly 1 in 60) of women of reproductive age. But it is still widely misunderstood and often dismissed as just "bad PMS."

Part of the reason is stigma: PMDD sits at the intersection of menstrual stigma, mental health stigma, and medical misogyny, so symptoms are often normalized or trivialized rather than taken seriously. People with PMDD are often told they’re "overreacting," "hormonal," or "just stressed."

PMDD is also a relatively recent formal diagnosis. It was only recognized as a distinct disorder in the DSM-5 (the main psychiatric diagnostic manual) in 2013. It was later included in the ICD-11 (the World Health Organization’s international disease classification system), which was adopted in 2019 and came into effect from 2022, where PMDD was classified primarily as a gynecological condition. Diagnosis and treatment have not yet become standardized in routine care.

Why does PMDD get missed or misdiagnosed?

PMDD can be difficult to diagnose. Diagnosis typically relies on daily symptom tracking across at least two menstrual cycles to identify a pattern of symptoms appearing before menstruation and improving shortly after. However, PMDD can look quite different from person to person, and researchers are still working to better understand its symptoms and how to best diagnose it.

Many symptoms also overlap with other conditions like depression and anxiety, meaning PMDD can be easily missed if clinicians are not specifically looking for a cyclical pattern.

PMDD also often falls into the gap between mental health and reproductive health, so people can be passed between providers without getting the support they need.

Taken together, these challenges make it difficult for people with PMDD to get an accurate diagnosis and appropriate care.

Why do people with PMDD struggle to get treatment, and what options are available?

Research suggests that PMDD is often underdiagnosed and undertreated, even though evidence-based treatments do exist.

People with PMDD commonly report long delays to diagnosis, having their symptoms dismissed or misdiagnosed, seeing multiple providers before receiving appropriate care, or being treated for depression or anxiety without anyone recognizing the connection between their symptoms and the menstrual cycle.

And importantly, even after receiving a diagnosis, finding effective treatments can be challenging. Not everyone responds to treatments in the same way, and finding the right approach can take time.

Evidence-based treatment options for PMDD include:

• SSRIs (antidepressants): First-line treatment with strong evidence; can be taken continuously or only during the luteal phase.

• Hormonal contraception: Some combined oral contraceptives (especially those with drospirenone/ethinyl estradiol) may help, but they do not work for everyone, and for some people, they can worsen mood symptoms.

• Psychological therapies: Approaches like cognitive behavioral therapy (CBT) can help manage symptoms and their impact on daily life, particularly alongside other treatments.

• Lifestyle and symptom management: Things like exercise, good sleep habits, symptom tracking, and nutritional strategies may help people manage their symptoms, but they are generally recommended in addition to other treatments rather than substitutes for them, particularly in more severe cases.

• Specialist care: For people with more severe symptoms or who don’t respond to initial treatments, more intensive hormonal suppression or other specialist interventions may be considered, but these are not typically first-line.

What do people with PMDD say about getting care?

We see recurring patterns in our feedback from Clue members about their experiences with PMDD, particularly around recognizing symptoms and getting appropriate care. 

Many people describe feeling like they were "going crazy" for years. Some experience severe mood changes or even suicidal thoughts for a few days each month without understanding why. Often, they only recognize the cyclical nature of their symptoms after tracking, and that recognition can be a turning point.

Just understanding that symptoms are linked to the menstrual cycle can also make them feel more manageable. People can anticipate difficult days, put support in place, and communicate more confidently with a healthcare provider.

Read how one Clue member tracked her moods to validate a PMDD diagnosis.

We also consistently hear about challenges in getting care: not being believed, being told it’s "just a few days," being misdiagnosed, or seeing multiple providers without clear answers. Some are told hormonal contraception is their only option, even when it doesn’t work for them or isn’t appropriate.

Why is research on PMDD needed?

PMDD is a serious condition that is still too often missed, misunderstood, and inconsistently treated. Building a stronger evidence base is essential to improving diagnosis, treatment, and care.

Research can help improve diagnosis by identifying clearer symptom patterns and improving screening approaches, making it easier to recognize PMDD earlier and more accurately.

It is also needed to better understand how PMDD shows up in real life. It doesn’t look identical in every person. Symptoms, severity, timing, and co-occurring conditions vary widely, and larger, real-world studies are essential to move beyond a one-size-fits-all understanding.

Research can also improve treatment pathways. While there are evidence-based treatments, not everyone responds the same way, and many people are never offered appropriate care. Research helps us understand what works, for whom, and where people are still falling through the cracks.

How is Clue helping to close the gaps in PMDD research?

Clue’s research aims to better understand how people experience PMDD in their daily lives, capturing symptom patterns and differences between individuals that traditional research approaches may miss.

Much of women’s health research has historically relied on small clinical samples or one-off assessments. These are not well suited to capturing conditions that fluctuate over time. Many menstrual and reproductive health experiences, including PMDD, are dynamic, vary greatly across individuals, and only become clear when viewed over many cycles.

That’s where Clue can contribute. We can study these experiences at scale, in real-world settings, using long-term data from millions of users around the world. One example is our collaboration with researchers at Cardiff University. This study examines symptom patterns and co-occurring conditions in people with and without a PMDD diagnosis to better understand how it presents in real life and where there may still be gaps in recognition and diagnosis.

We also conduct our own internal research on how people use menstrual tracking to manage their cycle-related health, including mental health. This helps us understand not just what people experience, but how they interpret those patterns, prepare for symptoms, and decide when to seek care. 

Our recent survey research showed that tracking helped many users better understand their bodies, feel more prepared for symptoms, and feel more confident communicating with healthcare providers.

Ultimately, the goal is to build a stronger evidence base for aspects of health that have historically been under-measured or dismissed, and to ensure those experiences are better recognized and supported.