Endometriosis and medical trauma: How pain dismissal shapes the patient experience

Medical trauma is the psychological and emotional distress that can result from negative or dismissive experiences with the healthcare system. For many people with endometriosis, this trauma can stem from medical gaslighting and diagnostic delays.

Endometriosis affects around 1 in 10 women and people with cycles, yet it remains widely underdiagnosed and misunderstood. Many people spend years seeking answers and often face dismissal, which can have long-term impacts on their physical and mental health. 

We spoke with Dr. Charis Chambers, Chief Medical Officer at Clue, to find out more about medical trauma and endometriosis.

In this Ask the Expert Q&A, she answers key questions about endometriosis diagnosis delays, why people's pain is often not believed, and what this means for their mental and physical health.

Key takeaways: 

• Endometriosis is often underdiagnosed and misdiagnosed, with delays linked to symptom overlap and a lack of understanding about the disease in general

• People can experience medical trauma as a result of having their pain dismissed and facing a lack of informed, patient-centered care

• Tracking symptoms and cycles can support diagnosis and help people advocate for themselves

1. Why is medical trauma so prevalent among endometriosis patients?

Medical trauma is so prevalent among patients with endometriosis because the condition intersects pain, diagnostic uncertainty, and the historical dismissal of women’s symptoms in medicine.

Pain is inherently subjective. It can’t be seen on an imaging study or measured with a lab test. That creates an unfair burden on patients to prove their suffering. Many feel as though they must campaign to be believed.

Layer chronic pain on top of that dynamic, and it becomes exhausting. Patients gather the courage and language to describe deeply personal symptoms, often involving the most intimate parts of their bodies, only to feel dismissed or minimized. 

Experiencing that disbelief once is painful. Experiencing it repeatedly, across multiple appointments and over many years, can be deeply traumatizing.

2. Why is it so difficult to get an endometriosis diagnosis?

Endometriosis shares symptoms with many other conditions, which contributes to frequent misdiagnosis and long diagnostic delays. Patients may go through treatment after treatment that doesn’t work, leaving them questioning their own experiences and wondering if relief will ever come.

The broader history of medicine also plays a role. Women’s pain has historically been minimized, and that legacy still influences how symptoms are interpreted today. It can also lead to invasive exams or procedures being performed without enough emphasis on shared decision-making, patient comfort, or truly informed consent.

The lack of understanding around endometriosis itself is another major factor. The disease is complex, but it has also been chronically underfunded and under-researched compared to many other conditions. Medical training often dedicates limited time to endometriosis, leaving many clinicians without the depth of knowledge needed to recognize and manage it effectively.

3. What is the long-term impact of a delayed endometriosis diagnosis?

The long-term impact of delayed diagnosis and dismissal on women’s health can be profound. Beyond the physical pain, patients often experience depression, strained intimate relationships, disruptions to their education or careers, and, in some cases, impaired fertility. 

Over time, repeated dismissal can also erode trust in the healthcare system, making people less likely to seek care when they need it most. At its core, the trauma many endometriosis patients experience isn’t just about the condition itself.

It’s about the experience of not being believed while living with it.

For women navigating these experiences, the most important thing to remember is that your pain is real and worthy of attention, compassion, and care. If something about your symptoms feels wrong or persistent, it’s okay to keep asking questions and seeking answers.

Keeping a record of symptoms, menstrual patterns, and how pain affects your daily life can help your healthcare provider better understand what you’re experiencing. It can also be helpful to seek providers experienced with endometriosis who prioritize collaborative, patient-centered care. 

Most importantly, patients should know that needing to advocate for themselves does not mean they are difficult. It means they are responding appropriately to a system that has not always listened well to women.

4. How can tracking help if you suspect endometriosis?

Tracking your endometriosis symptoms and menstrual cycle can help both you and your healthcare provider better understand patterns over time, which can support earlier recognition and diagnosis of endometriosis. 

Because receiving an endometriosis diagnosis can take years, keeping a detailed record of symptoms such as pain levels, bleeding patterns, digestive issues, and mood changes can help facilitate earlier intervention, diagnosis, and treatment.

Digital health tools like Clue allow people to capture far more than just the start and end dates of their period. Clue offers over 200 tracking options, enabling people to log detailed information about their cycles and overall health. Over time, this creates a longitudinal health record that can reveal patterns that might otherwise be overlooked. 

For the many people with endometriosis who have previously felt dismissed or unheard, tracking can support self-advocacy by shifting conversations from memory-based recall to clear, documented evidence.