When Pain Is Dismissed: The Cost of Not Believing Endometriosis Patients
Pain is often one of the first ways endometriosis announces itself.
It may begin with periods that make it impossible to attend school. Pain that interrupts work. Pelvic pain that continues long after menstruation ends. Pain during sex, bowel movements or urination. Pain severe enough to send someone searching for answers.
But seeking medical care does not always mean receiving care.
For many people living with endometriosis, there is another experience layered on top of the physical pain: the experience of not being believed.
Their symptoms may be called normal. Their pain may be minimized. They may be told they are too young, too anxious, too sensitive or simply experiencing what everyone with a period experiences.
And sometimes, after repeatedly seeking relief from severe pain, a patient may begin to feel as though asking for help itself has become something they must defend.
Dismissal Is Not a Minor Experience
Endometriosis is already associated with substantial diagnostic delay. The World Health Organization estimates that diagnosis currently takes an average of 4 to 12 years. WHO also identifies the normalization and stigmatization of pain and other symptoms as part of the challenge surrounding endometriosis care.
Research examining patients' experiences helps us understand what those years can contain.
In a study of more than 2,000 people with endometriosis across 63 countries, participants reported an average total diagnostic delay of 9.6 years. Their accounts included physicians normalizing symptoms, patients feeling ignored or considered unreliable, and dismissal associated with characteristics such as age, appearance, weight or physical ability.
A New Zealand study found something particularly striking. Participants who did not report dismissal experienced a significantly shorter average diagnostic delay—4.6 years compared with 9 years among those who reported dismissal. The researchers found that when clinicians classified symptoms as “normal,” patients could begin doubting their own experiences, making it more difficult to continue seeking diagnosis and effective treatment.
Dismissal, then, is not merely an unpleasant interaction.
It can alter a patient's path to care.
When “Normal” Becomes a Barrier
There is a difference between menstrual discomfort and pain that disrupts a person's ability to function.
Yet generations of people have been taught that significant menstrual pain is simply something to tolerate.
That normalization can happen at home, among friends, in schools, at work—and inside healthcare settings.
When someone repeatedly hears that their pain is normal, they may stop asking whether something is wrong. They may postpone another appointment. They may learn to work through symptoms, miss school quietly or rearrange their lives around pain.
Research into endometriosis stigma has identified normalization of menstrual symptoms and stigma surrounding menstruation as potential contributors to delayed diagnosis and poorer psychosocial well-being.
The question should not simply be:
“Do periods hurt?”
A more meaningful question is:
“What is this pain preventing you from doing?”
The Cost Continues After Diagnosis
Receiving an endometriosis diagnosis does not automatically end the struggle to have pain taken seriously.
People living with established disease may still need urgent or emergency care when symptoms become severe. Yet the experience of seeking that care can be unpredictable.
A 2024 qualitative study of women with endometriosis who frequently sought emergency care found that several described those visits as a “lottery” because they did not know what treatment they would receive. Being listened to was identified as especially important, and most did not have individualized care plans despite repeatedly needing emergency services.
That matters.
A patient should not have to wonder whether today's clinician will believe the disease documented in yesterday's medical record.
Pain Relief Should Not Require a Defense of Character
Pain management is complicated. Clinicians must make individualized decisions about medications, risks, contraindications and appropriate treatment.
But those clinical responsibilities should not erase another responsibility:
to listen.
People living with chronic pain can find themselves trying to communicate something inherently difficult to communicate. Research examining how people describe endometriosis pain found that patients often struggle to find language capable of conveying its severity—and many reported feeling dismissed during early medical consultations.
A person's inability to perfectly describe pain does not make the pain less real.
Returning for care does not make the pain less real.
Needing relief does not make the pain less real.
And at EEI, we believe this distinction matters:
Needing pain control is not the same as being labeled “drug-seeking.”
Pain should be assessed clinically—not morally.
What Believing Patients Actually Means
Believing a patient does not mean abandoning clinical judgment.
It means beginning clinical judgment from a place of curiosity rather than suspicion.
It means asking better questions.
How long has this been happening?
What does the pain feel like?
What happens when symptoms are at their worst?
What treatments have already been attempted?
How is this affecting work, school, sleep, relationships, mobility or the ability to care for yourself?
What has changed?
And perhaps one of the most important questions:
What do you need us to understand about what you are experiencing?
Research continues to document how much the relationship between patient and healthcare professional can shape the endometriosis experience. A 2025 qualitative study found that healthcare providers could function either as sources of support or as barriers within treatment, with participants describing both dismissal and trivialization as well as empathic, supportive interactions.
Listening is not an alternative to medicine.
Listening is part of medicine.
The Cost of Disbelief
When endometriosis pain is dismissed, the consequence may extend far beyond one disappointing appointment.
It can mean another year without a diagnosis.
Another missed day of work.
Another absence from school.
Another emergency visit.
Another person wondering whether the pain really is “all in their head.”
Another patient deciding that seeking care is no longer worth the humiliation of trying to prove that they hurt.
Recent research involving endometriosis patients from multiple ethnic, gender and sexual-identity groups found recurring themes of pain normalization and dismissal and concluded that these experiences can harm patients' diagnostic journeys, sense of self and ability to manage their disease.
That is why changing endometriosis care requires more than better diagnostic technology.
It also requires changing what happens when a person first says, “Something is wrong.”
An EEI Perspective
Endometriosis is complex. Pain is complex. Healthcare systems are complex.
But believing that someone's suffering deserves thoughtful investigation should not be complicated.
Patient-centered care does not require clinicians to know every answer immediately.
It requires taking the question seriously enough to keep looking.
At the Endometriosis Equity Initiative, we believe reducing diagnostic delay and improving access to appropriate care must include confronting the culture of normalization and dismissal that too many people with endometriosis encounter.
Because being heard should not depend on finding the right doctor on the right day.
And no one should have to become an expert at proving their pain before they are allowed to receive care.
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