Endometriosis: A Rare Diagnosis for a Common Condition

Addressing endometriosis diagnostic delay requires broader changes in how healthcare systems and society as a whole treat women’s pain.

By Kimberly Yang

An estimated 190 million women and girls worldwide suffer from endometriosis, a chronic and painful condition where uterus lining grows outside the uterus and bleeds with no way to exit the body. But for many of these women, this debilitating pain goes unnamed for far too long. 

Endometriosis affects around one in ten women of reproductive age, yet obtaining a diagnosis often takes years. According to the World Health Organization (WHO), the average time to diagnosis ranges from 4 to 11 or 12 years. The challenge of diagnosis of endometriosis arises in multiple facets of both the healthcare system and societal perception of the condition. Endometriosis diagnosis delay represents a cascading failure that unfolds across numerous stages, with various structural and systemic factors heavily contributing to the delay.  

A 2025 study published in the Journal of Psychosomatic Research found that the average diagnostic delay in Australia was 12.3 years long and increasing over time, while another 2024 study published in BJOG: An International Journal of Obstetrics & Gynaecology found that the average diagnostic delay reported from studies in the United States was between 5 and 8 years. This delay is due in part to the fact that symptoms can vary widely between individual patients. According to Mayo Clinic, endometriosis can present as infertility, painful periods, excessive bleeding, fatigue, nausea, or even no symptoms.

Despite its prevalence, there is no existing standard cure for endometriosis. According to the WHO, current treatment options are limited and usually focus on managing symptoms. However, even without a definitive cure, diagnosis is still deeply important for patients suffering from endometriosis. Without a diagnosis, patients are left in a state of uncertainty: they must manage the pain without knowing the cause, sometimes even questioning whether it is a real and serious condition as a result of medical dismissal and societal stigma. Another Australian study published in 2026 by the Journal of Psychosomatic Research found that patients with undiagnosed, suspected endometriosis reported higher pain and anxiety levels than patients with diagnosed endometriosis, suggesting that diagnosis may be associated with lower pain and anxiety levels. 

“[Patients] really value a diagnosis,” Danielle Mosterd, the lead author of the study, explains how not knowing what is going on in your own body can be scary. “That uncertainty is so distressing [and] anxiety-provoking.”

Dismissal Delays Diagnosis

Evidence has piled up supporting the importance of endometriosis diagnosis, yet this is a stark contrast to how long most patients have to wait for one. 

Endometriosis diagnosis is therefore “a multi-stage failure,” says Dr. Amanda Mason-Jones, an associate professor of global public health at the University of York. “It occurs across individual, interpersonal, institutional, community, and public policy levels.” From the earliest symptoms the patient notices to the final verdict of diagnosis, delays accumulate at nearly every step of the process.

Before patients even begin to seek medical care, the societal stigma surrounding menstrual health can discourage them from recognizing their symptoms as abnormal. Patients often internalize messages that their endometriosis pain is normal or “just a bad period”.

“There’s a lot of stigma in the world around periods and pain,” Mosterd says. “It often results in people feeling unable to seek help because of that normalization.” By the time patients do enter the healthcare system to seek care for their symptoms, they may have already experienced years of unmanaged pain.

Once patients do seek care, the path to diagnosis remains full of obstacles. Clinical attitudes and bias in diagnosing endometriosis symptoms are one of the biggest contributing factors to diagnostic delay. 

Mosterd’s research surveying endometriosis patients found that dismissal and disbelief from and by doctors was the most common reason for delay. Many patients in the study reported that medical professionals told them that their pain was normal or just psychological. 

The Healthcare System Fails Patients Repeatedly

Some examples of clinical barriers include gaps in provider training that result in inconsistent symptom recognition, as well as fragmented referral and care systems. A patient can be misdiagnosed, referred to multiple different providers, and repeatedly cycle through discrepant treatments, without actually receiving a definitive diagnosis at the end of it all.

These interactions have lasting consequences, as patients often disengage from seeking care after experiencing distressing and negative interactions with medical professionals. Even if a patient’s symptoms persist or worsen, previous experience of feeling dismissed by clinical professionals make the patient much less likely to continue seeking care. In this way, the patient drops out of the diagnostic pathway and the delay to diagnosis increases. “[Patients] lose confidence in going back to the doctor,” Mosterd says. “If you’re constantly told it’s normal, of course you don’t want to go back.”

The structure of healthcare systems themselves also play a large role in diagnostic delay, with variation worldwide. According to a 2024 study published in Health Care for Women International by Mason-Jones and two colleagues that conducted a scoping review of endometriosis diagnostic delay, the average delay worldwide from symptom onset to diagnosis was around 6.8 years, and the average delay by country ranged from half a year in Brazil to as long as 27 years in the United Kingdom (UK). Delay length was associated with the country’s type of healthcare system—public or private—which influences wait times and specialist access. “We found that the system breaks down at every major transition point.” Mason-Jones says.

Road to Simplifying Diagnosis

When patients do manage to reach specialist care, diagnosis remains difficult. Currently, the gold standard for diagnosing endometriosis is laparoscopic surgery, an invasive procedure that uses a tiny camera inserted through small incisions to diagnose and treat conditions. As a surgery, it carries implicit risks, costs, and access barriers. 

“Recommending a surgery to figure out if you have something is not successful or an efficient means of getting to a diagnosis,” says Somer Baburek, co-founder and CEO of Hera Biotech, a startup aiming to commercialize a minimally invasive diagnostic for endometriosis. Because of this, laparoscopic surgery is often delayed until symptoms become severe enough to justify the procedure. For patients, this means that they must undergo an invasive procedure with no guarantee of actually obtaining a definitive diagnosis at the end.

Research increasingly describes endometriosis diagnosis as a cumulative process of delays rather than a single missed opportunity. All of these systemic and structural factors combine to contribute to an astounding magnitude of failure in timely diagnosis, with significant barriers appearing at every stage of the pathway. As a result, diagnosis is so elusive that an estimated 60% of endometriosis cases go undiagnosed, according to a 2019 article published in the American Journal of Obstetrics & Gynecology.

In response to these diagnostic challenges, new diagnostic technologies have emerged as a potential non-invasive alternative for diagnosis. Among these diagnostics include blood-based markers, molecular assays, and tissue-based tests designed to detect endometriosis without surgery. Hera Biotech, for example, is developing a diagnostic called metridx™ to diagnose endometriosis from a routine clinical visit. These new diagnostic tests offer the promise of more affordable diagnostics that patients can access earlier in the diagnostic pathway than laparoscopic surgery. 

“This will significantly increase access,” Baburek says, likening the predicted trajectory of these diagnostics to the quantitative polymerase chain reaction (qPCR) tests that became widely accessible during the COVID-19 pandemic.

The Need for Systemic Change

However, many obstacles still stand in the way of the successful launch and adoption of these new diagnostics. Because endometriosis is a complex condition influenced by hormonal fluctuations that can present in varied ways, identifying consistent biomarkers is significantly difficult. Even with promising new diagnostics on the horizon, accessibility and feasibility of adoption remains a concern. Although new diagnostics may make access easier for some patients, they do not fully address the deeper structural problems that span the multi-stage failure of timely endometriosis diagnosis in the status quo. These issues include equitable access, clinical attitudes, and societal stigma around the condition.

“It’s not just about getting fancier diagnostic tools,” Mason-Jones says. Although promising, focusing solely on new diagnostic technology may risk overlooking deeper issues. Another significant factor is lack of awareness.The lack of understanding and knowledge of the disease permeates both the professional and public spheres across every stage of the diagnostic process. Patients and medical professionals alike are often not aware enough of the condition and its potential symptoms, hindering symptom recognition and timely diagnosis on both sides.

Achieving new diagnostics “is premature, given what we know about the disease,” Baburek says. Progress will inevitably be delayed, she says, “if you can’t even agree as a scientific community about how the disease begins; if you can’t understand why it progresses the way it does in some patients and others.”

Instead, effectively addressing endometriosis diagnostic delay requires broader changes in how healthcare systems and society as a whole treat women’s pain. Dismissal and bias are all too common.

“There seems to be a persistent perspective reported where women’s pain is seen as normal, unavoidable, and also not particularly urgent,” Mason-Jones says. Medicine only seems to take endometriosis seriously when it threatens women’s fertility, she adds: “Unless the woman is trying to conceive, there seems to be a lack of interest from healthcare professionals.”

Experts recommend clinical training for better symptom recognition and eliminating bias, as well as reducing stigma around endometriosis and menstrual health, as potential first steps towards mitigating the diagnostic delay too many patients face today. Greater investment in research is also critical. Endometriosis, which affects over 10% of women, is by no means a rare condition, but scientists and medical professionals still do not have a sufficient understanding of it. Even what exactly causes the condition is still unknown.

A diagnosis does not cure endometriosis for a patient, but it offers patients a name for the often debilitating pain that they experience. Until there is systemwide change in increased awareness, better clinical training and access to system resources, as well as a deeper understanding of the condition itself, diagnosis will remain out of reach for millions of patients worldwide.