Why receiving a diagnosis can take up to 11 years

Endometriosis is a condition in which uterine-like tissue grows outside of the uterus. These lesions can be present in several areas, including the ovaries, fallopian tubes, or bladder.

Endometriosis is chronic, and treatment mainly focuses on managing symptoms. The main symptom is pain, often in the pelvic area. The pain may occur at specific times, such as during menstruation. There may also be other symptoms, such as difficulty getting pregnant and fatigue. The symptoms of endometriosis may sometimes improve after menopause.

Dr. Ann Peters, an obstetric and gynecology specialist at Mercy Medical Center, who was not involved in the study, offered further insight into endometriosis to Medical News Today:

“[Endometriosis] is also a[n] extremely debilitating chronic disease that presents most commonly with painful periods but also a number of other complaints such as pain with intercourse, pain with bowel movements, diarrhea, constipation, urinary symptoms such as urinary frequency and urgency, heavy periods, chest pains, and chronic fatigue.”

“[One] out of 10 women are estimated to have endometriosis, but it is sometimes difficult to make the diagnosis because there currently are no noninvasive diagnostic modalities such as ultrasound or blood work testing that will reliably diagnose endometriosis.”
— Dr. Ann Peters

Researchers of the current review note that many women experience a delay in receiving an accurate medical diagnosis. They wanted to understand more about why this delay occurs.

T​his review included 13 articles that met strict eligibility criteria. All the studies included either women with endometriosis or healthcare professionals who had experience diagnosing endometriosis.

The review specifically focused on qualitative studies where participants shared their views on the journey of receiving an endometriosis diagnosis. Based on an analysis of these articles, the authors identified themes that fell into four categories contributing to delayed diagnosis:

• Individual factors
• Interpersonal influences
• Health system factors
• F​actors specific to endometriosis

A​t the individual level, they found that women struggled with understanding typical menstruation pain. For example, there was a common assumption among participants that the pain was typical and that they just had to deal with it. These ideas and the use of self-care measures to manage symptoms likely influenced the time of endometriosis diagnosis.

A​t the interpersonal level, researchers found that stigma surrounding discussing menstrual problems and society viewing menstrual pain as normal may have further contributed to delayed diagnosis.

Finally, healthcare and endometriosis factors influenced diagnosis timing. For example, participants reported general practitioners brushing aside concerns or appearing to lack knowledge about endometriosis. Similarly, healthcare professional participants also expressed inadequate training regarding endometriosis, and many noted they also lacked clear clinical guidelines for diagnosis.

There were further problems in communication. Healthcare professionals sometimes use oral contraceptives to aid in diagnosing and treating endometriosis. Participants did not always receive clear explanations of ruling out other diagnoses or the strategy behind oral contraceptive use.

Lack of tests for endometriosis

Healthcare professionals further noted that symptoms of endometriosis can overlap with symptoms of other conditions, making delays in diagnosis possible. Endometriosis is also challenging to diagnose because there aren’t noninvasive tests that can give an accurate diagnosis. There were delays in referrals.

One reason for this was the misconception that laparoscopic surgery is the only means of diagnosis. Healthcare professionals also had doubts about the usefulness of an endometriosis diagnosis.

Study author Dr. Sophie Davenport, a doctor in England who conducted this research as part of a dissertation in Public Health (MPH), explained how the approach to overcoming these barriers will need to happen on many levels:

“The key highlights of the data are that delays to diagnosis exist throughout the journey. We need to target these at different levels – from society recognising what ‘normal’ menstruation is and being open to discussing menstrual problems, to clinicians being well-educated and up to date on the presentation and diagnosis and listening to patients when they say their periods aren’t normal.”
— Dr. Sophie Davenport, study author

This research did have limitations that indicate the need for further research.

The studies included in the review were all conducted in high-income countries, and most of these countries had universal healthcare. Thus, it may not be possible to generalize the results, and this review doesn’t address financial barriers that may influence diagnosis.

Among studies that reported demographics, most participants were white women, indicating the need for more diversity in further research.

Among participants with endometriosis, the samples may be skewed toward those with more severe endometriosis.

In the studies that looked at the views of healthcare professionals, participants were doctors and mainly general practitioners. Further research could include other providers and specialists in the analysis. Finally, one reviewer conducted the review, introducing more risk for bias or method errors.

D​r. Davenport noted the following focus of continued research:

“A key area of research will be to investigate how [a] patient’s experiences of receiving a diagnosis of endometriosis change now that the clinical guidelines recommend treating empirically based on signs and symptoms, rather than a laparoscopic surgery being first-line. It was suggested in the papers that this deterred clinicians from referring women to specialist services and delayed women receiving a diagnosis and subsequent treatment.”
— D​r. Sophie Davenport

For those who think they may have endometriosis, seeking medical help is critical. This may include talking with a general practitioner. Dr. Davenport hoped their research would help encourage people and healthcare professionals to strive for prompt diagnosis.

“We would hope that the paper encourages patients to seek help if they feel that their periods are abnormal or causing them significant pain or distress, and [that it] encourages clinicians to take their concerns seriously and refer to specialist services early,” she said.

D​r. Peters further noted that women with endometriosis can support others and continue to raise awareness of the condition.

“I think one of the most important things that women can do if they have a diagnosis of endometriosis is to continue to speak out about their symptoms and also educate other women around them on this diagnosis and the different treatment options available, especially if somebody has had a positive experience and success story… Earlier awareness may lead to earlier diagnosis and management and allows often young woman to have early intervention before they develop more debilitating long-term pain.”
— Dr. Ann Peters