Key takeaways:
- Health care professionals report that endometriosis symptoms are often “invisible,” leading to missed or minimized patient concerns.
- The United Kingdom maintains an average 9-year diagnostic delay, prompting guideline updates urging earlier diagnostic laparoscopy.
- Providers struggle to distinguish between typical menstrual pain and symptoms suggestive of endometriosis, contributing to delayed recognition.
- Patients are more likely to be taken seriously when accompanied by another person—often a male partner—highlighting implicit bias in clinical encounters.
- Differences between primary care and specialist assessments, along with complex symptom presentations, create barriers that prolong the path to diagnosis.
Health care professionals have highlighted how endometriosis is commonly rendered invisible, indicating a need for providers to reconsider personal bias and preconceptions of endometriosis to better support their patients, with their findings published in BMC Health Services Research.1
Endometriosis has a diagnostic delay of 9 years in the United Kingdom, leading to organizations such as the National Institute for Health and Care Excellence to recommend exploring methods of reducing this gap in their official guidelines.2 This includes performing a diagnostic laparoscopy even when MRI and ultrasound pelvis findings are normal.1
“One of the major challenges in diagnosing endometriosis is the health care professional’s ability to differentiate between ‘normal’ and ‘abnormal’ menstruation pain,” wrote investigators.
Assessing provider approaches to diagnosis
The qualitative study was conducted to assess how health care professionals navigate diagnosing endometriosis and how this affects diagnostic delay. Focus groups were conducted with health care professionals such as general practitioners (GPs), primary care nurses, endometriosis nurse specialists, general gynecology nurses, and gynecologists.
At least 5 providers were included in each focus group, and all of them were providing care to patients with endometriosis. These participants completed interviews with a topic guide containing verbatim quotes from a previous trial.
A registrar in obstetrics and gynecology performed interviews with focus groups to obtain information about experiences in diagnosing endometriosis. Prior to conducting these interviews, the registrar attended multiple training sessions about conducting research interviews.
Each group was interviewed separately to avoid interference from any possible power dynamics. Audio recordings of the interviews underwent transcription followed by a 6-phased analysis. Following familiarization, initial codes were developed and used to generate initial themes, which were reviewed at 2 levels.
Theme development and validation
The first level involved reviewing the audio transcripts to ensure they fit within a particular theme. At the second level, investigators explored the themes within a wider dataset to determine if they were connected. Overall, 3 themes were identified, including the following:
- Masking and unmasking the symptoms
- Power of the witness in diagnosis
- Experiences that hinder the threshold to diagnosis
In the first theme, the challenges of interpreting pain symptoms were highlighted. Health care professionals noted how endometriosis is often hidden, with pain being difficult to quantify. This makes it difficult for providers to respond to reports of pain, as they will be unable to visualize it and understand its severity.
