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 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 of Clinical Excellence to recommend exploring methods of reducing this gap in their official guidelines.2 This includes performing a diagnostic laparoscopy even when magnetic resonance imaging 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 through 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 endometriosis patients. 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:
- 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.
Diagnosis may also be masked by conditions mimicking endometriosis symptoms. If a gynecologist does not detect endometriosis through a diagnostic laparoscopy in patients presenting with symptoms, conditions such as irritable bowel syndrome are often diagnosed instead.
To unmask endometriosis, health care professionals recommended referral to a specialist gynecologist trained to manage the condition. Providers should also consider which type of specialist is most appropriate for managing a specific case.
The power of witnesses and barriers to care
The second theme highlighted ways in which possible endometriosis patients attempt to be heard in a clinical setting. In many cases, this involves a significant other, as clinicians are more likely to listen to the patient in the presence of a male partner. This alone often leads providers to consider a referral.
Additionally, the presence of another individual often helps women triangulate their endometriosis symptoms. Written documentation from another medical professional such as a GP also provides evidence indicating suspected endometriosis. According to participants, this highlights the value of communications between health care professionals.
Challenges discussed in the final theme included those relating to primary care, the differences between a generalist and specialist gynecologist, and interpretations of the term ‘chronic pelvic pain.’ Participants noted these hurdles all may contribute to diagnostic delay. Overall, the data highlighted how clinical complexity leads to delays in diagnosis.
“Health care professionals in this study described how endometriosis is often masked or rendered invisible, and how the presence of another person—most often a male partner—can legitimize symptom severity and influence referral decisions,” wrote investigators.
References
- Karavadra B, Thorpe G, Morris E, Semlyen J. Exploring delay to diagnosis of endometriosis, a healthcare professional perspective. BMC Health Serv Res. 2025;25(1):1483. doi:10.1186/s12913-025-13536-5
- Endometriosis: diagnosis and management. National Institute of Clinical Excellence. September 7, 2017. Accessed December 1, 2025. https://www.nice.org.uk/guidance/ng73.
