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Low patient awareness of non-surgical diagnosis and preoperative imaging for bowel endometriosisSurvey shows mixed awareness of imaging for endometriosis diagnosis

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Key Takeaway
Note the disparity between patient awareness and clinical evidence regarding preoperative imaging for bowel endometriosis.

This guideline is based on a cross-sectional study of 142 women and gender-diverse individuals to assess awareness of preoperative imaging for endometriosis. The primary finding is a significant gap in patient knowledge regarding non-surgical diagnostic pathways. Specifically, 53.5% of participants agreed that endometriosis can be diagnosed without surgery, while only 32.4% agreed that bowel endometriosis could be diagnosed before surgery.

Regarding specific imaging modalities for bowel endometriosis, awareness was low across the board: 32% for ultrasound, 35% for magnetic resonance imaging, and 15% for both computed tomography and colonoscopy. The study also identified primary sources of patient knowledge, with 71.8% citing gynecologists, 57% citing general practitioners, and 68.3% citing social media.

A noted limitation of the data is the potential for misinformation disseminated via social media. These findings highlight a disparity between patient awareness and the available evidence regarding preoperative imaging for deep endometriosis. Clinicians may need to address these knowledge gaps when discussing diagnostic pathways and the role of imaging in managing bowel endometriosis.

How this fits prior evidence

This guideline addresses a gap in patient awareness regarding the diagnostic pathway for endometriosis. While prior evidence confirms that hormonal therapies reduce pelvic pain and that dietary components may modulate the inflammatory environment, this finding highlights that patients may lack awareness of non-surgical diagnostic options and the specific role of preoperative imaging for bowel endometriosis.

Living with endometriosis often means navigating a complex path toward a diagnosis. A recent survey of 142 women and gender-diverse individuals found that many patients are still unsure about the tools available to diagnose the condition before surgery. While 53.5% of participants knew that surgery is not the only way to find endometriosis, many were less familiar with specific imaging techniques.

When it comes to bowel involvement specifically, awareness dropped significantly. Only 32.4% of people knew that bowel endometriosis could be diagnosed before surgery. Furthermore, only 35% knew about the use of MRI, 32% knew about ultrasound, and only 15% were aware of CT scans or colonoscopies as options.

Most people gathered their information from gynecologists (71.8%) and social media (68.3%). However, the study notes that social media can sometimes spread incorrect information. These findings suggest a gap between what patients know and the medical evidence available regarding pre-surgical imaging.

What this means for you:
Many people with endometriosis are unaware of the specific imaging tools available to diagnose the condition before surgery.

Common questions

Can endometriosis be diagnosed without surgery?

Yes, the survey found that 53.5% of participants agreed that endometriosis can be diagnosed without surgery. However, many people still lack specific knowledge about the different imaging tools available to make that diagnosis before a procedure takes place.

What imaging tests are used to find bowel endometriosis?

The survey showed varying levels of awareness for specific tests. Only 35% of people knew about MRI, 32% knew about ultrasound, and only 15% were aware of CT scans or colonoscopies for diagnosing bowel endometriosis before surgery.

Where do people get their information about endometriosis?

Most people reported getting their information from gynecologists (71.8%) and social media (68.3%). Some also heard about treatments and investigations from general practitioners (57%).

Study Details

Study typeGuideline
EvidenceLevel 5
PublishedSep 2026
View Original Abstract ↓
IntroductionIn 2024, an international consensus statement on non-invasive imaging techniques for the diagnosis of pelvic deep endometriosis was published, recommending transvaginal sonography as the first-line imaging modality because of cost, availability, and low impact on the environment. Despite the increasing body of evidence supporting the use of imaging in the preoperative diagnosis of endometriosis, there is a paucity of data to confirm patient awareness. The aim of this study was to use an online survey or questionnaire from patients to collect quantitative data regarding their awareness, exposure, and experience with preoperative imaging for the diagnosis of endometriosis.MethodsThis was a cross-sectional study, based on an online, international survey completed by patients with self-reported endometriosis from multiple online endometriosis groups. The survey went live from November 2025 to March 2026 and consisted of women and gender-diverse individuals with self-reported endometriosis, with a minimum required number of 100 participants.ResultsA total of 180 participants started the survey, of which 142 (78.9%) completed the exercise. The mean age of the participants was 31.6 [standard deviation (SD) 8.7] years, with a median time of endometriosis diagnosis of 2 years (interquartile range 1–5), of whom 99 (69.7%) had at least one surgery, with a mean number of surgeries of 1.8 (SD 1.2). The majority of participants were from Australia (66.2%), followed by Canada (16.9%), New Zealand (11.3%), and the United Kingdom (2.1%), and an equal number were from Brazil, India, the Philippines, and Spain (0.7% each). Overall, 53.5% of participants agreed that endometriosis can be diagnosed without surgery, while only 32.4% agreed that bowel endometriosis can be diagnosed before surgery. Of these, the percentages of participants who agreed that bowel endometriosis can be preoperatively diagnosed with ultrasound, magnetic resonance imaging, computed tomography, and colonoscopy were 32%, 35%, 15%, and 15%, respectively. The participants obtained knowledge about endometriosis investigations and treatments from various sources, including their gynecologists (71.8%), general practitioners (57%), fertility specialists (11.3%), family members (12%), friends (21.8%), social media (68.3%), and other sources (29.6%).ConclusionThere is a disparity between participant awareness in our study and the evidence in the literature regarding the availability and accuracy of preoperative imaging for the diagnosis of deep endometriosis, possibly due to the misinformation disseminated via social media.
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