4 to 11 Years: The Diagnosis Gap That Harms Women With Endometriosis - A New Tool

A new guideline shifts toward clinical diagnosis, but the real problem is what happens in the exam room: not enough time, not enough questions, not enough listening.

A woman sits in her gynecologist’s office. She has severe menstrual cramps that started in high school. Pain during sex that she has never mentioned because she assumed it was normal. Bloating and bowel changes every month that she chalks up to diet. She fills out a form, gets a Pap smear, and leaves. Fifteen minutes, start to finish.

She will not be diagnosed with endometriosis for another seven years.

This is not a rare story. It is the most common one. Patients with endometriosis wait an average of 4 to 11 years from the onset of symptoms to a diagnosis (1). During those years, disease can progress, new symptoms can develop, quality of life deteriorates, and healthcare costs accumulate (2). By the time these women finally get a name for what they have, many of them say the same thing: “Why didn’t anyone ask me these questions sooner?”

The 10 to 15-Minute Problem

The barriers to timely endometriosis diagnosis are well documented. ACOG’s own new Clinical Practice Guideline No. 11, published in March 2026, catalogs them clearly: the variability of symptoms, the broad differential diagnosis for pelvic pain, the lack of a noninvasive diagnostic test, and the normalization of menstrual pain at both the societal and clinician level (1). Black women are significantly less likely to be diagnosed (OR 0.49, 95% CI 0.28–0.83), a disparity driven in part by persistent, racially biased beliefs about pain thresholds (3). Transgender and gender-diverse patients face additional barriers including symptom dismissal and misattribution (4).

But the guideline, while thorough in describing the problem, does not address one of its most fundamental causes: the structure of the clinical encounter itself.

The average gynecologic visit in the United States lasts under 10-15 minutes. Wmen on Medicaid are likely seeing an ObGyn in less time. They need it much more. In that window, a clinician is expected to review the chief complaint, take a focused history, perform a physical examination, discuss results, and develop a plan. For a patient with possible endometriosis, this means screening for chronic pelvic pain, dysmenorrhea, dyspareunia, dyschezia, dysuria, gastrointestinal symptoms, fatigue, and infertility, while also assessing cycle length, pain severity, family history, and the impact on quality of life (1). The data show that the likelihood of endometriosis rises dramatically as the number of symptoms increases, from an odds ratio of 5.0 with a single symptom to 84.7 with seven or more symptoms (5).

No clinician can reliably capture this level of detail in a 15-minute visit. Not because they don’t care, but because the math doesn’t work.

What the New ACOG Guideline Gets Right, and Where It Falls Short

ACOG CPG No. 11 represents a meaningful shift in the approach to endometriosis diagnosis. The guideline formally recommends that a clinical diagnosis, made through symptom-based assessment, physical examination, or both, is sufficient to initiate empiric medical treatment (Strong Recommendation, Low-Quality Evidence) (1). This is an important departure from the historical reliance on surgical confirmation. For years, the message was: you need a laparoscopy to know for sure. That requirement delayed treatment, added surgical risk, and reinforced the idea that a woman’s reported symptoms were not enough.

The guideline also correctly identifies that transvaginal ultrasonography should be the initial imaging modality (Strong Recommendation, Moderate-Quality Evidence) and that biomarkers, including CA 125, are not reliable enough for diagnosis (Strong Recommendation, Low-Quality Evidence) (1). It provides a useful list of signs and symptoms suggestive of endometriosis and acknowledges the wide range of presentations, from classic dysmenorrhea to gastrointestinal symptoms, thoracic pain, and fatigue.

Where the guideline falls short is in providing clinicians with a practical tool to actually implement symptom-based diagnosis in the real world.

The guideline lists the symptoms. It describes what to look for on physical examination. It presents diagnostic accuracy data for imaging modalities in meticulous detail. But it does not offer a structured screening instrument that a patient could complete before or during her visit, one that systematically captures the multi-symptom pattern that the evidence shows is so critical to identifying endometriosis.

The guideline mentions that “various validated endometriosis symptom questionnaires are available” and may be useful adjuncts (1). But it does not recommend a specific one. It does not provide one. And in the absence of a practical screening tool built into the clinical workflow, the symptom-based diagnosis the guideline recommends will continue to depend on whether the clinician has enough time, training, and inclination to ask the right questions. For many patients, particularly those who have already internalized the message that their pain is normal, the questions will never be asked.

Screening Before the Visit: A Different Approach

This is why we built the ObGyn Intelligence Pelvic Pain & Period Screener, available free at tools.obmd.com.

It is, to our knowledge, the most comprehensive interactive pelvic pain and menstrual symptom screener available online. It is not a diagnostic tool. It does not replace a clinician.

What it does is something that the 15-minute visit cannot: it systematically walks a patient through every symptom domain relevant to endometriosis and other pelvic pain conditions, at the patient’s own pace, before she ever steps into the exam room.

The screener covers age, menstrual cycle characteristics, bleeding patterns, clotting and heaviness, pain severity, associated symptoms (dyspareunia, dyschezia, urinary symptoms, gastrointestinal symptoms, fatigue, mood changes), and their impact on daily life. It asks about the specific symptom combinations that the evidence shows increase the probability of endometriosis. It asks about symptoms that suggest other conditions, including adenomyosis, PCOS, fibroids, and PMDD, because women with pelvic pain deserve a complete evaluation, not a single-diagnosis screen.

At the end, the screener generates a personalized summary the patient can print, save, or bring to her appointment. Instead of trying to remember and articulate years of symptoms in 15 minutes, she walks in with a document that says: here is what I experience, here is how severe it is, and here is what the evidence says these symptoms may indicate.

The screener is free. It runs entirely in the browser. No data is stored, transmitted, or collected. Privacy by design.

Why This Matters

The new ACOG guideline tells clinicians to make a clinical diagnosis based on symptoms. Good. But if the patient cannot effectively communicate her symptoms in the time available, and the clinician cannot systematically screen for them, the symptom-based approach will underperform. The guideline creates the permission to diagnose without surgery. But it does not create the mechanism to capture the information needed for that diagnosis.

A structured pre-visit screener fills that gap. It gives voice to symptoms that patients have been told are normal. It captures the multi-symptom pattern, seven or more symptoms yielding an OR of 84.7 (5), that clinicians need to see. It reduces the dependence on visit length, clinician training, and implicit bias. And it puts the patient in the position she should always have been in: as the expert on her own body, arriving with her evidence organized and ready to be heard.

Four to eleven years is too long. The ACOG guideline moves in the right direction. But guidelines alone do not diagnose patients. Tools do. Questions do. Listening does.

The screener is live at tools.obmd.com. Share it with anyone who has been told their pain is normal. After you finish it save it or print it out to take with you to your doctor.

Doctors: Share it with your patients. They can do it at home and both of you save 20-30 minures of your valuable time.

References

1. Diagnosis of endometriosis. Clinical Practice Guideline No. 11. American College of Obstetricians and Gynecologists. Obstet Gynecol 2026;147:432–48.

2. Surrey E, Soliman AM, Trenz H, Blauer-Peterson C, Sluis A. Impact of endometriosis diagnostic delays on healthcare resource utilization and costs. Adv Ther 2020;37:1087–99.

3. Bougie O, Yap MI, Sikora L, Flaxman T, Singh S. Influence of race/ethnicity on prevalence and presentation of endometriosis: a systematic review and meta-analysis. BJOG 2019;126:1104–15.

4. Eder C, Roomaney R. Transgender and non-binary people’s perception of their healthcare in relation to endometriosis. Int J Transgend Health 2023;25:911–25.

5. Ballard KD, Seaman HE, de Vries CS, Wright JT. Can symptomatology help in the diagnosis of endometriosis? Findings from a national case-control study—part 1. BJOG 2008;115:1382–91.