What Are We Still Getting Wrong?
By Carlos H. Silva, MD, FCCP
The release of the updated ACOG guidance on endometriosis diagnosis has sparked significant discussion across both the medical community and patient advocacy groups.
That conversation is necessary.
But the real question is not whether the language in the guidelines has improved.
The real question is this:
Will anything actually change for patients?
Because for millions of women living with endometriosis, the experience of navigating the healthcare system has remained remarkably consistent for decades.
Pain is reported.
Symptoms are minimized.
Hormonal therapy is prescribed.
Time passes.
And diagnosis often arrives years later — sometimes decades later.
My wife lived that reality for twenty years.
As a physician, I understand the complexity of diagnosing chronic disease. But watching that diagnostic delay unfold from the inside made something painfully clear:
Endometriosis is not difficult to recognize because the disease is subtle.
It is difficult to recognize because the system has never been built to recognize it.
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The System Still Doesn’t Have a Real Diagnostic Pathway
ACOG’s update suggests clinicians now have the tools they need to diagnose endometriosis.
That statement sounds reassuring.
But it does not reflect the clinical reality most patients experience.
In practice, the diagnostic pathway for endometriosis remains fragmented, inconsistent, and largely dependent on persistence from the patient.
We still lack standardized imaging protocols across most healthcare systems.
We still do not routinely train ultrasound technologists or interpreting physicians to identify deep infiltrating endometriosis.
And we still rely heavily on symptom suppression rather than diagnostic certainty.
The result is a system that does not identify disease early.
It manages symptoms until the disease becomes impossible to ignore.
That is not early detection.
That is delayed recognition.
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Imaging Is Not the Safety Net Many Believe It Is
Transvaginal ultrasound can be a valuable tool when performed by clinicians trained to evaluate deep infiltrating disease.
But outside of specialized centers, that expertise is uncommon.
Without specialized training and protocols, imaging frequently appears “normal” even in patients with significant disease.
And when imaging is normal, the next step too often becomes dismissal.
Patients are told their pain is stress.
Or anxiety.
Or simply “bad periods.”
The absence of visible disease becomes the justification for ignoring the symptoms.
For many patients, this is the exact moment their diagnostic journey stalls.
And it can stall for years.
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The Biggest Missing Piece: Referral Pathways
Even when endometriosis is suspected, another major problem emerges.
Patients rarely get referred to the right surgeons.
Endometriosis is a complex surgical disease. Yet the healthcare system often treats it as though it can be universally managed within general OB-GYN practice.
That assumption has consequences.
Many patients undergo procedures labeled as “diagnostic laparoscopies” that confirm the presence of disease but do little to meaningfully treat it. Others undergo superficial procedures that leave large portions of disease behind.
Surgery for endometriosis should not exist simply to confirm that the disease is present.
If surgery is performed, it should be therapeutic — meaning the disease is identified and properly treated during the same procedure.
Too often, patients undergo multiple surgeries that fail to fully address the underlying pathology. Each additional operation increases risk, prolongs suffering, and delays meaningful recovery.
Without clear referral pathways directing patients toward surgeons trained in excision of complex disease, updated guidelines risk preserving the same broken process that has defined endometriosis care for decades.
Patients deserve more than confirmation that the disease exists.
They deserve surgeons trained to treat it.
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Delayed Diagnosis Is Not Harmless
In the ICU, delayed diagnosis is something we confront constantly.
When disease is recognized late, the consequences are predictable.
Disease progresses.
Treatment becomes more invasive.
Outcomes worsen.
Endometriosis follows the same pattern.
It is not a mild condition.
It can affect the bowel, bladder, nerves, diaphragm, and multiple pelvic organs. It can profoundly impact fertility, physical functioning, and quality of life.
Yet patients are still told, in one form or another:
“Give it time.”
For many women, “give it time” becomes ten years.
Or fifteen.
Or twenty.
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The Question Medicine Needs to Ask Itself
The updated guidance is a step forward in acknowledging the complexity of endometriosis.
But acknowledging complexity is not the same thing as solving it.
The real question medicine must ask itself is not whether we are writing better guidelines.
It is whether the system is changing fast enough to prevent the next generation of patients from repeating the same diagnostic journey.
Because if women are still waiting a decade for answers, we have not fixed the problem.
We have only reworded it.
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What Patients Actually Need
Patients deserve diagnostic accuracy.
They deserve specialty-level imaging when appropriate.
They deserve access to surgeons trained to manage complex disease.
And they deserve a healthcare system that recognizes their symptoms before years of damage accumulate.
Most importantly, they deserve a care pathway that does not depend on persistence, privilege, or timing.
Endometriosis patients should not have to fight the healthcare system simply to be taken seriously.
Progress in medicine is always welcome.
But progress must ultimately be measured not by the language written into a guideline, but by whether patients experience faster diagnosis, better treatment, and meaningful relief.
Until that happens, the work is not finished.
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Carlos H. Silva, MD, FCCP
Board Certified in Internal Medicine and Critical Care Medicine
Chief Medical Officer, IMTELEDOCTOR
