Why Does Endometriosis Take So Long to Diagnose?

"I finally feel heard." This is what many of Dr. Alyssa Small Layne’s patients say after struggling for years with undiagnosed endometriosis.

Dr. Alyssa Small Layne, MD, FACOG, is a minimally invasive gynecologic surgeon at Howard University Hospital in Washington, DC, specializing in robotics, laparoscopic, and vaginal surgery with expertise in treating uterine fibroids, endometriosis, and fertility preservation. 

Her mission is to provide high-quality care while advocating for women who have been overlooked in the medical system. “I truly believe that all women deserve excellent quality care,” she says. 

Why does endometriosis take so long to diagnose? In this interview, Dr. Small Layne breaks down the barriers to diagnosis, the role of specialist care, and what women can do to advocate for themselves.

Why is endometriosis often misdiagnosed or overlooked?

Dr. Layne: That is a good question, and it's something we have been talking about for far too long. Many people, including both women and medical providers, don’t know enough about endometriosis. Women may not realize their symptoms could be caused by endometriosis, and medical providers may not be fully familiar with its symptoms or how to diagnose it.

"Surprisingly, general OB-GYN training does not include comprehensive education on endometriosis."

This lack of understanding often leads to symptoms being dismissed with phrases like, "Periods are supposed to be painful" or "Just take ibuprofen." Many women assume they must endure pain because their family members did, without realizing that their symptoms warrant further evaluation.

Can endometriosis symptoms vary widely?

Dr. Layne: When people think of endometriosis, they often associate it only with severe pain. However, not everyone with endometriosis experiences extreme pain. Some women may have mild cramping, while others may have no symptoms at all—even in cases of advanced stage three or four endometriosis. Because symptoms vary widely, many cases go undiagnosed until later investigations for unrelated health concerns.

Why is it difficult to find a specialist for endometriosis?

Dr. Alyssa Layne: This ties back to awareness. If a medical provider believes they can treat a patient using standard methods they’re accustomed to, they may overlook other possibilities. Surprisingly, general OB-GYN training does not include comprehensive education on endometriosis. 

A doctor can complete OB-GYN residency and become a fully practicing physician without ever performing an endometriosis surgery. This means many OB-GYNs lack the training to diagnose or manage endometriosis effectively, leading to missed diagnoses and delayed referrals to specialists.

Is surgery the only way to diagnose endometriosis?

Dr. Layne: Endometriosis is difficult to diagnose because symptoms range from debilitating pain to no symptoms at all. Traditionally, the “gold standard” for diagnosis has been laparoscopic surgery, but many specialists now argue that diagnosis should not require surgery. Endometriosis can be diagnosed through a combination of history, physical exam, and imaging such as ultrasound or MRI.

What does a physical exam for endometriosis entail?

Dr. Layne: The physical exam is fairly comprehensive and depends on where a patient is experiencing symptoms. A pelvic exam is typically done to look for telltale signs of endometriosis. In advanced or rare cases, endometriosis can even be visible during an exam. For example, if a patient has had a hysterectomy and we do a speculum exam, we might see a mass inside the vagina indicative of endometriosis, which would require a biopsy for confirmation.

I've also had cases where a patient comes in for pelvic pain and mentions seeing a general surgeon for a suspected hernia. When they describe that their hernia seems to bleed or cause pain in a cyclical pattern, we may find a mass at their belly button caused by endometriosis growing there. These are not common sites, but they highlight that endometriosis can sometimes be found during an exam. Imaging with ultrasound or MRI is also valuable in identifying the condition.

Can endometriosis be diagnosed with imaging alone, or do you need a history and physical exam?

Dr. Layne: I was trained in a traditional medical setting, and I always start with a history and physical exam. I can’t imagine diagnosing someone without it.

That being said, ultrasound and MRI can be used to diagnose endometriosis. However, in the U.S., ultrasound is highly dependent on the skill of the person operating the probe and the specific instructions they receive for the scan.

A standard ultrasound may not detect endometriosis unless it is in the form of an endometrioma (a cyst within the ovary). Specialized ultrasonographers, trained to recognize more subtle signs, can detect endometriosis more effectively. The same applies to MRI—it needs to be read by a radiologist familiar with endometriosis.

Are radiologists typically trained to identify endometriosis on imaging?

Dr. Layne: Not necessarily, but they can be. In the U.S., MRI is typically the imaging method of choice for detecting endometriosis, and some radiologists are very skilled at identifying it. In other countries where MRIs are less accessible due to cost, doctors rely on highly specialized ultrasounds. These ultrasounds can be just as effective as MRIs when performed by trained professionals.

Some endometriosis centers in the U.S. now offer comprehensive evaluations, including in-office ultrasounds specifically designed to detect endometriosis. However, many women and even their OB-GYNs are unaware that these centers exist, which contributes to the long diagnostic delay—often averaging 10 to 11 years.

How can women advocate for themselves if they suspect endometriosis but aren't being heard?

Dr. Layne: This is a common and frustrating experience. If you think you have endometriosis, make a dedicated appointment just for your symptoms rather than bringing it up during an annual exam. Those visits focus on preventive care, so a separate visit gives your doctor more time to evaluate your concerns.

"If you're experiencing symptoms, they are valid, and you deserve answers."

Tracking your symptoms is also important. Keep a log of pain, nausea, bloating, diarrhea, shoulder pain, or other unusual symptoms, and note when they occur. Patterns—like symptoms worsening around your period—can help your doctor make a more informed assessment.

If insurance denies an MRI or further testing, documentation is key. When doctors have clear, recorded symptoms, they can build a stronger case for coverage. It’s much harder for insurance companies to deny a test when there is medical evidence supporting the need for it.

What should women know about endometriosis and getting diagnosed?

Dr. Layne: First, endometriosis is real. So are other conditions that cause pelvic pain. If you're experiencing symptoms, they are valid, and you deserve answers.

 "If something feels wrong, trust yourself and continue advocating until you get the care you need."

Second, there are specialists who can help. If your current doctor isn’t taking your concerns seriously, ask for a referral to an endometriosis specialist. Some specialists accept self-referrals, so don’t be afraid to seek a second opinion. If something feels wrong, trust yourself and continue advocating until you get the care you need.