Endometriosis: Diagnosing the debilitating condition

In remarks this month to members of Congress and their staffs, Dr. Wendaline VanBuren, a Mayo Clinic radiologist who specializes in gynecologic imaging, discussed the importance of research in improving early detection and diagnoses of endometriosis, including through medical imaging.

Endometriosis is often a painful disorder in which tissue similar to the tissue that normally lines the inside of the uterus grows outside the uterus. It's estimated that 1 in 10 women of reproductive age have endometriosis. Despite this serious condition affecting millions of women, it's notoriously difficult to diagnose.

Endometriosis symptoms, like pain, can be hard to pinpoint, identify or diagnose accurately because of their similarity to other conditions. Dr. VanBuren says high-quality, dedicated imaging for endometriosis is an excellent tool for diagnostic evaluation.

"It's part of the disease complexity," says Dr. VanBuren. "I think one of the most controversial issues that exists with endometriosis is the diagnosis of it. And that has to do with the cell types that are involved."

More than one way to diagnose

Dr. VanBuren says different patterns of endometriosis mean there's more than one way to diagnose the disease.

"On the lining of the pelvis, there's a surface called the peritoneum, which I think of almost like Saran wrap, a thin layer that kind of covers all those pelvic structures, the ovaries, the uterus, the bowel, and then almost like a powdered sugar coating on that. That's called superficial disease—so extremely tiny deposits," she says.

Although it can sometimes be seen on imaging, superficial disease requires laparoscopic surgery for definitive diagnosis.

If the endometriosis is growing into organs in the pelvis or abdomen, that's called deep disease, and surgery may not be needed for diagnosis.

"Imaging is really good at identifying that type of disease, so either a dedicated MRI for endometriosis or an ultrasound," says Dr. VanBuren.

The disconnect between disease presentation and symptoms

Processes in the body, such as hormones and inflammation, can affect the appearance of endometriosis differently based on location and cell type.

"And the patient presentation may not necessarily reflect, in terms of the symptoms, where those cells are, what they're doing or the disease severity," she says. In other words, even if a person has symptoms of endometriosis, such as pain, those symptoms might not point exactly to where the problem is, what's causing it or how severe it is.

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