Endometriosis awareness is on the rise, but the condition is still hard to detect

UCLA Health OB-GYN Dr. Daniel Ginn explains the disorder and its challenges

More than 6 million women in the United States have endometriosis – a disorder that occurs when uterine lining tissue grows outside of the uterus. Though symptoms and severity can vary from patient to patient, some telltale signs include painful periods, intercourse, or urination, or excessive bleeding during or in between periods.

Although endometriosis awareness has been on the rise, according to UCLA Health OB/GYN Daniel Ginn, DO, it still takes seven to eight years to diagnose. One reason is that a woman may not know the distinction between a normal period and one that isn’t normal.

“Painful periods can be mistaken as ‘normal’ as told by mom, doctor or the internet. Or a patient just thinks it’s normal, especially if patients have painful periods from the get-go,” which results in a woman never consulting a doctor, he says.

A woman may also have a high tolerance for painful periods and may never seek treatment.

Diagnosing the condition can also be challenging for a doctor. Ultrasounds are occasionally used to detect endometrial lesions outside of the uterus, but the lesions are not always captured in the images.

“A lot of doctors are not recognizing the limits of what imaging can tell us about a patient's disease and so they think they're getting a normal ultrasound and they really aren't,” Dr. Ginn says.

An official diagnosis requires a laparoscopy – a procedure that uses a camera to identify lesions.

Physician training with a focus on endometriosis

Though ultrasounds don’t always capture endometrial lesions, Dr. Ginn says UCLA Health has endometriosis screening protocols in place when conducting an ultrasound.

“We are definitely ahead of the curve in the way that we are looking at diagnostic imaging to help rule endometriosis in or out,” he says.

The American Association of Gynecologic Laparoscopists administers a fellowship on minimally invasive surgery. Dr. Ginn, a former fellow, said the training's focus on endometriosis is producing more doctors that are experts in the disorder. The fellows work at hospitals across the nation, including UCLA Health.

How to better diagnose endometriosis

Dr. Ginn emphasized that gynecologists need to incorporate questions about period pain during a routine exam to better screen for endometriosis.

He also recommends that doctors use their institutional resources and escalate cases to an endometriosis specialist if needed. If symptoms do not subside after trying non-steroidal anti-inflammatory drugs (NSAIDs) or birth control – which lessens the growth of the tissue – an endometrial lesion can be cut out during surgery, for example.

Dr. Ginn also stressed that if a woman has painful periods that are disrupting her life, she needs to speak to her doctor to manage symptoms. If medication isn’t quelling the pain, Dr. Ginn said, women need to advocate for themselves to see a specialist.

“If you try some medical management and you're not improving and get an ultrasound that says that everything is quote-unquote normal and your symptoms are still not getting better, don't accept that, ask for a referral to a specialist,” he said.

Learn more about endometriosis.

Kelsie Sandoval is the author of this article.