How physicians can better diagnose endometriosis

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Endometriosis is a baffling inflammatory disorder, often compared to autoimmune disease, that affects 176 million women worldwide. 

The average woman goes ten years in pain and discomfort before she ever gets a diagnosis, according to Iris Orbuch, MD, director of the Advanced Gynecologic Laparoscopy Center of Los Angeles and New York.

“I say it’s hidden in plain sight,” Orbuch says.

Since the symptoms range across a breadth of specialty areas, with women exhibiting one or multiple symptoms, endometriosis is often missed, Orbuch explains. These symptoms include: painful periods, pain during the monthly cycle and pain not confined to the monthly cycle, painful sex, constipation, bloating, painful bowel movements, urinary frequency or urgency and infertility, and back and side pain, among others.

The symptoms of endometriosis are caused when cells similar to those found in the lining of the uterus are found outside of the uterus causing inflammation and scarring. Orbuch says endometriosis implants can be found anywhere in the body, but when found in the pelvis, they often congregate behind the cervix, behind the vagina and in front of the rectum, around what she calls the “uterosacral ligament” which explains why so many women have gastrointestinal (GI) symptoms.

By asking three simple questions, Orbuch says physicians can help diagnose a woman with endometriosis:

• Do you have painful periods?

• Do you have pelvic pain any time throughout the month not confined to your period?

• Do you have gastrointestinal symptoms?

The last question is important. Orbuch says, “Ninety percent of endometriosis patients present with intestinal symptoms. If they have pelvic pain, painful periods and GI symptoms, it’s likely endometriosis until proven otherwise.”

Additionally, in a vaginal exam, Orbuch says she can feel the uterosacral ligaments pulling the cervix to one side, and when she pushes gently, “I feel a fullness or nodularity and that usually reproduces some of the pain.”

By the time most of Orbuch’s patients come to her, they are desperate, having seen an endocrinologist or rheumatologist, a gastroenterologist, an internist, a gynecologist and even a psychiatrist without relief.

The latter is part of a larger problem in which women’s pain is often not believed by physicians, but endometriosis is especially tricky because it doesn’t show up any traditional imaging such as ultrasounds, or CT scans, Orbuch says. 

“Women are so anxious and depressed because they’re in such pain,” Orbuch says. “It is so devastating to see years lost and lives not lived to the fullest due to endometriosis.”

Endometriosis often impairs women’s ability to work, to socialize and to have regular sexual activity.

There is no medical cure for the disorder, there are only treatments that help to treat symptoms, ranging from birth control pills to the most effective method: surgical excision of endometriosis. Surgery is also required in order to diagnose endometriosis for certain. 

This surgery, however, Orbuch says, should only be done by a specialist who is very skilled in it. Most OB-GYNs are taught what she calls the wrong treatment for endometriosis, which is known as burning, or coagulation or fulguration. “They just get a superficial removal of the tissue but it leaves the bulk behind and that burning causes more scarring.” 

Moreover, Orbuch says that pediatricians also need to be better educated on endometriosis, because, “Seventy percent of teen girls with painful periods have endometriosis.”

Diagnosing them at an early age could prevent them decades of agony and unanswered questions.

“Not all endometriosis patients present the same way. That’s also what causes the misdiagnosis roulette,” Orbuch says. “You have to know all the symptoms, but if primary care knew the GI manifestations, these women could be saved a lifetime of problems.”