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Although endometriosis affects as much as 10% of all women, it’s often missed by physicians. A recent Rutgers University study found that it took patients with this condition an average of about eight and a half years to get the diagnosis, and about three-quarters of them were misdiagnosed with another physical or mental health disorder first.
Endometriosis is a condition where the inside lining of the uterus (also known as the endometrium) grows outside the uterus and attaches to other pelvic organs, like your ovaries or fallopian tubes. Endometrial tissue can grow elsewhere, but it’s rare. Even though it’s moved, this tissue behaves like it does when it’s inside the uterus. It still responds to your body’s reproductive hormones and bleeds every time you have a period. This can irritate surrounding tissue and create scar tissue and adhesions that cause intense period pain. It can also lead to infertility.
This pain is often viewed as nothing more than “routine” menstrual cramps. Our own ROSE (Research OutSmarts Endometriosis) surveys here at Northwell have found that more than 70% of patients with endometriosis have had their pain dismissed by family, friends, employers, and, yes, physicians. Women may begin experiencing symptoms in their teens but are told by their mothers—who likely had endometriosis themselves—that it’s normal to need to stay home in bed for a few days during their periods. It’s also common for women to experience bowel issues, such as painful bowel movements, diarrhea and/or constipation, and bloating. As a result, they may be sent to a gastroenterologist and diagnosed with irritable bowel syndrome. Some women may even be referred to psychiatrists, who might brush off symptoms as depression.
Endometriosis is definitely tough to diagnose, as diagnosis typically requires an invasive procedure known as laparoscopy. A surgeon inserts a slender viewing instrument into your abdomen, looking for signs of endometrial tissue outside your uterus. But since early detection of endometriosis is key to managing symptoms and improving quality of life, we have made it a priority to understand the disease further. Since 2013, more than 5,100 women from across North America have joined our ROSE study and donated their menstrual discharge for research purposes. We’ve found significant differences in one type of cell found in these donations, called stromal fibroblast cells, among women with endometriosis. We hope that this can eventually be used as a fast, easy way to detect the disease in patients.
Until then, my best advice to all women is not to take “no” for an answer from their doctors. If you have severe menstrual pain—especially if it’s accompanied by pain during intercourse, severe bloating, pain during urination and defecation, and/or heavy periods—more specific tests, such as pelvic ultrasounds, MRIs, and laparoscopy should be done.
It’s also important that women get the proper treatment. Some physicians still recommend hysterectomies as a first-line option. In reality, this should only be a last resort, after patients have tried hormone therapies such as birth-control pills or aromatase inhibitors, followed by laparoscopic surgery to remove the lesions. Look for a specialist trained in treating endometriosis who takes your symptoms seriously and works with you to develop a treatment plan. This will go a long way toward managing your endo pain and making it more bearable.