5 Things You Didn't Know About Endometriosis

woman with endometriosis

Suffer through killer cramps and heavy periods? Don't assume that's normal. These are both classic symptoms of endometriosis.

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We've filled you in before on this chronic disease that plagues 1 out of 10 women. It's caused when the tissue that lines the uterus begins growing outside the uterus. But here are 5 things about this insidious disease that you probably didn't know -- but really should.

1. Not many people know what endometriosis is. That's because it's a disease associated with menstruation, explains Tamer Seckin, MD, a gynecologic surgeon, cofounder of the Endometriosis Fund of America, and author of The Doctor Will See You Now: Recognizing and Treating Endometriosis.

"In general, there's still a lot of societal stigma concerning periods," Dr. Seckin explains. "When a woman does speak about her 'killer' cramps, a characteristic symptom of endometriosis, her symptoms are often dismissed. She's told that her pain is not real, that it's a 'girl problem' or a 'woman thing.'"

The result? Instead of insisting that something's not right and trying to find a cause for our pain, we shut up. It must be all in our head, right?

2. Endometriosis goes beyond painful periods. The condition actually causes a number of serious health issues, says Dr. Seckin, including "infertility, pain with bowel movements, pain with sex, and even an increased risk for ovarian cancer."

There's even research which links endometriosis to an increased risk for heart disease.

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3. A diagnosis may be harder than you think. Dr. Seckin says many of his patients were misdiagnosed by other doctors -- multiple times. (One woman suffered for 15 years before seeing Dr. Seckin, who was able to give her a correct diagnosis.)

"The problem concerns very well-intentioned doctors who are unfortunately NOT experts in diagnosing or treating endometriosis," says Dr. Seckin. "These gynecologists are generalists, and they are not trained to recognize endometriosis in its early stages and attribute severe menstrual pain to simply being within normal limits."

Or, because endometriosis symptoms mimic other conditions, women can be diagnosed with a litany of totally different problems including irritable bowel syndrome, fibroids, colon or ovarian cancer, or pelvic inflammatory disease.

Brace yourself, but on average, it takes 10 years to get the RIGHT diagnosis. "And by then," notes Dr. Seckin, "the disease has spread considerably."

4. Endometriosis can affect your personality. Although endometriosis can cause debilitating pain, "when you don't look sick to your friends or coworkers ... it becomes a problem," Dr. Seckin notes.

Women who suffer from this chronic condition commonly experience a range of emotions "from feeling guilty, depressed, and anxious to feeling self-conscious and isolated," says Dr. Seckin. "And why not? Everyone around them is questioning their pain or passing judgment on something they don't understand."

5. Finding the right doctor to help you is crucial. If you think you have endometrosis, you need to see an endometriosis specialist. And not just anyone will do.

Does this doctor have experience diagnosing and treating the disease? Is he or she willing to receive input from you? Is he or she willing to explain surgical procedures and treatment options? Does he or she ask detailed questions about your sex life, bowel movements, and quality of life?

"These all demonstrate a doctor's transparency and willingness to treat you at a competent level," Dr. Seckin explains.

And never, he adds, rule out a second -- or even a third -- opinion.

"I always say," Dr. Seckin notes, "'Trust your doctor, but trust yourself and your pain more.'"

 

Image via Irina Bg/Shutterstock

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