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Why Doctors Miss the Symptoms of Endometriosis

New research reveals how long the disorder can persist, the damage it can do and how best to treat it

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Madeleine Rudin, 66, of Greenwich, Connecticut, started having “horrendous” stomach cramps in her 20s that left her bloated and in pain for days at a time. The symptoms continued — for decades — as doctors treated her, unsuccessfully, for issues such as irritable bowel syndrome or a spastic colon. Never knowing how she might feel each morning “made my world very, very small,” she says.

At age 63 Rudin finally received the correct diagnosis: endometriosis, a painful inflammatory disorder that causes tissue cells normally lining the uterus to grow outside it.

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A few months later, her surgeon excised 28 lesions on her bowel, uterus and the membrane covering her abdominal organs. After her recovery, Rudin says that living without pain changed her life, allowing her the freedom of simple pleasures like making social plans, and keeping them.

While Rudin's diagnosis was particularly long in coming, it generally takes from seven to 10 years for a woman to be accurately diagnosed with endometriosis, says Jessica Shepherd, an obstetrician and gynecologist at Baylor University Medical Center in Dallas. According to recent research, Rudin would be one of roughly 5 percent of women in whom the condition endures past reproductive age. About 1 in 10 women overall have the disorder.

"We're just beginning to understand endometriosis, in part, because many women have not been definitively diagnosed,” says Christine Metz, professor at the Feinstein Institutes for Medical Research in Manhasset, New York, who notes that as in Rudin's case, it's often mistaken for bowel problems and other digestive disorders.

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The toll of waiting for a diagnosis

That delay costs women years of pain and discomfort, can affect fertility and can increase their risk of other health problems: In the most aggressive cases, rogue tissue can migrate to places like the lungs, where it causes difficulty breathing. The emotional toll of endometriosis is also high. Studies have found that the constant pelvic pain and diminished quality of life puts women at risk for depression and anxiety.

Part of the lag in diagnosis has to do with the slow pace of research into the disorder (which you're seven times more likely to have if your mother suffered from it.) Until recently, very few people around the world were studying endometriosis, says Metz, who is part of a team of researchers investigating the disorder in the Research OutSmarts Endometriosis (ROSE) study. Through it, researchers at the Feinstein Institutes hope to find a better way to diagnose endometriosis beyond imaging and/or invasive laparoscopic surgery. One approach potentially is to study menstrual effluent, or a woman's monthly discharge, for clues.

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The link to heart disease and cancer

New research points to another need for swifter diagnosis: Women who have had endometriosis, it was recently found, are at risk for heart disease, osteoporosis and ovarian and endometrial cancer.

In January, a Taiwanese study published in the Journal of the Formosan Medical Association, for instance, found that women with endometriosis had about a 20 percent increased risk of major adverse cardiovascular or cerebrovascular events.

Another study found that the risk of cardiac events is highest in women treated for endometriosis when they were 40 years of age or younger. Researchers found that these women had a disproportionate risk of heart attack, chest pain, angina and treatment for blocked arteries compared with women without endometriosis. The risk was highest among women who also had their uterus and/or ovaries removed to get rid of the lesions.

Weighing current treatments for endometriosis

First-line therapy for endometriosis is an oral contraceptive. It has few long-term risks but isn't effective in about one-third of cases, says Hugh Taylor, chair of the department of obstetrics, gynecology and reproductive sciences at Yale School of Medicine in New Haven, Connecticut. That's why, in the past, doctors have used medications called GnRH agonists to reduce estrogen — a hormone that stimulates the rogue tissues to grow — to low, postmenopausal levels. However, these medications often have side effects such as hot flashes, fatigue, sleep disturbances and weight gain. When used long term, doctors now know the drugs can lower bone density and increase the risk of osteoporosis, a condition where your bones become weak and brittle. The decrease in bone density is typically about 4 to 6 percent at the end of a six-month course, but most of the bone loss builds back within one to two years after stopping this treatment, says JoAnn Pinkerton, M.D., director of Midlife Health at the University of Virginia and executive director emeritus of the North American Menopause Society. Weight-bearing exercise and calcium and vitamin D supplements can also help limit the loss, she says.

Endometriosis can also put you at a twofold greater risk of ovarian cancer. 

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