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The Personal, Painful Ordeal of Women with Endometriosis

The Personal, Painful Ordeal of Women with Endometriosis

For Lindsay Murphy, a laundry list of symptoms she’d had for years turned out to have a one-word diagnosis. Endometriosis. Patients and a handful of doctors are demanding better education, diagnosis, and treatment for this common condition.

Lindsay Murphy, a 36-year-old San Francisco native, sensed something was wrong with her, but none of the doctors she saw found anything.

Her periods were grueling. Birth control pills seemed to help, but she still wasn’t quite right.

One day, she passed out with no explanation. Another, she woke up in a pool of blood. A battery of tests didn’t lead to a diagnosis.

In May 2011, she started coughing up blood. She had just moved to the Lake Tahoe area to work as a nanny, and she and others first blamed the elevation. Then there was blood in her stool.

In August, as she loaded clothes into the washer at her apartment, Murphy collapsed and was taken to the hospital.

Barely conscious, Murphy remembers medical staff talking heatedly about her low blood oxygen levels before wheeling her into surgery. She would remain on the table for more than nine hours.

When she came to, the surgeon told her she had the worst case of endometriosis he’d ever seen.

It turns out, he hadn’t even seen all of it.

What Is Endometriosis?

Most people think of endometriosis more or less as a synonym for bad menstrual cramps, but the condition is more serious than that. It involves tissue from the uterine lining implanting itself outside the uterus.

Basically, endometriosis is a plumbing problem. Instead of being flushed during menstruation, the uterine tissue backs up into other parts of the body. Wherever it lands, it continues to respond to the hormones that control menstruation. The result is pain and bleeding wherever there’s endometrial tissue.

The condition affects 1 in 10 women.

“Endometriosis reaches far beyond the uterus by sneaking up the tubes or through the blood or lymph systems. It goes other places like cancer, and because it’s the body’s own material, it’s not rejected,” said Dr. Tamer Seckin, a gynecologic surgeon who co-founded the Endometriosis Foundation of America.

 
People are committing suicide because of this, because it’s not recognized and there are no good treatments and people get blown off.
 
Dr. Peter Gregersen, Feinstein Institute for Medical Research

In most patients, the endometrial tissue spreads no further than the abdomen. The tissue can implant itself in the bowel, causing gastrointestinal symptoms. It may sit atop the cervix, making sexual intercourse excruciating. Almost half of female infertility cases are associated with endometriosis.

The scientific literature documents more severe cases, like Murphy’s, where the tissue extends beyond the abdominal cavity, including the lungs, throat, urethra, bladder, kidney, liver, and sciatic nerve.

Doctors often dismiss patients as wimps who can’t handle the pain of a normal period. In fact, as many as 87 percent of women who complain of chronic pelvic pain have endometriosis. They wait, on average, a decade to be properly diagnosed.

“People are committing suicide because of this, because it’s not recognized and there are no good treatments and people get blown off,” said Dr. Peter Gregersen, a geneticist with the Feinstein Institute for Medical Research in Long Island who is researching endometriosis.

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