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.
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 as wimps women who can’t handle period pain. In fact, as many as 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.
Endometriosis Lurks in Plain Sight
Part of the trouble with endometriosis is there’s no good diagnostic test. To formally diagnose endometriosis, doctors need a tissue biopsy, which requires laparoscopic surgery. The risks and costs of surgery mean few women get it.
But a basic pelvic exam can give doctors a pretty good idea of what they’re dealing with, according to Seckin. These women are “extremely tender to the touch” when doctors do an ultrasound or pelvic exam, he said.
By the time Murphy first heard the word “endometriosis,” the disease had done permanent damage. Her bladder and lungs needed to be repaired. She would also require a radical hysterectomy.
Early diagnosis is the best weapon modern medicine has to prevent the more serious symptoms of the condition.
Fortunately, the same oral contraceptives that doctors prescribe to treat a variety of minor menstrual problems are the proper first line treatment for endometriosis. The hormones make menstruation lighter, alleviating pain and minimizing the amount of uterine lining that can cause problems.
“You don’t ovulate, so you don’t damage your ovaries constantly,” said Dr. Jill Rabin, a gynecologist at Long Island Jewish Medical Center. Symptoms also ease when ovulation is stopped.
But birth control pills don’t necessarily stop the harmful spread of endometrial tissue. Doctors who suspect endometriosis should monitor for symptoms and scan for masses.
When women continue to have pain or if they continue to develop lesions, surgery may be needed. But the surgery has to get all of the tissue or patients will continue to have problems.
“The pelvis is a place where a baby can find life. It’s rich with nerve tissue, it’s rich with blood vessels,” Seckin said. “It’s not an easy place to reach" in surgery.
As a result, many women end up with stents to restore proper bladder and urethra function. Many surgeons continue to cauterize the lesions in endometriosis, though experts told Healthline excision is more effective.
There’s no definitive test to determine if tissue is a mass of endometriotic tissue or not, doctors told Healthline. Murphy’s Lake Tahoe surgeons missed lesions in her lungs, requiring her to seek further care with Dr. Camran Nezhat, a Silicon Valley surgeon who specializes in endometriosis.
Things would not have gone so far if Murphy had been diagnosed sooner.
“There’s clearly a need for treatments and there’s a need for diagnosis,” Gregersen said.
Inherited Biases Slow Care
Some of the roadblocks to faster care for women with endometriosis are the hard-to-budge cultural kind.
Most women with endometriosis develop it early in their reproductive years. Many, including Murphy, are told by their mothers to expect severe pain with their periods. Doctors say extreme pain that doesn’t respond to typical over-the-counter remedies is not normal.
“Culturally, there is this aversion, distancing, even in families, when issues occur with periods,” Seckin said. “There’s a tendency to underplay it.”
It’s likely that the mothers who describe extremely painful periods as normal suffer from endometriosis themselves. The condition is partially inherited.
“There’s a known genetic component,” Gregersen said. “It runs in families. But as with all genetically complex diseases, it’s not always clear which genes are causing it.”
Young women are also less likely to go to a gynecologist, who’s best equipped to correctly identify endometriosis.
“The first doctor they’ll see is a GP or pediatrician, and many don’t know what endometriosis is,” Seckin said. “In the physician community, they’re not any more informed than the general public. Seriously, you wouldn’t believe it.”
The Endometriosis Foundation of America has gone to schools with a lesson on endometriosis, reaching more than 7,000 Long Island high school students, to try to teach young women to recognize abnormally difficult periods.
“Education is really key with this whole thing,” said Rabin. “The earlier you get to people and explain to them what’s normal and what might be outside the range of normal, the better.”
But doctors need to unlearn some outmoded ideas about menstruation, too, according to Seckin.
“‘Women are crazy,'" he said, summing up inherited biases. "These crazy periods make women crazy.” He pointed to the long medical history of seeing the uterus as almost a sickness unto itself. The common diagnosis of “hysteria” in the late 1880s is the best-recognized example.
Finding Answers in Blood
Gregersen, who has recently shifted his focus from autoimmune conditions to endometriosis, sees an upside in all of the old taboo about menstruation.
When people have averted their eyes to a condition for so long, there are some rather obvious places to start to look for answers.
“What struck me as someone coming in from the outside from complete ignorance — I mean I have an M.D. but other than that, I really didn’t know anything about this condition — is that there’s very little understanding of exactly what’s in menstrual blood,” he said.
Many more women lose menstrual blood into the abdominal cavity than have endometriosis. There may be something about some women’s menstrual blood that makes it more likely to implant itself.
But Gregersen’s work on menstruation could also yield more immediate results.
There’s evidence that when primates develop endometriosis, their menstrual blood changes.
“The normal endometrial tissue that’s in the uterine lining, that tissue changes by virtue of having endometriosis in the abdominal cavity,” Gregersen said.
Gregersen is currently working with Seckin to identify differences between the menstrual blood of women who have endometriosis and those who don’t, using newly available genetic techniques. Their study is recruiting patients.
The payoff would be a straightforward diagnostic test. A test isn’t the same as a cure, but by identifying the disease much earlier, researchers would at least learn more about how endometriosis progresses.
And even if the treatment options remain limited, at least women would be spared the experience of having dramatic symptoms that doctors tell them are nothing.
“When you see a patient with relief of pain, the joy of the doctor is incredible,” Seckin said, explaining why he has dedicated his career to endometriosis. “These women have been dismissed, misdiagnosed, and mistreated. They start feeling good and they say ‘I wasn’t crazy, doctor.’”