Yet federal funding has largely ignored endometriosis, leaving research stymied, misunderstanding rampant in the medical community and patients with huge bills not covered by insurance.

The sheer scale of the disease puts its number of sufferers on par with well-known “quality of life” maladies such as diabetes, which impacts roughly 13.4 million women according to US Centers for Disease Control figures.

Many patients and specialists contend that the lack of research funding and public knowledge of endometriosis is because of who and what it impacts: almost exclusively women, largely during menstruation.

“I went 10 years, through 22 surgeries, before I got help,” said Heather C Guidone, the surgical program director at the Center for Endometriosis Care in Atlanta. Through those 10 years, and since hearing the stories of other patients, she said doctors often tell women, “‘Periods are supposed to hurt. It’s a woman’s lot in life to suffer.’”

Where diabetes received more than $1bn in funding each year from the National Institutes of Health (NIH) last year, endometriosis received just $7m. That is down from $14m in 2011.

To put that into perspective, for each person believed to have diabetes in the United States, the NIH spends $35.66 annually. For each woman with endometriosis, the NIH spends $0.92.

“Personally, I got very fed up with my pain continuing, and then getting worse, I started to have back and leg pain with my bladder and my bowels, I got to the point where I really wasn’t functioning anymore. I lost my job,” said Jill Fuersich, co-founder of the support group Endo Warriors.

Instead, reports indicate American women suffer for nearly 12 years on average before they are diagnosed with the disease. The delay is similar to others around the world, who live with the disease for up to 10 years without a proper diagnosis. Patients frequently report that doctors don’t believe they are in pain.

Today, management of the disease has barely advanced from a decade ago, and a flawed 100-year-old theory used to explain the disease’s origin remains widely accepted.

“It’s obviously underfunded,” said Tommaso Falcone, a doctor who helped write recent practice recommendations for endometriosis for the American College of Obstetricians and Gynecologists. “If we look at what I’m doing today in the management of endometriosis for women, it’s not all that different than what I did 10 years ago, so and that’s what’s the pathetic part.”

He said a common refrain is, “There’s nothing new in endometriosis,” Falcone said.

Endometriosis causes tissue similar to the lining of the uterus to grow outside of the womb. Without a way to drain each month, as the uterine lining does during menstruation, the cells form lesions, scar tissue, cysts and can lock together the normally free-floating organs of the pelvis.

The illness has a capricious relationship to pain that leaves some women asymptomatic until they discover they can’t have children. Yet other women are in agony from their first period to menopause and are dosed with heavy painkillers, homeschooled or unable to hold a job. The disease could be responsible for up to half of unexplained infertility and 87% of chronic pelvic pain in women.

Other women have ovaries, uterus and pieces of pelvic tissue removed in an attempt to stop the pain – treatments that don’t always eliminate the disease. All the while, women say they are often told by doctors that the pain is in their head.


The estimate of 7.6 million, from the World Endometriosis Research Foundation, could even reflect the low end of the scope of the problem. Falcone told the Guardian that as many as 20 million women could be impacted. Because of the lack of diagnostic tools – a certain diagnosis of endometriosis can only be made by surgical biopsy – the scale of the problem is not known.

“Honestly, the scientists which are going to look at the pathophysiology and diagnosis for this, they’re going to go where the money is,” Falcone said. “So, where’s the money? In cancer and heart disease. They’re just going where the funds are.”

“It is rather demoralizing.”

America was once a leader in endometriosis research. The disease was first catalogued by Albany, New York surgeon, Dr John A Sampson in the 1920s, who saw the disease in women’s pelvises and theorized that the cells, similar to those in the lining of the uterus, were the product of backwards menstruation (or so-called called retrograde menstruation).

Since, doctors have catalogued multiple seemingly “fatal flaws” to the theory. For example, 90% of women have so-called retrograde menstruation, but one in 10 have endometriosis. Scientists have found demonstrable differences between hormones in endometriosis and the lining of the uterus, or endometrium. On rare occasions, endometriosis has been found as far from the pelvis as the brain. And endometriosis has been found during fetal autopsies, obviously developing long before menstruation.

Yet, many scientists and doctors cling to “Sampson’s theory”.

“To me it’s interesting that there’s so much invested in that theory. It’s almost like challenging it or questioning some of the ideas is not done – it’s politically loaded to the extent that it’s no longer about science,” said Libby Hopton, director of research at the Vital Health Institute, an endometriosis specialty clinic in Los Gatos, California. She was also diagnosed with endometriosis and founded the Facebook support group Endo Metropolis.

“A lot of research has been undertaken to show this theory works or there’s some kind of hybrid theory, even though there are various fatal flaws in the theory,” said Hopton. “It’s like declaring a winner before the race is over, and no one is paying attention to the race anymore.”

According to patients and specialists, rampant misunderstanding of endometriosis extends to family physicians, general gynecologists and through America’s complex insurance infrastructure.

“You sit in the doctor’s office and they tell you to just get pregnant or get a hysterectomy, and you think to yourself, ‘How stupid are you that you think that’s going to work?’” said Fuersich.

Patients and specialists said that multiple rounds of ineffective treatments added up to big bills for patients.

One of the most respected endometriosis surgeons in the country, Dr David Redwine of Oregon, specialized in laparoscopic removal of endometriosis, inserting a fiber-optic camera into the abdominal cavity to view and remove endometriosis from the pelvis, until his retirement. This sort of surgery, called excisement, is considered the most effective treatment by an inner circle of endometriosis specialists.

“It would be rare for a woman to not have at least one surgery under her belt,” Redwine said. “The surgeries, cha-ching, cha-ching the birth control pills, cha-ching, cha-ching,” said Redwine, imitating a cash register.

“This kind of incomplete diagnosis, incomplete treatment, results in a revolving door of healthcare. We can treat symptoms with birth control pills, they might do a laparoscopy, but it might not do anything,” Redwine said about treatment by general gynecologists.

A recent study of more than 37,000 women presented at the Endocrinology Society’s 2014 meeting found that the healthcare costs of women with endometriosis were $13,199 in the first year after their diagnosis (average age: 36.4), $9,452 more than their counterparts. Over 10 years, they spent $26,305 more than the control group.

“My parents – I can’t even imagine how much money they’ve paid out,” said 32-year-old Fuersich, who was recently forced to move back in with them because she could not afford treatment on her salary as a pre-kindergarten teacher.

Complex cases of endometriosis, where organs in the pelvis fuse together, lesions infiltrate deep into tissue or where the disease crosses surgical specialties from bowels to intestines to ureters, uterus and ovaries can take up to nine hours to excise.

But the relative lack of surgery-based clinical studies showing effective treatment, Holton said, has left insurance companies to pay the same meager reimbursements for meticulous, nine-hour surgeries as for 30-minute attempts at laser destruction.

In the language of money in American medicine, coding, no specific code exists for different laparoscopic endometriosis procedures. Using Medicare codes, for example, all endometriosis laparoscopies are expressed as 58662. That code pays between $615 and $950, depending on a patient’s location.

For specialist surgeons who spend years training, those rates are untenable. Those payments set a baseline for private insurers to negotiate reimbursements, setting a kind of glass ceiling for rates.

Even if surgeons do accept private insurance, reimbursements don’t include out-of-network charges, typically applied when patients are required to travel for care. A reflection of the lack of in-network specialists, Holton said that 70% of patients are from outside of California.

“Insurance is not the patient’s friend in this regard,” said Guidone.

Clinics advise patients they are likely to pay a few thousand dollars out-of-pocket, not including travel costs, for one surgery alone. Redwine said that a “typical woman” would have “up to 15 previous surgeries” before she reached his clinic.

Nearly every specialist surgeon the Guardian spoke with had stopped accepting private insurance because of low reimbursement rates. Those that did, such as the Center for Endometriosis Care, often guide patients through a process to appeal an insurance company’s denial of coverage.

“Every doctor, I’ve worked with I’ve had to beg them to give me friends and family discounts,” said Fuersich.

By the time patients reach Cook’s office, Holton said, relationships have often deteriorated because sex is painful, family members or friends may not believe they are sick, they may have lost their jobs or nearly given up on finding care.

“Often these patients have already racked up a lot of bills,” said Holton. “So it’s just like a spiral, and the final insult is that they finally realize there is care out there, but they don’t have the means to access it.”

“The story is being repeated over and over and over again all around the US, and it’s not that the US is a bad system – women in Canada are having difficulties accessing care,” because of wait times, Holton said.

Efforts to reconfigure the coding system are underway, but even the American College of Obstetricians and Gynecologists (ACOG) considers the disease a specialty, despite its widespread impacts.

Dr Peter Cherouny, a gynecologist and professor emeritus of University of Vermont school of medicine, argued in a 1995 paper that gynecological procedures were routinely undervalued in comparison to male-only urological procedures by as much as 63% using a scale that incorporated old biases from Medicare’s inception in the 1960s.

“We thought we opened up a big avenue of discussion with ACOG, then there was a flurry activity, and no one seemed to want to take it on,” said Cherouny.

Levy said that five-year review committees haveimproved the discrepancies, but said that reimbursement for excision of endometriosis reflected the needs of a relatively small population, whose surgeons could call insurers to negotiate rates for each patient.

Still, one specialty surgeon said an even bigger concern is how the revolving door healthcare system’s repeated surgeries and ineffective treatments weigh upon patients.

“I’ve had people come see me who’ve had 10 surgeries,” said Falcone. “‘Why don’t you just see someone else?’” Falcone said he would ask, “And they basically [said], ‘I was desperate. I’m in pain. I thought maybe if he just operated again [it would get better].’ So, I think there is a culture of of taking advantage of these women with chronic pain with endometriosis.”

“We still don’t have a really clear message, if you’re in bed one day, two days, five days a month because of pelvic pain or any kind of pain during the month – something is wrong,” said Guidone.

Another sufferer, a girl who began feeling abdominal pain at 10 who is now 23, and wished to remain anonymous because she feared for her job, described how she was treated during the first six months of her period.

“My period was coming every 11 to 14 days. And so every 11 to 14 days I’d be laid out in agony, and that was kind of it, was trying to deal with that,” she said. “And a doctor at one point told me I was the little girl who cried wolf, and one day I would be really sick and no one would believe me. And so I just kind of shut up, and that was the first six months after I started my period.”

When the woman went to a children’s hospital for routine care she appeared to be in so much pain that a pediatrician thought her appendix had burst and sent her to the emergency room.

“The doctor took one look at me and said, ‘This is not normal. How could anyone think this was normal?’”

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