Women suffering in silence: The endometriosis crisis

There's a little-known but extremely common disease afflicting 1 in every 10 women in the United States and costing the nation an estimated $119 billion annually. Many women struggle in silence, not even knowing they have it. The disorder is known as endometriosis and can affect women of all ages.

"So many women are unhappy. They lose work time; they lose productivity; they lose their jobs because of this disease," said Dr. Tamer Seckin, a renowned New York City–based gynecologist and endometriosis surgeon. "They shouldn't be discriminated because they have this condition."

The $119 billion cost estimate assumes 10 percent prevalence rate of endometriosis among women of reproductive age. Globally, endometriosis affects at least 176 million women, and experts believe the real number is higher due to undiagnosed cases. "Endometriosis imposes a substantial economic burden on society, mainly related to productivity loss," wrote researchers for Oxford Journals' Human Reproduction Update.

Endometriosis occurs when uterine tissue grows outside the uterus, potentially affecting other organs and oftentimes causing severe pain, especially before and during a woman's menstrual cycle. Symptoms include debilitating pain, infertility, changes in mood, painful sex and other issues that may interfere with daily life.

This painful disorder causes women to lose, on average, 10 hours of work per week, or one workday, to rest and see doctors, according to a study on lost workplace productivity. Women are oftentimes misdiagnosed, resulting in delayed treatment — and costs have been rising steadily: the estimated tab attributed to lost productivity and other factors was $22 billion in 2002.

Lack of funding, research and awareness surrounding endometriosis are key issues. Some critics have gone so far as to call the lack of funding criminal.

Physicians, experts and celebrities are speaking out, including actresses Lena Dunham, Susan Sarandon and Whoopi Goldberg, who have shared their personal stories about struggling with this condition.

Seckin said that about 95 percent of the patients he has seen have already had at least one surgery for symptoms that range from back and pelvic pain to nausea to infertility (which is often related to endometriosis but goes undiagnosed).

"One patient I have had spent over $250,000 on fertility treatments because her doctor never tested her for endometriosis. Another patient had a hysterectomy at 19 years old. It's outrageous." Seckin added, "You can live with [endometriosis]; it won't kill you, really, because it's a benign disease. However, it acts like a malignant disease because it invades the most productive portion of someone's life."

Studies do show that those who suffer from endometriosis are also at higher risk of getting ovarian cancer and heart disease, according to the American Heart Association and independent researchers.

"It's one of those things that women don't talk about, and so anything you can do to help them come forward and find out and get diagnosed and get treatment before it turns into something really horrible I think is really important," said Susan Sarandon, who also has the disease.

Seckin, along with supermodel, author and "Top Chef" co-host Padma Lakshmi, who was diagnosed with endometriosis at the age of 36, founded the Endometriosis Foundation of America in the hopes of raising money and awareness about the disease.

"There were years when my friends just thought I was the girl that got the stomachache all the time and probably equated it with me being neurotic and me just being generally antisocial," Lena Dunham, who struggles with endometriosis, told CNBC at an event called the "Blossom Ball" that honored her decision to go public about her private struggle.

Dunham has written about her harrowing experience not knowing what was wrong with her for over a decade. "While endometriosis affects 1 out of every 10 women, only a fraction of those cases will ever be diagnosed," Dunham said. "Many will be dismissed as having mere menstrual pain or, worse yet, some modern version of hysteria."

Lakshmi said, "If I had been diagnosed at 16 or 26 or even 32, I would have gained valuable time. I would have been able to be more present for my family and friends … [had] a greater capacity to advance professionally, and I would have also had a greater capacity for intimacy."

Lakshmi has also been public about the fact that having endometriosis was a major factor in the dissolution of her marriage to author Salman Rushdie in 2007.

Jhumka Gupta, a social epidemiologist and assistant professor at George Mason University, Department of Global and Community Health, said the same societal attitudes that dismiss, victim-blame and stigmatize other important public health issues faced by women, such as sexual assault or postpartum depression (subjects she has studied), also are at play when it comes to endometriosis.

"The difference is, endometriosis is virtually absent from public health and social justice advocacy agendas," Gupta said. "The medical and public health communities and society at large are either uninformed or misinformed."

Endometriosis sufferers and experts who spoke with CNBC said "What's wrong with you?" is a question that women with endometriosis hate to hear.

Gupta said workplace advocacy remains behind the curve. Women and girls who suffer from endometriosis may not be willing to openly discuss their challenges and request accommodations without fear of being dismissed or ostracized by colleagues or managers.

"Discussions about 'Leaning In' tend to focus on women, self-confidence and career challenges women may face once they become parents. However, these high-profile discussions rarely ever include career challenges faced by women who have debilitating health issues that are linked — scientifically, medically or otherwise — in the public's mind to a 'woman's problem' such as menstruation," Gupta said. "No one wants to let you take time off because of what they perceive as just a bad period."

A big part of the problem is the difficulty doctors face in trying to diagnose endometriosis. There is no case of endometriosis being diagnosed with an MRI, one of the most comprehensive imaging tests, experts told CNBC.

A group of researchers and physicians are currently conducting the ROSE (Research Outsmarts Endometriosis) study, which aims to "develop an understanding of the types of cells (and their genetic/genomic characteristics) that initiate endometriosis lesions," according to Peter K. Gregersen, principal investigator and head of the Boas Center for Genomics and Human Genetics at the Feinstein Institute.

"This may then lead us to early diagnostics, so that we can tell a young woman with symptoms whether she is likely to have endo and should be further evaluated," Gregersen said.

It is also one of the only diseases that can be definitively diagnosed through laparoscopic surgery, which helps to explain an average seven- to 10-year delay in diagnosis.

The National Institutes of Health has a total 2016 budget of $32.3 billion. Of that, total funding for endometriosis is $11 million this year and projected to be similar in 2017.

To put that into perspective, although endometriosis affects a large percentage of the female population, the disease gets less research funding than adolescent sexual activity and teenage pregnancy.

It gets the same funding as diseases like ataxia-telangiectasia, Charcot-Marie-Tooth Disease, interstitial cystitis, osteogenesis imperfecta and valley fever.

"That's totally totally criminal, you know?" Lakshmi said.

"I am not surprised by the funding discrepancies," Gregersen said. "The solution is advocacy to Congress or massive philanthropy, because companies are not going to fund this without a path forward to lucrative therapeutics."

The National Institutes of Health told CNBC that Congress appropriates funds to the agency, which determines NIH's budget for the fiscal year. (The budget process calendar explains the various steps that lead to NIH receiving appropriated funds from Congress.)

Pharmaceutical company AbbVie recently found in a study that total direct costs due to endometriosis amounted to about $12,118 per patient per year in the United States, and indirect costs were about $15,737 per patient per year. The study's authors also stated that the long-term burden of endometriosis following diagnosis is still understudied. The company has developed an oral treatment (in collaboration with Neurocrine Biosciences) for the management of endometriosis and uterine fibroids, but AbbVie declined to elaborate on its study to CNBC or its plans for the oral treatment.

Seckin and other specialists say the endometriosis surgery itself is more complicated than a hysterectomy and that getting insurance to cover the costly and time-consuming procedure is another obstacle often faced by many women.

Many of the top endometriosis specialists and surgeons do not take insurance, because they say there is very little to no reimbursement for insurers and that insurers will reimburse the same amount whether an operation takes 40 minutes or four hours.

In cases where endometriosis treatment is not covered, it is often because there is a lack of clinical research on the effectiveness surgery, said health-care billing expert Alexander Anthony, vice president at Atlanta-based Four Seasons Healthcare Consultants. "Payers typically view this procedure as investigational (experimental) service."

Patients suffering from endometriosis that elect to have a total hysterectomy are not having issues with reimbursement. "It is the laparoscopic surgery that is lacking in fair reimbursement," Anthony said.

Heather C. Guidone, surgical program director at the Center for Endometriosis Care, along with others who treat the disorder, lament that the reimbursement for treatment and surgery is a broken system. "No incentives exist to improve quality of or perform specialized treatment for endometriosis, and it is not true that clinical data on the efficacy of laparoscopic intervention for the disease is lacking," Guidone said.

Aetna spokesman Matthew Clyburn told CNBC that Aetna benefit plans include the evaluation and standard treatment of endometriosis, including the laparoscopic procedures commonly used to diagnose and treat the condition.

"We have a vast network of surgeons in our network that offer these services. We reimburse them at negotiated rates to ensure they are paid appropriately for taking care of our members with endometriosis," he said. "A small number of surgeons from outside our network perform these procedures and send us bills for amounts that vary significantly. In some cases the charges are much higher than we believe to be reasonable, and do not have any relationship with the quality of the procedure," he added.

Spokespeople for Humana, Cigna and Aetna would not quantify reimbursement amounts for the surgery. UnitedHealth Group did not respond to multiple requests for comment.

Guidone said understanding the precise nature of the surgery helps to understand higher costs. "Our surgeries routinely take four to six hours on average for meticulous disease removal, whereas in a generalist setting, this may be performed in 75 minutes, leaving disease and adhesions or other abnormal pathology behind." She added, "Excision is far more meticulous and requires far higher skill, yet is handled by payers as though it were the same."

Nicholas Fogelson, an OB/GYN based in Portland, Oregon, wrote in a recent blog post that the distinction between types of endometriosis procedures is key. "There are no codes that adequately describe the amount of work it takes to resect endometriosis. Unfortunately, this leaves a physician who does four hours of resection with the same codes as a physician that does 30 minutes of ablation. Both get paid the same, though the work is completely different and the education and experience required to do the complex surgery is completely different."

Lakshmi recently traveled to Capitol Hill and met with Democratic senators Chuck Schumer (New York), Elizabeth Warren (Massachusetts) and Kirsten Gillibrand (New York).

"I just wanted to put it in their radar and make it personal and tell them how it affected me and millions of other young girls all over this country," Lakshmi said.

Insurance companies in the past did not reimburse for IVF procedures until lobbyists took the fight to Capitol Hill. "This is going to have to be an effort fought on Capitol Hill," said Anthony of Four Seasons Healthcare Consultants.

IVF is directly related to endometriosis because it can cause infertility. "They need to fight to make insurance companies reimburse for this (fairly). ... It is pointless to spend money on IVF unless you know you have been treated for endometriosis, one of the main diagnoses for female infertility," Anthony said.

Women who struggle with the disease remain hopeful.

"Women with endo, when cared for properly, are in fact just as effective and powerful members of society as anybody else," Dunham said.

She has also written that she is lucky to have both good insurance and enough money to go out of pocket if necessary. "I know I'm lucky in the grand health scheme, but I also know that I am one of many women who grasp for a sense of consistent well-being, fight against the betrayals of their bodies, and who are often met with skepticism by doctors trained to view painful periods as the lot of women who should learn to grin and bear it."