![]() The World Health Organization estimates that it affects approximately one in 10 people with female anatomy globally. “When you have pain every day or you’re trying to start a family,” he says, “you will do whatever it takes.”Įndometriosis is such a vexing disease that even the experts don’t know how common it is. But he understands why the promise of excision surgery is attractive. ![]() “When you have pain every day or you’re trying to start a family, you will do whatever it takes.”Īrnold Advincula, a professor of women’s health at Columbia University Medical Center and the chief of gynecologic specialty surgery at New York City’s Sloane Hospital for Women, has found himself increasingly frustrated with the misinformation his patients hear in Nancy’s Nook he says that Nancy’s Nook members often don’t believe him when he tells them that treatments other than excision can be effective. The pricey procedures, they say, are their only option for getting rid of their pain or restoring their fertility. When members of Nancy’s Nook express reservations about paying tens of thousands of dollars out-of-pocket for their excision surgeries, the moderators chastise them for their lack of financial creativity. ![]() Many Nancy’s Nook physicians are fee-for-service providers who either don’t provide insurance or operate-of-network. Former members of the group allege that the moderators frequently delete negative reviews of surgeons, a few of whom are religious like Claire’s doctor, and doctors who recommend treatments other than excision surgery are barred from the list. She feels naïve for having believed his claims-but with the endorsement of so many patients on what appeared to be such a reputable site, excision seemed to be the best possible option.Ĭlaire hadn’t realized that Nancy’s Nook, which was founded by Nancy Petersen, a retired nurse and endometriosis patient who says she was cured by excision surgery, isn’t the neutral clearinghouse of accurate medical information that it claims to be. It’s been five years since Claire’s excision surgery, and contrary to her doctor’s promises, most of her pain has returned. Claire later discovered (and Mother Jones confirmed) that her surgeon was devoutly Catholic and thus did not prescribe hormonal contraceptives-a fact that wasn’t mentioned on the Nancy’s Nook list. “He looked at me like I was crazy,” she recalls. So she asked the surgeon to prescribe birth control to manage her symptoms and prevent pregnancy. But after a few months, she still had some lingering pain. Plus, unlike many group members who shared they had to pay out of pocket, her insurance covered the surgery.Īfter the surgery, Claire did feel better-at first. She was elated, since she had already had several unsuccessful ones. At the pre-surgery consultation, the doctor told her that her pain would disappear, and she would never need another endometriosis surgery. For the first time, Claire was hopeful about a pain-free future.Ĭlaire booked an appointment with one of the doctors on the list in 2018. Many of the 189,000 group members raved about their results. Done correctly, the group moderators said, excision surgery would cure Claire’s endometriosis once and for all. The procedure requires general anesthesia, and it can take anywhere from under an hour to six hours, depending on the extent and complexity of the disease. The Nancy’s Nook-approved surgeons were experts in a surgical process called excision, which involves cutting all the endometriosis out. The group leaders and members cautioned that treating endometriosis with these interventions was based on misinformation spread by paternalistic doctors who didn’t know much about the condition. Unlike most doctors, she learned from the group, these surgeons didn’t address the symptoms of endometriosis with hormonal medications, or a minor surgery called ablation, or hysterectomy. The hormonal birth control that her doctor had prescribed took the edge off her symptoms, but it was by no means a cure.Ĭlaire, whose name has been changed to protect her privacy, had resigned herself to living with a certain amount of pain-until she found a thriving Facebook group called Nancy’s Nook with a database of more than a hundred physicians who specialized in her problem. At 37, she had suffered from excruciating, heavy periods for more than two decades with little help from doctors, even after she finally was diagnosed with endometriosis, a condition where tissue that resembles the lining of the uterus grows in parts of the body other than the womb, often causing significant pain and infertility. When Claire first got an appointment with the famous surgeon, she couldn’t believe her good luck. Fight disinformation: Sign up for the free Mother Jones Daily newsletter and follow the news that matters.
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