When Claire first got an appointment with the famous surgeon, she couldn’t believe her good luck. 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. The hormonal birth control that her doctor had prescribed took the edge off her symptoms, but it was by no means a cure.
Claire, 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. 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 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.
The Nancy’s Nook-approved surgeons were experts in a surgical process called excision, which involves cutting all the endometriosis out. 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. Done correctly, the group moderators said, excision surgery would cure Claire’s endometriosis once and for all. Many of the 189,000 group members raved about their results. For the first time, Claire was hopeful about a pain-free future.
Claire booked an appointment with one of the doctors on the list in 2018. At the pre-surgery consultation, the doctor told her that her pain would disappear, and she would never need another endometriosis surgery. She was elated, since she had already had several unsuccessful ones. Plus, unlike many group members who shared they had to pay out of pocket, her insurance covered the surgery.
After the surgery, Claire did feel better—at first. But after a few months, she still had some lingering pain. So she asked the surgeon to prescribe birth control to manage her symptoms and prevent pregnancy. “He looked at me like I was crazy,” she recalls. 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.
It’s been five years since Claire’s excision surgery, and contrary to her doctor’s promises, most of her pain has returned. 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.
Claire 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. 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. Many Nancy’s Nook physicians are fee-for-service providers who either don’t provide insurance or operate-of-network. 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. The pricey procedures, they say, are their only option for getting rid of their pain or restoring their fertility.
Arnold 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. 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,” he says, “you will do whatever it takes.”
Endometriosis is such a vexing disease that even the experts don’t know how common it is. The World Health Organization estimates that it affects approximately one in 10 people with female anatomy globally. Its symptoms vary widely. In addition to painful periods, it can cause infertility, nausea, fatigue, and, depending on where the lesions occur, pain during urination, bowel movements, and sexual intercourse. In rare cases, the disease migrates outside the abdomen; it has been found in regions as remote as the lungs and the brain. The condition appears to be diagnosed more frequently in white people than in Black or Hispanic people, but with most studies involving a disproportionate number of white patients compared to those of other races, it’s unclear if that means greater susceptibility for white people. Evidence suggests that non-white endometriosis patients are less likely to be prescribed drugs to manage their symptoms and more likely to experience surgical complications.
Until a few decades ago, most people suffering from endometriosis symptoms didn’t know to ask about the disease. Many OBGYNs lack expertise in the disease, some even dismissing their patients’ pain as common menstrual cramps. Because it can mimic other conditions, even experienced gynecologists can miss it so patients might wait from eight to 12 years before a diagnosis. Endometriosis doesn’t always show up on ultrasounds or even MRIs, so some experts say a definitive diagnosis requires laparoscopy. As with so many other conditions, with so little accessible information, the emergence of internet forums in the early 2000s was a boon to women who were looking for answers to explain their pain.
Once the diagnosis is confirmed, most specialists rely on trial and error with different combinations of medications and therapies for chronic pain. But in Nancy’s Nook, the reams of excision-focused information and the glowing patient testimonials can suggest that you’ve stumbled upon a secret group of experts who know something your doctor doesn’t. New members often find solace in reading about others’ experiences with doctors who they say engage in “medical gaslighting.” Columbia’s Advincula observed that Nancy’s Nook appeals to people adept at internet research. “These are smart people who get suckered in,” he told me. “These are educated, high-functioning people.”
Yet even medically literate patients may have no idea that the site’s single-minded focus on excision surgery is not substantiated by current scientific evidence or clinical recommendations. The gold standard for endometriosis treatment guidelines is published by the European Society of Human Reproduction and Embryology. Last year the most recent version, which reflects expert consensus based on peer-reviewed research where possible, concluded that evidence that excision is superior to ablation is considered weak; some studies found a difference, but not all of them. What’s more, the guidelines recommend surgery as just one possible treatment—other evidence-backed therapies include hormonal medications and hysterectomy.
Nancy’s Nook assures group members that recurrence of pain after expert excision surgery is low—Petersen told me “Well under 20 percent” require additional treatment. But data to back up that claim simply doesn’t exist. Sawsan As-Sanie, an endometriosis specialist at the University of Michigan, estimated that up to 50 percent of excision patients continue to experience pain. “I perform a lot of excisional surgery, but I also very much believe in the standard of care that endometriosis is a chronic condition,” she says. “It is a very estrogen-dependent condition, and the foundation of treatment is hormone suppression.”
Dr. Erin Carey, a gynecologist who runs the endometriosis clinic at the University of North Carolina-Chapel Hill, told me that because of Nancy’s Nook and a few other social media groups, she now spends hours trying to convince patients that even if they have an excision surgery, they’ll likely still need hormonal medications and maybe a hysterectomy to control their symptoms. Carey’s clinic does not appear on the Nancy’s Nook list, even though it has excellent patient reviews and is one of only two centers in the country to receive a special National Institutes of Health grant for endometriosis research. “I’m not saying all of our data is perfect,” Carey told me. “But we certainly have good evidence regarding the use of birth control and the use of hysterectomy for the management of endometriosis.”
So why do people trust Nancy’s Nook over physicians like Carey? A mountain of evidence shows that women, along with nonbinary and trans people, frequently have their pain and symptoms ignored by doctors. So they’ve become good at advocating for themselves, finding information on the internet, and sharing it. Because doctors have dismissed them in the past, these patients are primed to believe the people telling them that medical authorities have it all wrong, says researcher Jenna Sherman, who has studied gendered health misinformation with the online fact-checking and digital literacy nonprofit Meedan.
Unlike the ubiquitous online health grifters who pass along misinformation to sell something, Sherman finds that usually leaders and members of online patient groups earnestly believe they’re helping others navigate what can be a frustrating, opaque, and even frightening medical system. But when well-meaning people in patient forums refuse to modify the advice that they’re offering so that it reflects scientific consensus, Sherman says, they can cause damage. “They’re ignoring legitimate empirical evidence because of their ideological or political or religious framework,” she says. “Essentially, that becomes manipulative.”
Nancy Petersen is herself an endometriosis patient. She told me how, as a young woman in the late 1960s, she followed the advice of her gynecologist, first taking birth control pills and then having a hysterectomy in hopes of treating the constant pain that plagued her. Neither approach worked, and her symptoms worsened over the next two decades—even as she was “dismissed as neurotic” by her doctors. In 1985, she attended a talk on endometriosis by Dr. David Redwine, a surgical gynecologist and expert on the condition who fervently believed that the only effective treatment was excision surgery. Petersen was convinced, and Redwine ended up operating successfully on her.
She began lecturing and writing about excision, sometimes in partnership with Redwine. In 2012, nearly thirty years after her surgery, she founded the Nancy’s Nook Facebook group. Since then, she has built the community, website, and list of recommended surgeons with the help of a trusted group of moderators, all of whom are endometriosis patients. “I had close to 30 years of horrible pain,” she told me. “I spent 22 years sleeping no more than two hours a night because of missed disease. My basic line is nobody should have to live like this.”
Redwine passed away in October; in 2011 he retired, not long after it was revealed that he had sex with a patient. But Petersen, now in her 70s, continues to spread the gospel of excision. She told me she now puts in “50 or 60 hours a week” managing the group from her home in Central Oregon. Petersen emphasizes that she and her fellow moderators receive no compensation. “Pretty much every admin that works with us—they’re there because of their heart,” she said. She is, however, awarded with recognition, invitations to major conferences, and a position of authority in the close-knit world of endometriosis care. The physicians I spoke with for this article confirmed that they don’t pay to be included in Nancy’s Nook’s list of doctors, but several acknowledged that it is a powerful engine for patient referrals.
For some endometriosis patients, excision surgery has been a godsend. “I already feel better than I have in years,” enthused one recent excision patient. Another wrote that her surgeon “saved my life. Literally.” They praise Petersen, as well. “This group and its admins literally saved my life from a disease that stole years and years of my young adult life and left me childless,” wrote one. “I now get to live the rest of my days pain free because of the bravery of Nancy and her team!” Another gushed, “I was gaslit by all of my previous doctors. Through you, I was able to finally know that something was wrong with the care I had received.”
But other former group members told me that the posts are curated to reflect mostly positive patient experiences. Expression s of frustration are often rebuffed. Recently a member posted that they were about to have their second excision surgery. “It’s discouraging to be having another excision surgery by a specialist from the list less than three years later…how many excision surgeries until it’s effective?” Petersen replied that the patient should discuss the situation with the doctor, but “true recurrence rates are quite low.”
Members report Petersen routinely deletes negative surgeon reviews. Yvette Marie, a former member of Nancy’s Nook who didn’t want me to use her last name for fear of retribution, said she was kicked out of the group because in a comment she criticized a surgeon on the group’s list. When she messaged Petersen to ask about the incident, Petersen told her that she had violated the rules of the group by trying to “sneak” a negative review into a discussion. When Petersen does allow a negative review, she often turns off commenting. She sometimes informs members that she will share all negative feedback about surgeons with the surgeons themselves, and occasionally takes the liberty of contacting members’ physicians about a comment they have posted. In March, a member expressed concern that the doctor had burned away some areas of endometriosis using ablation, rather than performing excision. Petersen replied that she had “discussed the post with the doctor” and confirmed excision was done. “I will contact a doctor and say, ‘There is a post here that you need to try to work with,’” she said, thereby giving them a chance to respond.
Sometimes, Petersen can come off as irritated and disdainful. Before any new member posts in the group, she insists they review the existing material, most of which celebrates the benefits of excision. Should a member repeat a previously asked question Petersen often chastises them. “When you agree to read the material, then arrive in Nook ignoring the material, asking me or an admin to run down what you want to know, you not only went back on your agreement but you missed the whole intent of this group,” Petersen posted in 2022 as a warning to new members. Earlier this year, she seemed to imply that those who didn’t read the files were responsible for their own suffering: “If you don’t do the reading you cannot protect yourself from future failed surgeries, harm, angst, and injury or unnecessary organ removal with its attendant risks,” she wrote.
It’s not entirely clear exactly how a doctor gets on the Nancy’s Nook list. Petersen told me that she contacts physicians that group members recommend and initiates a conversation to see if their medical views align with hers. One physician told me that after endorsing the use of hormonal medication to treat endometriosis one of his colleagues had taken off the list. Petersen confirmed that doctors who recommend treatments other than excision are “not a good fit” for the Nancy’s Nook list, even though the ESHRE guidelines endorse non-excision treatments. She has no policies in place barring doctors who make outsize claims about their success rates, or even those who have disciplinary action on their licenses—she considers it a patient’s job to thoroughly research physicians before entering into treatment.
Petersen claims that, consistent with Facebook rules, the group does not offer medical advice beyond telling patients they need a second opinion. Yet her comments often read like clinical recommendations. To a member who wrote that a physician had recommended ovary removal and hormone replacement therapy, Petersen responded that “removing your ovaries will do nothing” and cautioned against using hormones. (The clinical guidelines cite some evidence that hysterectomy including removal of the ovaries controls endometriosis pain better than surgeries that remove just the uterus. In addition, there’s strong evidence from a 2022 literature review that “hormone treatments lead to a clinically significant reduction in pain when compared to placebo.”)
In a post from April, a member asked for help interpreting a post-surgery pathology report that seemed to suggest the surgeon had removed something that was not endometriosis. “If its removal reduced your pain, regardless of what it is, it’s a gift, I would say,” responded Petersen. She frequently cautions members against having children until they undergo excision surgery. “If you have a successful pregnancy and deliver a healthy baby, your disease remains and will resume causing significant pain but now you have a new life that needs you 24/7,” she warned a member in a recent comment. “Bonding becomes a challenge after delivery when pain returns unfettered,” she told someone else.
Petersen says that her heavy-handed approach to running the group comes from her desire to prevent the spread of misinformation; if people share the list of physicians outside the group, context about how the list came together will be lost. Plus, she doesn’t allow much discussion, because previously, group members have used the comments to pass on bad advice. Granted, she sometimes deleted negative physician reviews, but only those she considered “ranting and raving.” As for pressuring anyone to go to extreme measures to pay for surgery? “I said, ‘Some patients have done things like sell a second car or take out a second mortgage or change their insurance policy,'” she explained. Since she doesn’t believe that current medical guidelines are in patients’ best interests, Petersen said she saw no problem offering advice that went against them.
Yvette Marie, the former Nancy’s Nook member, told me that initially, she thought the group was an answer to her prayers. “It was just like, you hear the choir of angels singing,” she told me. “All of these individuals going through endometriosis and finding doctors that believe them and can diagnose them and are treating them—and wow, they’re having surgery and getting their quality of life back.” But when Yvette had her own surgery in 2018, she said the Nancy’s Nook doctor not only didn’t adequately manage her pain after surgery, but her pain has only worsened. She hasn’t been able to work since 2019.
That year, she started a Facebook group for people disappointed by their experience in Nancy’s Nook. She imagined she might draw a handful of members, but the response was overwhelming. Today, her group, The Truth About Nancy’s Nook, has nearly 5,000 members, many of whom suffered a recurrence of their endometriosis return after excision surgery. “The doctors kept telling me it couldn’t grow back that quickly, but I knew 9 weeks after my 1st Nook surgery that the pain was back,” wrote one. “My pain started recurring 3 months post-op and has been getting progressively worse for the last 2 years,” lamented another. “When you’re in debilitating, crippling pain, and you’re desperate and not sleeping and you can barely eat because you’re in so much pain, and you’re so exhausted, you can’t think straight,” she told me. “And it’s very easy to fall into whatever siren song they’re singing about how the surgery will fix you.”
One reason for the paucity of information about endometriosis is the deeply entrenched sexism in our medical system. It’s estimated that at least a tenth of people assigned female sex at birth have endometriosis—yet in 2022, the disease received just .038 percent of the National Institutes of Health research budget, or $2 per patient. Compare that to the $130 per patient for research on Crohn’s disease, which affects men and women roughly equally but is far less common, affecting about 0.2 percent of the population.
A 2017 analysis found that 84 percent of male-specific surgeries were reimbursed at higher rates than comparable female surgeries. Because of the way that the Centers for Medicare & Medicaid Services caps reimbursements, subspecialties within a field compete for the same pot of money. Within women’s reproductive healthcare services, obstetrics—the field of pregnancy and childbirth—is the most lucrative. Surgeries that have nothing to do with procreation—like those that treat endometriosis—are comparatively poorly compensated.
This is how reimbursement is determined: CMS assigns each medical procedure a certain number of “relative value units” according to its complexity and overall value. In this system, a cesarean delivery is worth 40.4 RVUs, and a vaginal delivery is worth 36.6 RVUs. Surgery for endometriosis is worth just 12.2 RVUs—even though it potentially can take 10 times as long as a C-section and requires much more skill. Because there is only one reimbursement code for endometriosis surgery, the pay is the same—whether the surgeon removes one small spot in 15 minutes, or painstakingly removes extensive disease over six hours.
Louise King, an endometriosis specialist and assistant professor of obstetrics, gynecology and reproductive biology at Harvard Medical School, has agitated for a new code for complex endometriosis surgery for years, with no success. In part, that’s because the medical establishment typically ignores gynecologic problems unrelated to reproduction. Just ask anyone who is done having babies and seeks a gynecologist who isn’t also an obstetrician with a waiting room full of pregnant people. King says it’s nearly impossible to run a gynecology practice if you’re not getting obstetrics income.
The Nancy’s Nook moderators seem to accept well-compensated physicians as a given. Yet when group members express anxiety about paying hundreds of thousands of dollars for their surgery, the moderators tell them to buck up. “Dump the cable, stop Amazoning, defer vacation, etc,” advised one moderator in 2019. “Ask for cash gifts for birthdays and holidays. Sell at a garage sale or on Ebay or Etsy.” In a 2021 post, a patient reported having sold her family’s home to pay for an excision surgery. “She saved and sacrificed to get the surgeon she chose,” praised the same moderator in a comment.
“So often I see people say they cannot afford the co-pays or out-of-network fees for better care,” wrote Petersen in a 2017 post. “Maybe delaying some of the trips, or purchases, or looking even at a home equity loan, or temporary loan from family to get back on your feet would give you a chance to reclaim your life from this disease.” She makes similar pronouncements about people who express reluctance to travel long distances to see one of the endorsed surgeons. “Don’t tell me how unfair it is, or how far you have to travel,” Petersen groused in a post earlier this year.
One possible reason that many Nancy’s Nook doctors seem to eschew hormonal management of symptoms is that performing surgery is more lucrative than prescribing medications. Yet, as Claire discovered, there’s a subset of surgeons whose reluctance to offer birth control might come from religious conviction rather than financial motivation. Take Nick Kongoasa, a Nancy’s Nook surgeon in Atlanta, who lays out his mission on his website: “I feel called to treat women who suffer from pain and infertility, and help them reach goals of eliminating endo from their bodies, and of stepping away from rounds of medical suppression and towards the joys of conceiving and bearing children.” There is no mention of his faith on that site, but on a separate site for his practice, his bio states that he is “a parishioner of Our Lady of the Assumption Catholic Church.”
Kongoasa—who has an employee serving as a moderator for Nancy’s Nook—repeatedly discourages readers from using hormonal birth control. One question on his practice’s FAQ section, for example, is from a parent whose 13-year-old is suffering from endometriosis pain. Instead of controlling her pain with birth control, he advises, “I would prefer she has a consultation with an integrative medicine specialist to see how her body’s inflammatory load can be reduced through personalized diet, supplements, etc.” Kongoasa doesn’t mention that he also serves as a medical consultant for the anti-abortion website “Natural Womanhood.” There, in addition to articles about endometriosis, he also served as the medical reviewer on an article promoting the widely discredited abortion pill reversal protocol.
Dr. Patrick Yeung, another Nancy’s Nook surgeon, practices NaProTechnology, an unproven Catholic alternative to IVF developed at a Catholic clinic called the Pope Paul VI Institute. As part of this approach, Yeung offers excision surgery for endometriosis patients struggling with infertility. On his Instagram account, citing unpublished data as his source, Yeung claims,“The rate of pregnancy after optimal excision of endometriosis and a restorative fertility approach is about 75 percent.” Yet the ESHRE guidelines, based on a body of literature, caution that the evidence for improved fertility after excision surgery is shaky at best. For mild endometriosis, there is some evidence that excision can help, but for more severe versions, the guidance says, “No compelling evidence exists that operative laparoscopy for [deep endometriosis] improves fertility.”
Yeung’s website notes he opposes the use of hormonal birth control for endometriosis because it only masks the symptoms rather than treating them. (This isn’t true; the guidelines suggest that hormonal medications can prevent new endometriosis from growing, especially after surgery.) Birth control, according to Yeung, is like “pouring water on a fire—while the fire may go out momentarily, the embers continue to smolder, and the fire can reignite later.” In a 2020 video appearance for the Archdiocese of St. Louis, he refers to the use of birth control as an attempt to “disinvite the author of life” from the “marital embrace.” In a phone call, Yeung maintained that data from his practice supports his belief that hormonal birth control doesn’t treat endometriosis, and he noted that most of the studies that show limited fertility improvement from excision surgery are about IVF, which his clinic doesn’t offer. There is no contradiction, he says, between good medicine and his Catholic morals. “It’s all part of the same truth—how we’re created, how things work, how the human person works,” he told me.
A Mother Jones analysis of the websites of the 116 surgeons on the Nancy’s Nook list found that at least six either identify as Catholic or have training from Catholic medical groups—but it’s possible others do, too. Doctors aren’t required to disclose their motivations for discouraging patients from hormonal medications, and Nancy’s Nook doesn’t ask. Neither Kongoasa nor Claire’s surgeon—the one who refused to prescribe birth control—responded to questions from Mother Jones for this article.
Petersen is aware of the complaints about Nancy’s Nook, but she doesn’t put much stock in them. “There’s a whole group of people out there that hate what we do, and they put out misinformation all the time,” she told me. She maintains that most of the criticisms of her group come from “people who are angry about their disease” and “make up things.”
After her endometriosis symptoms returned, Claire went back to her regular gynecologist. Last year, he diagnosed her with adenomyosis, a condition related to endometriosis that affects the uterus. He prescribed birth control and treated her with a hysterectomy, a procedure that her Catholic Nancy’s Nook surgeon did not offer. Her symptoms, she says, have improved, though she may soon opt to have her ovaries removed, as well.
If Claire had it to do over again, she said, she never would have seen the excision surgeon. She was disappointed by Nancy’s Nook and worries others will be, too. “A lot of women are looking for a place for resource-sharing, to know what the expectation can be versus reality,” she said. “To have that be smashed—it’s just sad.”