In an Instagram video originally posted in December 2019, physical therapist Sallie Sarrel and surgeon Andrea Vidali stand in the hallway of a medical facility, dressed in reindeer antlers and a Santa hat, respectively. “’Twas the night before Endo Summit’s tickets go on sale,” Sarrel recites into the camera, “not a creature was stirring, ’cept the one up in pain to no avail.” Vidali continues, “At the keyboard they perch filled with glee, because at the stroke of midnight they could buy a ticket to see Nancy.” (More on her later.) Sarrel again: “Their burning questions ran amok in their heads, so many hours spent with heating pads in their beds.” This Christmas-themed social media stunt was an advertisement for the Endometriosis Summit, an annual conference founded that year by Sarrel and Vidali with the goal of educating both medical providers and patients about the latest treatments for the chronic disease. More than an event, it is also a brand: the Summit has an affiliated fertility conference and a series of webinars. For $48.73, you can even buy a Summit-branded Endometriosis Awareness sweatshirt in butter yellow.
However cringe in execution, Sarrel and Vidali’s Instagram post highlights some of the basic difficulties that patients with endometriosis face. In medicine, as in the culture at large, women’s pain is often treated like the drone of a nearby mosquito: constant and annoying, but an inevitable part of nature. Endometriosis, then, is the kind of illness that tends to make people’s eyes glaze over when it comes up in conversation. Basically, it occurs when tissue similar to that lining the womb grows in other parts of the body. Some people with endo are asymptomatic. Others experience intense menstrual cramps, pain during and after penetrative sex, heavy periods, fatigue, and nausea. Endometriosis can also be life-threatening: complications include septic shock from the blood of burst ovarian cysts, which are associated with the disease; ovarian torsion, where a large cyst essentially strangles the ovary’s blood supply; and difficulties that occur when endo tissue reaches the bladder and kidneys (some people need transplants). Roughly 10 percent of women and girls globally suffer from endometriosis, according to the World Health Organization. Of course, it also affects trans and nonbinary people, and, in extremely rare instances, endo tissue has been found in cis men.
Little is known about what causes endometriosis, although studies have linked it to everything from inflammation to child abuse to longstanding bacterial infections. This lack of clarity can be attributed to multiple factors, including insufficient funding for research, ingrained sexism, and the sheer complexity of the disease. The existing literature suggests that research priorities have been arbitrary, to put it lightly: one now-retracted study published in the journal Fertility and Sterility claimed women with severe endo were more attractive, based, bizarrely, on the age they first had sex, while others have focused on how their partners were doing.
In addition to the mysteries of its etiology, the disease is notoriously hard to diagnose. Diagnosis usually occurs via a surgery called laparoscopy, where a thin tube with a camera attached to it is inserted through a patient’s belly button to help the surgeon identify cysts or endometriosis tissue to remove. If the surgeon discovers endometriosis tissue while they are inside, the options for removal are ablation, where the tissue is burned off, or excision, where it is cut out. There have been some advances toward diagnosing endometriosis outside of surgery: transvaginal ultrasounds can pick up on suspected endometriomas, a type of ovarian cyst filled with old blood, while pelvic MRIs read by radiologists with specific training can detect suspected growths. But both techniques usually rely on the patient having a severe spread of the disease known as Deep Infiltrating Endometriosis, referred to, helpfully, as “DIE.” This means that patients still turn to surgery for confirmation. All told, the average time from onset of symptoms to a confirmed diagnosis is over seven years.
Seven years is a long time. In the absence of clarity or relief, what’s a patient in pain to do? Recently, a cottage industry operating mostly on social media has sprung up to address this longstanding lack, offering advice and services to thousands of sufferers who turn to the internet for answers. On Facebook, there is Nancy’s Nook, a two-hundred-thousand-member private group run by a retired nurse named Nancy Petersen—the “Nancy” referred to in the Endometriosis Summit video—who maintains an elite list of personally vetted “Nook surgeons.” Then there are the surgeons themselves, who sometimes comment on Facebook support pages, or, like Vidali, entice people via Instagram. Many of these self-identified “endo specialists” are out-of-network, which means the cost of their procedures is often out-of-pocket, without a guarantee of diagnosis. Or of relief: the recurrence rate of endo tissue after surgery can be as high as 67 percent, yet some surgeons promote their operations as a panacea in jaunty posts and videos. The incentives of social media have collided with the complexity of endometriosis to create an environment rife with false promises and conflicting information.
A Message from Below
Last February, I went to the ER with a painful sensation in my abdomen. It wasn’t the first time: in 2020, I had felt that same pain for a week and ignored it—until I couldn’t. After fainting twice, I was taken to Woodhull Medical Center in Brooklyn, where I wound up having emergency surgery for a burst, hemorrhaging ovarian cyst. The six-day hospital stay included two stints in the respiratory ICU: one when I went into acute respiratory distress following my operation, the second when my lung partially collapsed shortly after.
The world of endo social media soon proved to be as uncomfortable as it was revelatory.
Years later, I’d learned my lesson about ignoring abdominal pain, so this time I insisted the ER do an ultrasound. The notes from my visit read, “traumatized by her history of hemorrhagic cyst.” But after agreeing to humor me, the imaging technician found a “5.7cm x 4cm avascular left ovarian lesion with sonographic appearance of an endometrioma.” In 2020, I had been told that sometimes freak cysts just burst and leave you internally bleeding, with the oxygen levels of someone on their way to organ failure. This didn’t seem right, but I left it alone. Beyond going on hormonal birth control, which I didn’t want to do as it can trigger mood swings, there wasn’t much I could do anyway.
This time, I messaged Laura, a woman on X who posts frequently about endometriosis. She is a moderator for an endo board on Reddit with more than fifty-nine thousand members and prefers to go by a pseudonym so she’s not identified on the forum. I sent Laura a screenshot of my after-visit summary and said, “I’m wondering if I have some minor endo vibes.” Thus began an online friendship that helped me navigate the confusing world of endometriosis. Laura, who had experienced classic symptoms of the disease since her early teens but was only formally diagnosed in 2019, told me it’s incredibly rare to have an endometrioma without having endometriosis. So I ditched the nurse practitioner who told me my stomach was “too tense” to feel for cysts at my last “well-woman” exam and looked for a reputable specialist.
As I would soon find out, this is easier said than done. Different doctors have wildly different opinions on the best course of treatment, and up-to-date information is hard to come by. “So much of the endo world is based around patient-to-patient grapevine communication,” Laura says. “There is also a lot of infighting, predominantly about misinformation . . . it’s such a devastating, body-wide condition, there are a lot of desperate people scrambling for answers.” As a Reddit moderator, Laura speaks to distressed patients who have often been told by their doctors that surgery would cure them and that any post-op pain they feel is psychosomatic. “Access to good treatment and info is basically entirely reliant on a patient’s energy to seek out the best care for them by talking to other patients,” she says.
While I tried to figure out my next move, my cyst grew until it was the size of a peach. Ovaries are surprisingly small, like almonds, and the physics of a large cyst attached to one are untenable. For five months, I inwardly referred to ovulation as “pain week.” The cyst was on my left ovary, and for several days it was like someone had stabbed that side of my stomach, turning the knife every twenty minutes or so. The pain usually peaked at night, and I’d often fall asleep at 3 a.m. pressed against a blue electric heating pad. I even splurged on an expensive period tracking app so I could at least plan around pain week.
Woodhull’s notorious reputation had not abated since 2020, so when it became clear I needed a second surgery, I wanted the best. To find it, I turned to Nancy’s Nook. But the surgeon I consulted with was booked out six months in advance. Waiting that long sounded like hell, so I ended up going with a surgeon who was available in six weeks. She was not on any fancy list—she even had some negative reviews on Google for her allegedly brusque nature—but she answered my many questions over Zoom, specialized in excision, and, most importantly, accepted my insurance. My copay would be $300. Compared to other surgeons who charge thousands for the same procedure, this affordability was almost unheard-of.
My impatience turned out to be for the best, as my surgeon determined I had DIE, that charming acronym. There was also another cyst on my right ovary, and my organs were stuck together by endo tissue like a bunch of melted candies that had been left in the car. I had “kissing ovaries,” a cute name for two organs that are meant to float on opposite sides of the body. She gave me some printout pictures of my insides, and the sight of all the tissue, lines of toffee-colored substance twisting around my organs, validated what had seemed so abstract.
After my diagnosis, I started frequenting endo forums, poring over studies, reading dozens of posts in Nancy’s Nook, and looking at the Instagram pages of providers like Sarrel and Vidali. I noticed that there was an almost dogmatic insistence on the importance of finding the best surgeon, and a belief that you could cure endometriosis if it was excised properly. Even more alarmingly, I realized that some of the people pushing this narrative in online communities were surgeons themselves. Vidali, for example, frequently posts videos where he asks people who the best endometriosis surgeon in the world is. They inevitably reply, “Dr. Vidali is the best endometriosis surgeon in the world!” While connecting with another patient online had helped me solve the puzzle of my own pain, the world of endo social media soon proved to be as uncomfortable as it was revelatory.
By Nook or by Crook
In 1985, while working at an Oregon hospital as a nurse, Nancy Petersen caught part of a lecture on endometriosis by Dr. David Redwine. At the time, he was investigating the removal of endometriosis tissue from organs, rather than the standard treatment of removing the organs themselves. Petersen had experienced lower back and left leg pain, as well as acute abdominal pain, since she was a preteen. In the 1960s, when she was in her twenties, Petersen had a complete hysterectomy, along with surgery on her lower back, but the pain continued. She described the next two decades on the Nancy’s Nook website as such: “My back and leg pain wore a hole in my mind, my soul, my life. Sleep came in 20-minute parcels.” Intrigued by Redwine’s approach, she asked him to present his research at her hospital. The two eventually developed a joint venture to create “the first laparoscopic excision program for endometriosis in the US and perhaps the world,” according to the official Nancy’s Nook website. Redwine operated on Petersen, discovering extensive endometriosis; she claims that a “complete relief of pain followed” the excision.
She anticipated pain relief, but it always came back.
After retiring in 1996, Petersen spent many years advocating for excision surgery. She created Nancy’s Nook around 2012. (A year prior, Redwine was disciplined for a relationship with a long-term patient; he occasionally posted in the group and served as a moderator from 2019 until his death.) While it purportedly exists to spread awareness and share information, Nancy’s Nook is not an open forum. It is a heavily vetted private Facebook page. You must agree to several rules before being allowed in, and people seem to get kicked out an awful lot. Once you’ve been approved, though, the page is a goldmine of resources, including research papers and the holy grail, a PDF list of surgeons approved by Petersen. The list is global but favors those who do excisions. A second PDF clarifies that the aim of the list is to stop the revolving door of ineffective operations.
No doubt the group was started in good faith. Petersen, who describes her former self as “meek,” wants others to share in her relief. But the abdomen is a fragile part of the body, and not all those who take Petersen’s advice are able to replicate her results. In 2018, a woman named Yvette Marie drove four hours to see a venerable Nook surgeon; she’d been told about the group when doctors first suspected she had the disease. Several years after her excision surgery, her bladder feels like “barbed wire,” she goes to the bathroom every hour, and she is on disability. Yvette, who doesn’t want her last name mentioned to avoid being tracked down by Nook evangelists, was diagnosed with DIE by her Nook surgeon. She suspects her nerves were damaged in the process, but she doesn’t want another surgery, as the first left her traumatized. Seeing Nancy’s Nook hailed as a godsend for patients bothers her, since her own surgeon barely listened to her complaints after the operation.
This frustration reached a boiling point, she says, when Petersen asked the group to relay their experiences with dismissive doctors. “What Nancy wanted was for us to basically roast every doctor except her beloved experts. But in my naivete, I made a comment and said, ‘My Nook surgeon validated me until I had post-op problems.’” Yvette had supposedly disobeyed the rule of negative feedback needing to be “factual, neutral” and was kicked out, with Petersen personally messaging to admonish her for being sneaky. Upon the advice of her therapist, Yvette created a Facebook page of her own called The Truth About Nancy’s Nook to find others who’d been dissatisfied with their experience. “I expected maybe five or six people to say, ‘Oh yeah, my surgery didn’t go well,’ and then I could talk to them and heal,” she says, but “things kind of escalated.” Her group now has over five thousand members.
Another patient who had a disappointing experience with a Nook surgeon is Emma, who prefers not to disclose her full name. In 2022, she was diagnosed with endometriosis and had the tissue excised. “The surgeon herself made me believe she had excised it all,” says Emma, who lives in Ohio. “She promised I’d have no issues with infertility and conceiving even months down the road.” But three months later, her pain persisted. The only treatment option presented to her was birth control. “I felt abandoned and as though my case was too complicated for her, even though I was made to believe she was a specialist in endometriosis.” When Emma posted about her experience in Nancy’s Nook, she says the comments were turned off. Petersen messaged Emma late at night saying she needed to contact her doctor directly. This kind of response can be shocking to people who have been repeatedly invalidated in medical settings, especially on a page that is supposed to do the opposite. “I literally just hate seeing other women belittled by [Petersen] and whoever else is a part of the cult,” Emma says. “It’s sad, especially when those with endometriosis are already struggling greatly.” In an email, Petersen told me that negative experiences can be posted, but not “assassinations.” “We ask patients to discuss their concerns with the doctor involved first, but we do not deny the right to post. Those who say that have an agenda and continue to misrepresent the policy. . . they continue to undermine the work we try to do helping patients find answers.”
Yvette understands why people put so much trust into communities like Nancy’s Nook, and why turning away from them can be difficult: suffering from endometriosis can be a profoundly destabilizing experience. It’s easy to feel suicidal when you’re grappling with the lack of autonomy that comes from having to schedule your plans around pain, the prospect of an incurable lifelong condition, and the added pressure of potential infertility. “Usually you’re very desperate for help,” she says. “When you find a group like this that says, ‘I know what’s wrong with you, this is your diagnosis, and this is what you need to do to be cured,’” she continues, “it’s hard to be scrutinizing; it’s hard to see what the red flags are. It looks like a complete miracle.”
Rayne Thoman, a thirty-eight-year-old nurse based in Buffalo, New York, wanted to believe. When she was twenty-four and in nursing school, she started experiencing pain in the left side of her abdomen after sex. Suspecting it was endo, she underwent an exploratory laparoscopy involving ablation, but her pain came back a couple of months later. That was when she stumbled upon a talk by the TV personality and former Top Chef host Padma Lakshmi, who insisted that pain is not normal. She praised her surgeon Tamer Seckin for relieving her endometriosis with excision. “When I saw that talk, I was like, okay, that’s what I need,” Thoman remembers.
She ended up traveling to another state to see a surgeon on the Nancy’s Nook list. With financial help from her parents, she had excision surgery twice with the new doctor. She anticipated pain relief, but it always came back. In 2016, the pain started radiating down her left leg. And upon reviewing her notes, Thoman realized the pathology reports never actually confirmed endometriosis. “None of this was working,” Thoman said. “I was just done.”
In 2021, Thoman started working for Dr. Robert Tahara, a vascular surgeon who specializes in a little-known disease called May-Thurner syndrome, which occurs when the right iliac artery, which runs through the pelvis, compresses the left iliac vein, disrupting blood flow—sort of like a hose with a kink in it. At a work conference she attended with Tahara, Thoman met a woman who specialized in vascular conditions and chronic pelvic pain. Both professionals began to suspect what Thoman had was actually May-Thurner. But by then, she says, she had brainwashed herself: “Maybe I had microscopic endometriosis. Maybe [because] I had all these surgeries, I had adhesions.” (Laparoscopic surgeries can cause pelvic adhesions, which are bands of scar tissue that make surfaces stick together.) Thoman was resigned: “This is just your cross to bear, you’re going to always have this pain. It is what it is.”
But six months after that conference, she had an ultrasound done at work. Sure enough, she had May-Thurner. Thoman, who was also diagnosed with Postural Orthostatic Tachycardia Syndrome, had a stent put into the vein[*] in her pelvic area and hasn’t had pain since. She remains shocked that she wasn’t screened for May-Thurner before undergoing multiple procedures, supposedly with one of the best endometriosis surgeons in the country. “Why are they not recognizing other sources of pelvic pain? And just continuing to do all these surgeries?” she wonders.
Tahara sees a high percentage of patients who had surgery for suspected endometriosis but in whom ultimately none was found. “If all you got is a hammer,” he says, “everything starts to look like a nail. And I think for a lot of these women, what ends up happening is they undergo an excision for endometriosis, and they don’t get relief—well, you must need more excision.” Tahara doesn’t think that everything going on in the endo community is unhelpful, and he acknowledges that, given the nature of his work, he doesn’t get to see the patients who had surgery and got better. Still, he finds the online conversation limiting. “This concept, this Nancy’s Nook nonsense, is like, we have to go to an excision specialist and just keep getting stuff whacked out.”
Hapticked Off
Shawn Tassone, a Texas gynecologist with fifty-five thousand Instagram followers and host of the podcast Confessions of a Male Gynecologist, likens the sometimes divisive world of endo social media to Republicans and Democrats. Facebook groups like Nancy’s Nook are nervous about spies from other endo communities, he says, so “it’s kinda become this clandestine thing.” That attitude sometimes trickles down into individual surgical practices.
“Haptic means: Only my experienced hands and my instruments.”
The Center for Endometriosis Care (CEC), which hosts Nook-approved surgeon Ken Sinervo, has an extensive social media policy for prospective patients. The form starts by clarifying that it’s not an NDA: “We have never had any mechanism in place either serving as or resembling an NDA.” What follows, however, sounds a lot like a long-winded version of an NDA: among other stipulations, patients cannot post anything defamatory or libelous about the care they receive at CEC. They are forbidden “to share confidential pricing information of any party,” which limits patients’ ability to compare the pricing of different surgeons among themselves—even in their own social media support groups.
However much they might want to muzzle their patients from posting about costs or their negative surgical experiences, many surgeons are happy to use social media for self-promotion. A March 2019 post from Sinervo, who frequents multiple endo support groups on Facebook, is typical of his online tone: “As I sit here and try to think of something inspirational to write,” he shared, “I am grateful to those who guided and mentored me to dedicate my professional life to treat women with Endo. . . . There are literally thousands that have had their lives returned to them.” He ends the post noting, “It’s funny. Someone asked me if I was retiring!! Retiring!!!! That is crazy. I am at my peak in terms of treating my endometriosis patients.” He has also posted to express how “blessed” he is; to clarify information about wait times at his clinic; to give medical advice; and to suggest prospective patients submit records to his office for review.
Some doctors claim that their robust social media presences are not mere advertisements but in the interest of the greater good. Dr. Masahide Kanayama, who does not have the imprimatur of Nancy’s Nook but has been specializing in endometriosis for twenty-eight years, has nearly a hundred thousand followers on his Instagram page, “@newyorkendometriosis.” “My purpose of the Instagram is that there is so much misinformation in the endo community,” he insists. “I decided to teach people and share the correct information.” Specifically, Kanayama argues that excision surgery is risky when performed with the da Vinci, a robotic instrument controlled by the surgeon via console. (You may remember it from when the device went viral for doing “surgery on a grape” in 2017.) Kanayama says that because the robot lacks the ability to feel organs with human hands, it leaves surgeons to rely on their “imagination.” He claims to have developed his signature “haptic technique” many years ago. A typical Instagram story depicts a hand wearing a surgical glove, overlaid with the text “Haptic means: Only my experienced hands and my instruments.” After our interview, Kanayama emailed me with an offer to talk to one of his patients. A follow-up message contained a surgical photo of a patient’s uterus that he recently operated on.
Tassone says that the da Vinci does give tactile feedback, and it has what are called “articulating joints,” so that “when you articulate your fingers with the da Vinci, you can get around corners, you can do more microscopic dissecting.” (Full disclosure: my recent surgery was done via da Vinci.) Kanayama’s Instagram stories have tapped into a subset of people with recurring endometriosis who are frustrated when tissue is left behind or returns after prior excision surgeries. (Petersen maintains that only a small subset of patients who’ve had “expert excision” have their endo recur, claiming that surgeons who excise “properly” believe their true recurrence rates are below 20 percent.)
Kanayama’s posts also touch frequently upon infertility. A recent Instagram story showed a positive pregnancy test: “One of my ‘most difficult’ stage 4 endo patients is now pregnant naturally after my excision! A miracle happens after the right haptic treatment! Dr K.” Concerns about infertility can be exploited by endo surgeons, and not just online. Reddit moderator Laura, who is based in New Zealand, says there is one local surgeon who is notorious for being predatory, something she’s experienced firsthand. “She’s an amazing surgeon, but she also runs a fertility clinic, and she often exaggerates her patient’s situation post operatively to spook them into signing up at her fertility clinic,” Laura says. “She did it to me when I was barely out of fucking anesthesia.”
Such behavior might sound surprising coming from a supposed expert. But the title, ultimately, doesn’t mean much: because endometriosis is so poorly understood and treatments are very much in their infancy, Laura says, there is no official regulation of who is an endo expert. “These titles are more of a ‘if it quacks like a duck’ situation.” Yvette, founder of The Truth About Nancy’s Nook, puts it more bluntly: “You’re a doctor, not an influencer . . . ego and public image is taking priority over actual skills and results.” The site ICareBetter, set up in affiliation with Nancy’s Nook, has tried to cut through some of the noise generated by the online endo community. Surgeons can upload videos of their excision surgeries for $400 a pop, and other physicians review the videos to determine if they are expert enough. If the answer is yes, the surgeon gets placed on the website’s directory. Still, it’s hard to know who to trust.
Operating on Faith
During my excision surgery last year, the surgeon removed my alien of an endometrioma and excised a lot of tissue. But she had to leave a small bit of it behind because it was in an area she didn’t feel comfortable operating in. Like many people I spoke to for this story, I’ve been left with a nagging question: Will I have to go under the knife again and again? My doctor says only if I have symptoms, and I’m inclined to agree with a more hands-off approach. Still, there is a part of me that knows that, after the past four years, I will probably need surgery at least once more in my life. For now, I am on a progestin-only birth control to ward off any future cysts and slow down the likely inevitable regrowth of endometriosis tissue, which I like to imagine as double-sided sticky tape. It was recommended I take a medication that induces early menopause because it reduces the creation of estrogen, which encourages endo tissue to grow, but I wanted to try my luck with birth control first.
And luck, really, is what diagnosing and treating endometriosis so often comes down to. Even if you have the best insurance in the world, even if you religiously schedule your annual gynecological exams, there’s no guarantee your rushed doctor will pick up on what is happening inside you or have the skills to provide you with relief if they do. There’s no guarantee even when being treated by a surgeon who proclaims they are the best—though you might get a post-op selfie out of it for the gram.
When Emma posted about her experience in Nancy’s Nook, the comments were turned off.
Of course, a curated social media presence doesn’t translate to a bad doctor. Ultimately, the surgeon-influencers and contentious patient groups like Nancy’s Nook are symptomatic of a broken health care system, especially in the United States. The lack of robust research and training around endometriosis has created conditions that allow individual providers to achieve cult status, while treating health care as a market incentivizes doctors to think of themselves as proprietors and their patients as potential customers. And while social media might contribute to the spread of false or oversimplified information, these posts can still be helpful—if you mix them all together in your head and manage to wring out the truth.
Even in countries with socialized or semisocialized medicine, like New Zealand, where I’m from, the prospects for endometriosis patients aren’t necessarily better. Waitlists for surgeons can stretch as long as a year, and this is a disease that needs prompt treatment. Looming above all that is the way we are socialized to minimize women’s pain. Study after study has shown that women on average wait longer to receive treatment for acute pain than men and are also less likely to be prescribed painkillers, disparities that are even more pronounced for women of color. Misguided beliefs that women are naturally better at tolerating pain, or more likely to exaggerate it, are endemic. For a long time, I felt that way myself. When I was in high school, a woman came in to talk to us about endometriosis, and after, a girl at my school was diagnosed with it. I had severe menstrual cramps and regularly spent most of the day before my period in bed. I still didn’t make the connection because I believed that my experience was normal. Wow, I thought, when the news of my peer’s diagnosis was passed around. She must be in so much pain.
[*] Correction: An earlier version of this essay incorrectly stated a stent was placed in an artery.