Roughly ten percent of reproductive-age American women suffer from endometriosis, a disease where tissue similar to uterine lining grows outside the uterus. The tissue is most commonly found on the ovaries, fallopian tubes, and pelvis, but it can spread to the intestines, cervix, rectum, bladder, vagina, diaphragm, and even the brain. Women with endometriosis are burdened with a wide range of seemingly unrelated symptoms: menstrual pain, fatigue, difficulty urinating, constipation, infertility, uncomfortable sex, nausea, and brain fog. But perhaps their most difficult battle is with the medical establishment, not their own bodies.
About 6.5 million American women and girls are among the 190 million who suffer from endometriosis globally, but doctors rarely diagnose and treat it properly. Since fatigue and uncomfortable sex are not obviously correlated, women see a wide range of specialists who struggle to associate the symptoms. The tissue cannot be detected on most imaging tests, so women with the disease wait an average of 3 to 11 years before being accurately diagnosed. There are two forms of surgical treatment for the condition: excision, which removes the lesions entirely, and ablation, which burns the surface. Ablation is hardly a treatment, since the lesions easily grow back, but doctors are incentivized to perform that method because it is economically advantageous under the uniform medical billing code, and the excision surgery requires mastery of technical skills. Tragically, more consequential and less beneficial methods are also administered: over 100,000 hysterectomies are performed each year for endometriosis in the United States, even though such procedure is ineffective because the disease is characterized by tissue growing outside the uterus.
Women with endometriosis have been misinformed, mistreated, and misdiagnosed by the medical establishment for years. Their pain is not merely physical, but psychological as well. Over time, many women have lost their sense of identity, and even their will to live, as they grappled with crushing self-doubt and despair.
Now, they’re fighting back—and they’ve found a meaningful identity in their suffering.
They call themselves “endo warriors.” These women, who often do not have formal medical training, have become valuable resources for guidance and effectively replace the supposed “experts” who are routinely unhelpful. They are dedicated to improving the understanding and treatment of endometriosis.
In a society that disregards menstrual health, this is a radical project. Although the United States has long debated “reproductive rights,” shockingly little attention is given to common reproductive disorders. Menstruation is widely perceived as a gross, unnecessary nuisance to be dominated—hence birth control—even when it is functioning properly. Ubiquitous prescription contraceptive drugs obscure symptoms that can be valuable indicators of illness, while diseases like endometriosis remain untreated and worsen.
The medical establishment—and our society more broadly—has subverted women’s “reproductive health,” redefining it to mean the absence of reproductive health. This leaves the warriors with the difficult task of encouraging menstrual awareness in a culture that would prefer to eliminate the menstrual cycle entirely.
Avery’s Story: From Suicidal Ideation to Social Media Activism
“I grew up thinking that being in pain was normal. And it’s not,” said Avery Preston, age 20. Avery has endured horrendous periods since age 13 and began two different forms of birth control while in high school. When the pain became unbearable, a doctor diagnosed her with an STD-related disorder, even though she had recently received a negative test for STDs. Finally, in July 2021, Avery was formally diagnosed with endometriosis. She was prescribed the highest dose of Orilissa, a drug that can alleviate the pain from moderate or severe endometriosis. But Avery wasn’t told that Orilissa induces early menopause.
“I had hot flashes, suicidal thoughts, night sweats, insomnia, and joint pain. It became harder to get out of bed in the morning,” Avery remembered. These side effects were not unique to Avery: Orilissa warns that it can cause “suicidal thoughts, actions, or behavior, and worsening of mood,” and in clinical trials, one participant committed suicide. Yet Avery only learned about these documented side effects after she discovered online forums, blogs, and social media pages of endo warriors who share their health journeys, scientific information, and advice.
“I was on it for two months, then thought this drug didn’t work for me, because I’m usually a super happy person and I felt like killing myself,” Avery said. She stopped Orilissa and switched to birth control, which only worsened her symptoms, so she began Orilissa again. Avery was deteriorating mentally, physically, and emotionally, but family members and friends insisted she was “doing it for attention.” She withdrew from school and finished her degree online from home.
In March 2023, Avery underwent surgery for stage four endometriosis. Yet she felt awful for weeks afterward. After badgering doctors and multiple visits to the ER, the surgeon admitted that she hadn’t removed all of the extra-uterine tissue. After an MRI months later, Avery learned that endometriosis had infiltrated her bowels, and her fallopian tubes are wrapped around her pelvic sidewall. Avery had a second surgery in November with a different doctor—one she rigorously verified was a competent excision surgeon, with help of endo warriors. During the eight-hour-long procedure, the surgeon excised endometriosis from her reproductive organs, bowels, and diaphragm, and further removed her fallopian tubes, appendix, and a cyst.
Avery is now recovery from the surgery, and she continues to find refuge in the online endo warrior community through her Instagram page that documents her health journey, although she admits “it’s hard to be so vulnerable.” She’s received messages from childhood friends saying that they are now getting treated for endometriosis after seeing her colorful infographics. Her younger sister says fellow high-school girls have learned from the account, and they wonder why they hadn’t been taught about endometriosis when learning about their periods.
“I really wish I had known about the thousands of other women who have endometriosis before I was twenty-years-old, but I’m thankful now that I do,” Avery said, adding that “there are so many people that want to fight so hard for change.” She imagines that her advocacy will continue throughout her life; she wants to found an organization and deliver talks at schools.
Susannah’s Story: Over Twenty Years of Nameless Suffering
While Avery is sharing her ongoing medical treatment, other endo warriors share their journeys only after they’ve been treated. Susannah Kautz, 38, experienced heavy bleeding, diarrhea, nausea, and fainting when she began menstruating at age 13. She saw an OBGYN at age 16, who said the symptoms were “normal.” Her doctor encouraged her to take birth control, but she delayed starting the medication until she turned 18. Her condition worsened, but doctors never found anything concerning on ultrasounds, colonoscopies, and endoscopies.
“I had rectal bleeding with every period. The gastroenterologist told me I was just confused, and it was period blood,” Susannah said. “It was infuriating. I knew the difference.” She had rectal endometriosis—but she didn’t know it yet. In her twenties, she asked doctors for a hysterectomy, and she was told she needed to wait until after marriage to make that decision. (That procedure wouldn’t have helped anyway, since the tissue grows outside the uterus.) Over the years, Susannah was prescribed over twenty different drugs that made her “gain weight and feel like crap.”
“Females dismissed me, never took anything seriously, and made comments about this being psychological. They were focused on toughening up, and said this is a normal part of being a woman,” remembered Susannah, who saw only female OBGYNs. She found herself surrounded by contradictions: her period was supposed to be painful, yet her pain was apparently imaginary. “I was told by every doctor I saw that it was a manifestation of the trauma from losing my brother and dad within a short period of time. But I had pain prior to that,” Susannah said. The unending denial of her physical pain aggravated her psychological condition: “There were times I felt so desperate and isolated, it seemed like death would be easier.”
Susannah was finally taken seriously after she married at age 34 and reported that she experienced pain during sex. The doctor then suspected Susannah had endometriosis and suggested the only available pharmaceutical treatment: Orilissa. But Susannah, whose father had worked in a pharmacy, thought early menopause sounded “sketchy.” She began searching online for answers and found the endo warrior blogosphere, where many social media profiles are ornamented with the symbolic yellow ribbon. After reading testimonies about women’s treatment and recovery, she scheduled an appointment with her first male OBGYN, who discovered a uterine deformity on an MRI scan. The deformity should have been detected on her previous ultrasounds; if a doctor had detected it, she was never informed about it.
Over twenty years after first raising concerns to an OBGYN, Susannah underwent excision surgery to remove stage two endometriosis from her fallopian tubes, bladder, abdomen, pelvic wall, uterosacral ligament, and rectovaginal fistula. Doctors also corrected the uterine deformity. But since Susannah’s scans hadn’t detected endometriosis, she didn’t know if she had the disease when she was strapped onto the operating table. “The first thing I did when I woke up from anesthesia was say, ‘did they find anything?’ And my husband said with a big smile on his face, ‘They found it!’” Susannah recalled.
“It was such a life-changing moment for me to know that it was in there, and I wasn’t crazy, because I really felt like I questioned my own sanity and toughness for so long, and nobody could verify that there was something wrong with me,” Susannah said with tears. “I just fell asleep. I was in so much peace.”
Now, Susannah is an active endo warrior on social media, and she’s considering becoming a certified patient advocate to assist other women. “Ever since finally getting a diagnosis, I feel like I have to tell the world what I’ve been through, because I feel like it could help other people,” Susannah said. “I have to talk about it, because that would have helped me so much.”
Veronika’s Story: Scholarship and International Advocacy
Some endo warriors raise awareness on social media, while others have channeled their suffering into scholarly pursuits. They want to educate women, but they also want something more transformative: new policies.
When Veronika Denner was an 18-year-old freshman at Yale University, she woke up sweating one night with stabbing pain in her pelvis and right upper abdomen, yet the school’s doctors insisted that “everything was normal.” In December 2021, Veronika “deteriorated” and she “couldn’t get out of bed anymore.” Her symptoms had spread to her digestive and urinary tracts, but the gastroenterologists and urologists said she was merely “bloated.” “I typed in all my symptoms: stabbing pain, barbed wire pain in the pelvis, heavy periods. The first thing that popped up was endometriosis.”
“Google knew from the beginning,” she said. “So the knowledge is out there, it just doesn’t seem to be at any doctors’ offices.”
In March 2022, Veronika took a medical leave of absence, because the pain prevented her from studying. Once she was home in Vienna, she deliberately went to a doctor who would confirm her “suspicions.” Her self-diagnosis was confirmed—but not properly treated. She underwent a “botched” surgery in Austria, then a second operation in Romania, where the surgeon neglected to remove the endometriosis in her diaphragm. Today, she doesn’t experience digestive and urinary symptoms, but she still has pain between her ribs.
Veronika returned to college in January 2023. She was more than an undergraduate student; she was an endometriosis advocate. She organized a screening on campus for the endometriosis documentary Below the Belt, which garnered roughly fifty attendees and was covered by the student publication. She began the Instagram account “Miss Endo-It-All” to raise awareness, and she now works for the European-based organization End Endo Silence. Multiple women on campus have told Veronika that they’re now getting treated for endometriosis due to her activism. Now, she’s writing her senior thesis about “structural issues in endometriosis care at Yale and beyond,” ranging from students’ experiences to vague insurance policies. She’s also considering pursuing a degree in public health to focus on women’s issues.
The Underlying Problem
The warriors are aware that the widespread mistreatment of endometriosis is not unique. Rather, it emerges from a much larger problem: contraceptive medication is seen not only as a cure for endometriosis, but for menstruation entirely. The liberal prescription of birth control and the normalization of period pain leaves women wondering how much pain is abnormal, doubting themselves, and deterring appropriate care.
Anna Person would pass out when menstruating, resulting in trips to the ER, where she was given Motrin. She visited eight different OBGYNS—seven of whom were female—from her first period at age 13 to age 18. “Their only solution was birth control,” Anna said. “They always said, ‘that’s just how it is, that’s how periods are, that’s just what we have to deal with as women, it’s normal.’”
At age 15, Anna began skipping the placebo pill week of birth control by the doctor’s orders, yet she still got a period and felt like a “mental case.” An OBGYN suggested Lupron, a chemical castration drug given to pedophiles for curbing desire and to minors for suppressing puberty. Yet Lupron’s manufacturer warns that even a low dose of the drug should be limited to one year, because it causes bone density loss that “might not be completely reversible.” Additionally, the drug can induce early menopause. In clinical trials, more than 10 percent of patients experienced hot flashes, headaches, depression, decreased libido, nausea, and vaginitis. A whopping 98 percent of participants with endometriosis ceased menstruation after two months. Anna decided to decline the Lupron and continue to endure the pain.
Eventually, Anna was diagnosed with endometriosis at age 17, but she was too nervous to undergo surgery. Thankfully, Anna — who is now 24 — found alternative treatments. She adopted a range of lifestyle changes — avoiding fragranced products, eating more protein, improving her sleep schedule, switching to organic feminine hygiene products — that alleviated her pain. Today, she has “symptomless periods.” Anna hasn’t ruled out surgery entirely, and she will consider undergoing the procedure if she faces infertility. Now, she educates her nearly 14,000 social media followers about women’s holistic wellness, including guidance on managing endometriosis.
“The problem may be that we go to OBGYNs in the first place. Why is it our first reaction to see them for period pain, when clearly they don’t treat it? They just prescribe a pill,” Anna said, noting that she visits a chiropractor and naturopathic practitioner regularly. “We’re being medicated with a drug that has the side effect list the size of a blanket.”
The endo warriors will continue to fight for improved treatment of endometriosis. Reforming the medical establishment has proven difficult, so many focus on empowering women with the knowledge to advocate for themselves. For too long, women with the disease have gone unheard by their doctors. Or, if they were heard, they were summarily disregarded as unserious. Now, they’ve found a community—indeed, an army—of vulnerable and courageous women who offer support.
Still, advocating for endometriosis care is one battle in a much larger war. These warriors are up against a society that pathologizes femaleness itself and medicates women just for being women. A healthy female reproductive system—with its regular monthly cycle of ovulation and menstruation—is seen as an illness. Yet the disease of endometriosis is routinely dismissed as normal, in spite of the debilitating pain it causes.
The warriors want a radically different world: one that treats female reproductive disorders without treating female reproduction as a disorder.
