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A surgery exists that can help to eliminate the excruciating pain caused by this condition–but many medical professionals don’t even know about it.
Like many women with endometriosis, Yoruba Mutakabbir, Ph.D., a 43-year-old education administrator at Texas Southern University in Houston, felt let down by her doctors. Each month since her first period at age 10, her belly had bloated to pregnancy size, and her pain was so intense that “it felt like a hot ball” in her abdomen, she says.
Over the years, she was variously told that it was “just cramps” and to take ibuprofen, prescription narcotics, or birth control pills, none of which helped. Mutakabbir was 36 before a gynecologist even mentioned endometriosis and 40 when another recommended a hysterectomy to treat it. She resisted. “I felt pushed against the wall because I was concerned about the side effects. Plus, I knew that hysterectomies are overperformed, especially on Black women,” she says. Endometriosis is a disease in which wayward tissue resembling that found in the uterus forms cysts and lesions—mostly near organs in the pelvis, but sometimes as far north as the heart or the lungs. Some women with it experience extreme pain during menstruation, sex, and/or bowel movements; for others, it leads to an ache that never goes away. An estimated 6.5 million American women, or about 11% of us, are thought to be affected, according to the U.S. government’s Office on Women’s Health, mostly (but not exclusively) in the childbearing years.
Mutakabbir is angry at the ways in which her endometriosis limited her, forcing her to miss social events and to arrange her teaching schedule around her cycle. But she is most infuriated that no doctor told her about a surgery that could—and ultimately did—improve her symptoms dramatically. She learned about the operation, known as excision surgery, two years ago in a social media group for women with the disease. They referred her to a doctor with specialized training, coincidentally just a few miles from her home. When he removed all traces of the disease from her ovary, bladder, and bowels, the results were immediate and dramatic. “From my first period after the procedure, the pain and bloating were gone,” Mutakabbir says.
Excision surgery was first performed decades ago, but doctors don’t tell women about it simply because many don’t know it exists or haven’t been trained to do the procedure, says Nancy Petersen, a retired registered nurse in Gig Harbor, WA, who runs an endometriosis Facebook group, Nancy’s Nook Endometriosis Education. Petersen has looked at the issue from both sides, having been a patient and later aided thousands of women in getting the surgery in her professional capacity. The medical profession, she says, clings to false beliefs about the disease, which means many doctors remain ignorant of effective treatments and women go through unnecessary agony for years.
Getting the word out about excision surgery (which Petersen herself has undergone) has become her and other advocates’ mission—along with debunking these “mythic tales,” starting with what causes endometriosis. The most recent bulletin on the disease from the American College of Obstetricians and Gynecologists (ACOG), intended to keep doctors abreast of the latest information, primarily blames “retrograde menstruation” for the condition. This is a concept, originating in the 1920s, that menstrual blood moving in the wrong direction (up into the body instead of down and out) carries rogue tissue, which it deposits around the interior of the torso. Over time, the theory goes, the endometrial tissue-like growths expand and adhere to organs.
This idea has little to support it and is “the most dangerous theory in medicine,” says David Redwine, M.D., a retired pioneer of excision surgery in Bend, OR (where Petersen was his program director), because it leads to ineffective treatments that prolong women’s suffering. If this seeding of the disease were happening in millions of women, Dr. Redwine wrote in the journal Fertility and Sterility way back in 2002, surely all its stages would have been documented by microscopy (they have not been). And if retrograde periods were to blame for endometriosis, prepubescent girls would never get the disease—but some do. The theory also doesn’t explain how lesions appear on organs as far from a woman’s “plumbing” as the heart and lungs.
A much stronger possibility, postulate Dr. Redwine and other surgical specialists, is that endometriosis begins before birth, when genetic mutations cause stem cells to lay down abnormal tissue that later develops into endometriosis, especially after it is exposed to estrogen.
There are also problematic misconceptions about diagnosis. Some doctors believe that if they can’t feel lesions during an exam or if nothing shows up on an MRI, a patient doesn’t have endometriosis. But the only reliable confirmation is with a tissue biopsy after surgery, says Megan Wasson, D.O., chair of the department of medical and surgical gynecology at the Mayo Clinic in Phoenix, who performs minimally invasive gynecologic surgery (MIGS).
After a biopsy, patients may be misdirected again: Gynecologists are generally taught that endometriosis appears in a laparoscopy as “powder-burn black” lesions. Even doctors who know to perform laparoscopic diagnosis may not know to look for (and biopsy) lesions that are clear, white, yellow, or red. Also, to make a thorough assessment they must point the camera away from the reproductive organs, as many endometriosis lesions appear elsewhere. When a gynecologist doesn’t see evidence of disease where they think they should, they may conclude that the patient doesn’t have it, and the all-too-common phenomenon of dismissing women’s complaints can kick in. “Many of my patients say their prior doctors told them they were crazy,” Dr. Wasson says.
No wonder it takes an average of seven to 10 years for someone to be diagnosed, according to the Endometriosis Foundation of America. Delays are especially common when women have less well-known symptoms such as pain in the bladder, intestines, or shoulder (from tissue growth on the diaphragm), Petersen says. In a study published last year, it took some 600 women an average of 6.3 years from their first symptoms before they got diagnostic surgery. Even after that, the women saw an average of four health care providers in a desperate bid to find relief before finally landing at a specialty clinic.
Then there’s another factor that prolongs women’s pain: Doctors often prescribe medication—particularly birth control—in an attempt to suppress ovulation and reduce blood flow, largely because they’re mistaken about what may cause endometriosis and they believe that it’s nearly always found around reproductive organs. But a Cochrane Library review in 2018 concluded that there is insufficient evidence that birth control pills help, and using them means better treatment is delayed and lesions can keep growing, Petersen says. Other regimens put women into temporary medication-induced menopause to stop menstruation and tamp down estrogen, and there is evidence that this may diminish the pain, but there are serious costs. The drug’s side effects include bone loss, anxiety, depression, hot flashes, and the long-term risk of small vessel heart disease from the suppressed-estrogen state. This is why it is recommended to be used for no more than two years.
If medications don’t ease the pain, surgery is usually the next step—but not the intensive excision procedure advocates say offers the best chance of cure. Instead, some women are told they must have their uteruses removed—the ACOG practice bulletin describes hysterectomy as “definitive therapy for the treatment of endometriosis.” But since the problematic tissue doesn’t typically affect the uterus, many women’s agony persists, Dr. Wasson says. (Some have a related disease called adenomyosis, in which growths occur inside the uterine wall, and hysterectomy may be effective for this condition, she notes.)
Still other endometriosis sufferers are offered ablation surgery that uses lasers or electrosurgical energy devices to burn out the growths. This is a temporary fix at best. “Ablation is like cutting the weeds on your lawn without removing their roots. They just grow back,” says Ann Peters, M.D., a minimally invasive gynecologic surgeon at Mercy Medical Center in Baltimore. Ablation eradicates superficial lesions but leaves deeper infiltrating tissue behind.
Women regularly post about success with excision surgery in Petersen’s group and in Endo Warriors, another Facebook group, cofounded by Jordan Davidson, a 30-year-old writer in Jersey City, NJ. Excision is a complex laparoscopic operation that removes visible disease everywhere it is found, no matter how little there is or how deeply it has infiltrated other organs. “Excision surgery is the standard of care,” Dr. Wasson says. Some women feel immediate relief from it; others who have had the disease for years may require support afterward such as physical therapy to improve pelvic floor dysfunction.
Gynecologists with the best qualifications to perform excision surgery are trained after medical school through a fellowship in MIGS. Petersen’s group, Nancy’s Nook, lists only those who have been recommended by members. Another referral site, I Care Better, includes surgeons and physical therapists vetted by peer experts. Unfortunately, there are too few MIGS-trained surgeons, even though having the surgery done by someone specially trained can make all the difference.
Better doctor training on endometriosis, say advocates and experts, is critical. Dr. Wasson recalls learning a single sentence about it in medical school: “Endometriosis is a gynecological condition that can cause pain.” Gynecologists learn basic laparoscopic techniques, such as for removing ovarian cysts, but many don’t realize that MIGS surgeons with special training use the approach in a more advanced way. “An ob/gyn is phenomenal at routine care, but once you have a complex gynecologic issue, you should see a subspecialist,” Dr. Wasson says. “We hear from a lot of people that their gynecologists feel they have the skills to manage this disease when they don’t,” says Endo Warriors’ Davidson.
High-quality research on excision surgery is also a must: Due to a lack of funding, there hasn’t been a single large-scale randomized clinical trial of the procedure. One small Australian study of 39 women with endometriosis published in 2004 found that 80% had reduced pain and enhanced quality of life after excision compared with 32% of a control group. French researchers gathering data on more than a thousand women with endometriosis in their rectums and colons concluded that the surgery successfully treated nine out of 10. Thanks to pressure from advocates, including former Iowa Congresswoman and endometriosis sufferer Abby Finkenauer, federal funding to study the disease doubled in fiscal year 2021. But the $26 million allocated, they say, is not enough.
Of course, the procedure may not be for everyone, and some women need more than one surgery. Jordan Davidson, who has a rare, aggressive form of the disease, has needed six. And Ted L. Anderson, M.D., Ph.D., ACOG’s endometriosis subject expert, cautions that women who want to get pregnant and who have extensive surgery may risk tissue damage and adhesions that could impact fertility. Petersen, however, says that she hears of many infertile women who finally conceived following surgery. The data on fertility after surgery isn’t definitive, so it’s important that a woman carefully discusses childbearing plans with a prospective surgeon.
What is clear is that for now, women may be their own best advocates when it comes to finding relief. “I’m grateful that those [advocates’] resources are available for patients,” says Dr. Peters. “But it’s a sign of dysfunction in the system, because women should be hearing about this from their doctors,” she says. Until they do, the advocates will keep speaking out. Shannon Cohn, a filmmaker and lawyer in Oxford, MS, produced and directed two documentary features on endometriosis because she wanted to spare future generations the intense GI pain that for decades left her writhing on the bathroom floor. After she had one of her daughters, “I remember holding such a tiny, sweet baby and thinking, I can’t imagine my daughters going through the hellish journey I went through for 20 years,” Cohn says (endometriosis can run in families). “We need to give patients and doctors an accurate base of knowledge if we’re going to stop the suffering from this awful disease.”