Sarah Digby barely remembers her first period, but the third is locked in her brain. She was in a seventh-grade reading class in San Antonio, her feet propped up on the desk chair in front of her, when the pain shot down from her pelvis to the back of her legs. Her feet went numb. She worried she wouldn’t be able to move. She tried to breathe slowly, to stop herself from panicking, while the pain that would define the next decade of her life set in.
As she grew up, Ms. Digby thought she just had “a weird body.” She bled through pads, underwear, sheets. She woke herself up one night, screaming from the pain. “I thought: It must be my fault — I must not know how to control my period the way everyone else does,” she said. In her early 20s, the pain became so intense that she collapsed on the subway and in the shower. She once passed out on a plane, and the last thing she remembered was buzzing for a flight attendant as they prepared to close the cabin door.
It wasn’t until Ms. Digby was almost 27, nearly 15 years after she started menstruating, that she was diagnosed with endometriosis, a chronic condition that affects 10 percent of women and girls, according to the World Health Organization. But the broad range of symptoms and a lack of awareness about how to recognize and treat the disease can prevent patients from getting help. There is no cure for endometriosis, but doctors and researchers are uncovering tools to manage the often debilitating pain that comes with the disease. Without an accurate diagnosis, though, patients like Ms. Digby are left grasping for answers.
When Ms. Digby did seek medical attention, she was told that she might have ovarian cysts, that she might have a sexually transmitted infection and that her intrauterine device had led to pelvic inflammation. She felt “medically gaslit,” she said, until she stumbled across an article about endometriosis and sought out a center in New York, where she lives, specifically designed to treat it.
“We all know the symptoms of a heart attack,” Ms. Digby, 32, said. “Why don’t we know the symptoms of an extremely common disease?”
Why does endometriosis cause so much pain?
Endometriosis comes with a tangled knot of symptoms, many of which are characterized by extreme pain. Painful sex. Painful urination and bowel movements. Menstrual cramps that cause stabbing pain and aches in the abdomen and lower back. Gastrointestinal disruptions, like painful diarrhea and constipation, which patients often confuse for signs of another health issue.
The disease occurs when tissue similar to the kind that lines the uterus, known as the endometrium, grows beyond the uterus and typically implants in the pelvis. When someone with endometriosis has a period, the same biochemicals that cause the uterus to contract also activate the endometrium in the pelvis, which can lead to intense pain beyond the uterus. But the disorder also causes pain between periods. Endometriosis can block fallopian tubes, trapping blood in the ovaries to form fluid-filled cavities known as “chocolate cysts” (because they contain thick, brown liquid) or endometriomas. In rare cases, those cysts can rupture, causing sharp, intense aches. The disorder can also lead to adhesions, bands of scar tissue that cause organs to stick together.
Emerging research is investigating what causes endometriosis and why some people may be more susceptible than others. Studies have shown a link between endometriosis and physical and sexual abuse in childhood or adolescence. Scientists are also exploring whether the disease is hereditary: Though the data is inconclusive, some doctors consider a family history of endometriosis to be a risk factor.
While some women experience symptoms during their first periods, others develop endometriosis later in life. There are four stages of endometriosis, which the American Society of Reproductive Medicine classifies as minimal, mild, moderate and severe, based on the location, amount, depth and size of endometrial implants in the pelvis. More extreme pain doesn’t always correlate to a later stage of endometriosis, said Dr. Monica Woll Rosen, an obstetrician-gynecologist at the University of Michigan Medical School.
“For some people with Stage 4, they never have any pain in their whole life,” she said. “And some people with barely Stage 1 have the worst pain and can’t get out of bed.”
The pain we ignore
Despite patients’ pain, doctors often point to other culprits first before homing in on endometriosis. Most women experience a long delay between when they start to experience symptoms and when they actually receive treatment, said Dr. Kathy Huang, director of the Endometriosis Center at N.Y.U. Langone.
That’s partly because there’s a lack of awareness in the medical community about how the disease manifests and partly because doctors are especially poor at identifying painful gastrointestinal symptoms as potential endometriosis, she said. Patients themselves often dismiss their own pain, shrugging off endometriosis as just a “bad period.”
“Every OB-GYN until I was 28 said, ‘That’s normal, some women just have difficult periods,’” said Lindsey Sorensen, who consistently bled through tampons and pads since she started menstruating at 14. Ms. Sorensen, now 38, once had to go to the emergency room when she got her period at work; her boss found her curled in the fetal position on the floor of her cubicle. She later found out that she had endometriosis so severe that it had reached her rib cage, and bands of tissue had bound together organs in her lower abdomen.
“One of the big barriers to me is that even for me, as a little girl, I was told that painful periods are normal,” Dr. Huang said. “That’s the first myth we need to dispel, that pain is normal.”
And endometriosis can cause pain between periods, Dr. Rosen said, making the condition even more difficult to diagnose.
Nancy Easton first went to a gynecologist as a teenager, at the urging of her mother, who had heard her moaning in bed, doubled over with cramps. Ms. Easton recalled her mother saying, “I don’t think I was in this much pain when I gave birth to you.” The doctor never said the word “endometriosis,” Ms. Easton remembered, but prescribed her a hormonal birth control pill, a common tool to alleviate pain in women with the condition. It didn’t work. Desperate, Ms. Easton tried to lessen what she called “unbelievable pain” with any alternative, including an opiate that her grandfather was prescribed after surgery, and handfuls of vitamin E supplements, which she had heard could be used for pain relief. In her 20s, she tried telling a doctor that she believed she had endometriosis; she told Ms. Easton she could try taking five Ibuprofen every 12 hours. She was skeptical about taking so much medication, but the drugs blunted her pain.
“That’s when I quit complaining,” she said. “That’s probably what prevented me from getting a diagnosis.”
In her 50s, Ms. Easton learned that she had ovarian cancer, and had a hysterectomy. Studies show that endometriosis is associated with developing ovarian cancer, although the risk of cancer is still low. Ms. Easton thinks that if she had pushed for a diagnosis and treatment of her endometriosis, she might have been able to avoid the cancer and hysterectomy.
“I actually prided myself on not being a wuss,” she said. “I thought that it was just pain and that I just had to deal with it.”
How to treat pain from endometriosis
While there is no cure for endometriosis, doctors say that there are options for treating the disease.
“Anyone who has pain should at least have a tentative diagnosis,” said Dr. Tommaso Falcone, a professor of obstetrics, gynecology and reproductive biology at the Cleveland Clinic Lerner College of Medicine. “Pain is a signal to us that something’s going on.”
The only way to effectively diagnose endometriosis is through laparoscopy, a surgery that involves a small incision in the abdomen. During the procedure, doctors may also remove or cauterize endometrial implants. But patients are often reluctant to get the surgery, Dr. Falcone said, and ultrasounds and M.R.I. imaging can often confirm the presence of cysts or extra tissue.
Most endometriosis patients are prescribed birth control — typically the pill, a patch or a vaginal ring, but sometimes a hormonal IUD. These hormones reduce estrogen and slow the growth of endometrial tissue, helping to reduce pain.
Some research shows that acupuncture may alleviate pain from endometriosis. And physical therapy, particularly pelvic floor therapy, can also be a critical tool to help ease the cramps that ensues when pelvic muscles contract during the menstrual cycle.
“We shouldn’t just be able to offer the knife or drugs when there are other people in the medical field that can help,” Dr. Falcone said.
Some studies suggest that lifestyle changes can help manage endometriosis pain. A 2012 study found that women with endometriosis reported reduced symptoms after adopting a gluten-free diet. Eating anti-inflammatory foods like fruits and vegetables and limiting sugar and caffeine may help with pain, other studies show.
Experts urge patients who suspect that they have endometriosis to seek out second opinions. “If the physician they’re speaking with is not taking them seriously, or is just making an offhand comment, it’s really important to find someone who will hear you,” Dr. Huang said.
It’s critical that people grappling with intense period pain acknowledge the severity of their symptoms, Ms. Digby said. Even now, in remission, she’s still trying to accept that she wasn’t overreacting, she said. “I was completely in the dark,” she said. “I really thought it was just me being dramatic.”