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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, feet propped up on the desk chair in front of her, when pain shot up from her pelvis to the backs of her legs. Her feet went numb. She worried that she wouldn’t be able to move. She tried to breathe slowly to keep from panicking as the pain that would define the next decade of her life set in.
Growing up, Ms Digby thought she just had “a weird body”. She was bleeding through pads, underwear, sheets. One night she woke up screaming in pain. “I thought, ‘It must be my fault — not knowing how to control my period like everyone else does,'” she said. In her early 20s, the pain became so severe that she collapsed on the subway and in the shower. Once she passed out on a plane, and the last thing she remembered was humming for a flight attendant as she 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 wide range of symptoms and a lack of awareness of how to recognize and treat the disease can discourage patients from getting help. There is no cure for endometriosis, but doctors and researchers are discovering tools to manage the often debilitating pain that accompanies the disease. However, without an accurate diagnosis, patients like Ms. Digby must search for answers.
When Ms Digby went to see a doctor, she was told that she may have ovarian cysts, that she may have a sexually transmitted infection and that her intrauterine device had led to pelvic inflammatory disease. She was feeling “medically ignited,” she said, until she stumbled across an article about endometriosis and visited a center specifically designed for the treatment in New York, where she lives.
“We all know the symptoms of a heart attack,” said Ms Digby, 32. “Why don’t we know the symptoms of an extremely common disease?”
Why does endometriosis cause so much pain?
Endometriosis is associated with a tangle of symptoms, many of which are characterized by extreme pain. painful sex Painful urination and bowel movements. Menstrual cramps that cause shooting pains and pain in the abdomen and lower back. Gastrointestinal disorders, such as painful diarrhea and constipation, which patients often mistake for signs of another health problem.
The disease occurs when tissue similar to the kind that lines the uterus, known as the endometrium, grows beyond the uterus and typically lodges 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 cause severe pain beyond the uterus. But the disorder also causes pain between periods. Endometriosis can block fallopian tubes and trap blood in the ovaries to form fluid-filled cavities known as “chocolate cysts” (because they contain thick, brown fluid) or endometriomas. In rare cases, these cysts can rupture and cause sharp, intense pain. The disorder can also lead to adhesions, bands of scar tissue that cause organs to stick together.
New research examines what causes endometriosis and why some people are more susceptible than others. Studies have shown a link between endometriosis and physical and sexual abuse during childhood or adolescence. Scientists are also investigating whether the disease is hereditary: although 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 period, 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 depending on the location, quantity, depth, and size of the endometrial implants in the pelvis. More extreme pain doesn’t always correlate with later stages of endometriosis, said Dr. Monica Woll Rosen, an obstetrician-gynecologist at the University of Michigan Medical School.
“Some people with Stage 4 don’t have pain their entire lives,” she said. “And some people who are barely Stage 1 are in the worst pain and can’t get out of bed.”
The pain we ignore
Despite the pain in patients, doctors often point to other culprits before turning to endometriosis. Most women experience a long delay between the onset of symptoms and actual treatment, said Dr. Kathy Huang, Director of the Endometriosis Center at NYU Langone.
That’s partly because there’s a lack of awareness in the medical community of how the disease manifests and partly because doctors are particularly bad at identifying painful gastrointestinal symptoms as potential endometriosis, she said. Patients themselves often dismiss their own pain and shrug off endometriosis as a “bad period”.
“Up until I was 28, every gynecologist was like, ‘It’s normal, some women just have difficult periods,'” said Lindsey Sorensen, who has been bleeding constantly through tampons and pads since she started menstruating at 14. Ms. Sorensen, now 38, once went to the emergency room when she got her period at work; Her boss found her curled up 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 were binding organs in her lower abdomen together.
“One of the big obstacles for me is that even as a little girl, I was told that painful periods are normal,” said Dr. Huang “That’s the first myth we need to dispel, that pain is normal.”
And endometriosis can cause pain between periods, said Dr. Rosen, which makes the diagnosis even more difficult.
Nancy Easton first went to a gynecologist as a teenager, and at the urging of her mother, who heard her moaning in bed, she was writhing in convulsions. Ms Easton recalled her mother saying, “I don’t think I was in that much pain when I gave birth to you.” The doctor never said the word “endometriosis,” Ms Easton recalled, but prescribed her a hormonal birth control pill , a common remedy used to relieve pain in women with this condition. It did not work. Desperate, Ms Easton tried to relieve what she called “incredible pain” with alternatives, including an opiate prescribed for her grandfather after surgery and a handful of vitamin E supplements she had heard she was taking could be used for pain relief. In her 20s, she tried to tell a doctor that she thought she had endometriosis; She told Ms Easton she could try taking five ibuprofen every 12 hours. She was skeptical about taking so many medications, but the medication reduced her pain.
“That’s when I stopped complaining,” she said. “That probably prevented me from getting a diagnosis.”
In her 50s, Ms Easton found out she had ovarian cancer and had to undergo a hysterectomy. Studies show that endometriosis is associated with the development of ovarian cancer, although the risk of cancer is still low. Ms Easton believes she could have avoided the cancer and hysterectomy had she pushed for diagnosis and treatment of her endometriosis.
“I was actually proud of not being a wimp,” she said. “I thought it was just pain and that I just had to deal with it.”
How do you treat endometriosis pain?
While there is no cure for endometriosis, doctors say there are ways to treat the disease.
“Anyone who is in pain should have at least a preliminary diagnosis,” said Dr. Tommaso Falcone, professor of obstetrics, gynecology and reproductive biology at the Cleveland Clinic Lerner College of Medicine. “Pain is a signal to us that something is going on.”
The only way to effectively diagnose endometriosis is through laparoscopy, an operation that involves making a small incision in the abdomen. During the procedure, doctors may also remove or cauterize endometrial implants. But patients are often reluctant to undergo the surgery, said Dr. Falcone, and ultrasound and MRI imaging can often confirm the presence of cysts or additional tissue.
Most endometriosis patients are prescribed birth control—usually the pill, a patch, or a vaginal ring, but sometimes an IUD. These hormones reduce estrogen and slow the growth of endometrial tissue, thereby relieving pain.
Some research shows that acupuncture can reduce pain associated with endometriosis. And physical therapy, especially pelvic floor therapy, can also be an important tool to relieve the spasms that result when the pelvic muscles contract during the menstrual cycle.
“We shouldn’t just be able to offer the knife or medication when there are other people in the medical field who can help,” said Dr. Falcone.
Some studies suggest that lifestyle changes can help manage endometriosis pain. A 2012 study found that women with endometriosis reported reduced symptoms after following a gluten-free diet. Other studies show that eating anti-inflammatory foods like fruits and vegetables and limiting sugar and caffeine can help with pain.
Experts urge patients with suspected endometriosis to get second opinions. “If the doctor you’re talking to doesn’t take you seriously or just makes a casual comment, it’s really important to find someone who will listen to you,” said Dr. Huang
It’s crucial that people struggling with severe period pain acknowledge the severity of their symptoms, Ms Digby said. Even now, in remission, she’s still trying to accept that she didn’t overreact, she said. “I was completely in the dark,” she said. “I really thought I was just being dramatic.”
