Sarah Digby barely remembers her first period, but the third is locked away 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 pain shot down from her pelvis to the back of her legs. His feet went numb. She was afraid of not being able to move. She tried to breathe slowly, to keep herself 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 bled through towels, underwear, sheets. She woke up one night screaming in pain. “I thought: it must be my fault, I must not know how to control my period like everyone else does,” she said. In her early twenties, the pain became so intense that she collapsed on the subway and in the shower. Once she passed out on a plane, and the last thing she remembered was the buzz of a flight attendant as they were about to close the cabin door.
It wasn’t until Ms Digby was almost 27, almost 15 years after starting her period, that she was diagnosed with endometriosis, a chronic condition that affects 10% of women and girls, according to the World Health Organization. But the wide range of symptoms and lack of awareness about how to recognize and treat the condition can keep patients from getting help. Endometriosis is incurable, but doctors and researchers are discovering tools to manage the often debilitating pain that accompanies the disease. Without an accurate diagnosis, however, patients like Ms Digby find themselves searching for answers.
When Ms Digby saw a doctor, she was told she might have ovarian cysts, she might have a sexually transmitted infection and her intrauterine device had led to pelvic inflammation. She felt “medically wasted,” she said, until she came across an article about endometriosis and sought out a center in New York, where she lives, specifically designed to treat her.
“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 accompanied by a tangle of symptoms, many of which are characterized by extreme pain. Painful sex. Urination and painful stools. Menstrual cramps that cause shooting pains and pains 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 that lining the uterus, known as the endometrium, grows beyond the uterus and usually implants in the pelvis. When someone with endometriosis has their period, the same biochemicals that cause the uterus to contract also activate the endometrium in the pelvis, which can lead to severe pain beyond the uterus. But the disorder also causes pain between periods. Endometriosis can block the fallopian tubes, trapping blood in the ovaries to form fluid-filled cavities called “chocolate cysts” (because they contain thick, brown fluid) or endometriomas. In rare cases, these cysts can rupture, causing sharp, intense pain. The disorder can also lead to adhesions, bands of scar tissue that cause organs to stick together.
Emerging research is investigating the causes of 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 studying 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, based on the location, amount, depth, and size of endometrial implants in the pelvis . More extreme pain isn’t always correlated with 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’ve never had pain in their entire life,” she said. “And some people with just 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 before focusing on endometriosis. Most women experience a long delay between when they start experiencing symptoms and when they actually receive treatment, said Dr. Kathy Huang, director of NYU Langone’s Endometriosis Center.
This is partly because there is a lack of awareness in the medical community about how the disease manifests and partly because doctors are particularly poor at identifying painful gastrointestinal symptoms as potential endometriosis. she said. Patients themselves often dismiss their own pain, seeing endometriosis as just a “bad period.”
“Every ob-gyn until I was 28 said, ‘It’s normal, some women just have difficult periods,'” said Lindsey Sorensen, who had been constantly bleeding through tampons and pads since she started. started menstruating at age 14. Ms Sorensen, now 38, had to go to the emergency room when she got her period at work; her boss found her curled up in a fetal position on the floor of his cabin. She later discovered that she had endometriosis so severe that it had reached her ribcage and bands of tissue had bound organs together in her lower abdomen.
“One of the big hurdles for me is that even for me, as a little girl, I was told 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 harder 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 so much pain when I gave birth to you. The doctor never said the word ‘endometriosis’, Ms Easton recalls, but prescribed her a hormonal birth control pill, a common tool for pain relief in women with the condition. It did not work. Desperate, Ms Easton tried to dull what she called ‘unbelievable pain’ with any alternative, including an opiate her grandfather had prescribed after surgery, and handfuls of vitamin E supplements , which she had heard could be used to relieve pain. In her twenties, 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 medications eased her pain.
“That’s where I stopped complaining,” she said. “That’s probably what kept me from getting a diagnosis.”
In her 50s, Ms Easton was diagnosed with ovarian cancer and had 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 that if she had pushed for a diagnosis and treatment for her endometriosis, she might have been able to avoid the cancer and the hysterectomy.
“I was actually bragging that I wasn’t a wimp,” she said. “I thought it was just pain and I just had to deal with it.”
How to Treat Endometriosis Pain
Although there is no cure for endometriosis, doctors say there are options for treating the condition.
“Anyone with pain should at least have a tentative diagnosis,” said Dr. Tommaso Falcone, professor of obstetrics, gynecology and reproductive biology at Cleveland Clinic Lerner College of Medicine. “Pain is a signal to us that something is happening.”
The only way to effectively diagnose endometriosis is through laparoscopy, a surgical procedure 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 have surgery, Dr. Falcone said, and ultrasound and MRI imaging can often confirm the presence of cysts or additional tissue.
Most patients with endometriosis are prescribed a contraceptive – usually the pill, patch or 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 can relieve pain from endometriosis. And physiotherapy, especially pelvic floor therapy, can also be an essential tool to help relieve cramps that occur when pelvic muscles contract during the menstrual cycle.
“We shouldn’t be able to offer the knife or medicine when there are other people in the medical field who 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. According to other studies, eating anti-inflammatory foods like fruits and vegetables and limiting sugar and caffeine can help relieve pain.
Experts urge patients who suspect they have endometriosis to seek a second opinion. “If the doctor they’re talking to doesn’t take them seriously, or just makes an offhand comment, it’s really important to find someone who will hear you out,” Dr. Huang said.
It’s essential that people dealing with severe period pain recognize 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 dramatizing.”