In recent years, celebrities like Padma Lakshmi and Daisy Ridley have spoken about their experiences with endometriosis, and their candor has raised awareness of the disorder. But while many people have heard the term endometriosis, there’s still a lot of confusion about what it actually is, how it affects people, and how it can be treated. To set the record straight, we spoke with Dr. Iris Kerin Orbuch, a gynecologist who specializes in endometriosis treatment and co-authored the 2019 book Beating Endo: How to Reclaim Your Life From Endometriosis. Here’s the truth behind six common misconceptions.
1. Misconception: Endometriosis occurs when the uterine lining grows outside the uterus.
Though endometriosis gets its name from the word endometrium—the tissue that lines the uterus—it doesn’t involve the misplacement of the endometrium itself. As Orbuch explains, the condition is caused when tissue similar to the endometrium is found outside the uterus. These clusters of cells (known as “implants”) most commonly form on parts of the female reproductive system, like the ovaries and fallopian tubes, but they can also occur in other places, like the diaphragm and lungs.
During the menstrual cycle, the endometrium thickens in preparation for a fertilized egg to grow inside the uterus. If there is no fertilized egg (i.e., you don’t get pregnant), the endometrium then starts to shed (a.k.a. getting your period). The cell clusters involved in endometriosis mimic this process, thickening and then shedding much like the endometrium does. Since that’s happening outside the uterus, it can cause inflammation, pain, and other discomfort.
2. Misconception: All people with endometriosis experience severe pelvic pain.
One hallmark symptom of endometriosis is pelvic pain, which can occur before, during, or after your period; during sex; or really any other time. But not all patients are plagued with pain. “There’s no correlation between quantity of endo and severity of symptoms, meaning you could have a belly full of endo and be asymptomatic,” Orbuch says. “And the converse is true. You could have a belly full of endo and be in debilitating pain. You could have two spots of endo and either have terrible pain or no pain—and anywhere in between.”
Pelvic pain also isn’t the only symptom patients experience. For an overwhelming majority of all people diagnosed with endometriosis, the condition initially manifests as a gastrointestinal issue. Bloating is common, as are diarrhea, constipation, painful bowel movements, and nausea. Endometriosis can also cause urinary urgency or frequency. If you have endometriosis implants in your lungs or diaphragm, you could even experience shortness of breath. “We once had a patient who had implants on her nose, and she would have nosebleeds every month with her period,” Orbuch says. “So it can affect every part of your body.” Another common issue is infertility.
3. Misconception: Only gynecologists need to know about endometriosis.
The variety of ways endometriosis can affect your body is a big reason it often takes so long for a patient to actually get diagnosed with the condition—because doctors in other disciplines don’t recognize it. If someone with undiagnosed endometriosis suffers from gastrointestinal issues, for example, they might visit a gastroenterologist. After inconclusive tests, that doctor might diagnose them with irritable bowel syndrome, which is basically a way to both validate their symptoms and acknowledge that the cause of those symptoms is still unknown.
Something similar can happen to people with undiagnosed endometriosis who are struggling to get pregnant. “On an ultrasound, your ovaries look OK, your fallopian tubes are open, and, if you have a partner, the sperm is good,” Orbuch explains. Without any explanation for your inability to conceive, your reproductive endocrinologist might diagnose you with “unexplained infertility.”
Studies have shown that the delay between symptom onset and diagnosis of endometriosis can range from four to 11 years. It’s important for physicians across many disciplines—plus parents, school nurses, and the general population—to understand endometriosis, so they can identify the issue and help patients seek treatment in a fraction of that time.
4. Misconception: Teenagers can’t have endometriosis.
Not only can teenagers have endometriosis, they can start exhibiting symptoms before they’ve started their periods. “Usually they’ll report stomach aches. [They’ll say things like] ‘I’ve always been constipated,’ or ‘I’ve always had diarrhea,’ or ‘I’ve always had a stomach ache,’” Orbuch says. Those issues may appear in the few years directly preceding period onset, when hormone production increases and other puberty-related changes occur. But it’s possible that implants have existed in their bodies for much longer.
A 2012 study found signs of endometriosis in nine of 101 female fetuses, or a rate of nearly 9 percent. For reference, it’s estimated that around 10 percent of the entire reproductive-aged population has endometriosis. More research is needed in order to understand why endometriosis develops—and how common it is for people to develop it in the womb—but it’s true that young girls can experience symptoms.
5. Misconception: Hysterectomy cures endometriosis.
Because endometriosis is related to the menstrual cycle and the hormonal fluctuations that come with it, some people think a hysterectomy—surgical removal of the uterus—is sort of a last-ditch, one-size-fits-all way to curb the whole issue. This isn’t true. “There is no certainty that a hysterectomy will rid a patient of their endometriosis,” Dr. Harry Reich, a pioneer in the study of endometriosis and a mentor of Orbuch, told the Endometriosis Foundation of America.
The root of endometriosis is the tissue outside the uterus, and removing the uterus doesn’t directly address that. In short, implants can still become inflamed even after a hysterectomy. “You’ve got to cut out—or excise—the endo to get rid of that inflammation and those inflammatory cells that are just wreaking havoc on every system in your body,” Orbuch explains. In this type of laparoscopic surgery, which Orbuch considers “the cornerstone” of all endometriosis treatment, the implants themselves are removed.
6. Misconception: Managing endometriosis requires medication.
Endometriosis patients who suffer from severe pain are often prescribed medication that help alleviate it. “I have so many patients [who] come to me, and they’re on narcotic patches to deliver a continuous amount of narcotics, because they’re in so much pain,” Orbuch says. Patients are also often given anti-inflammatory drugs (which can exacerbate gastrointestinal symptoms), birth control pills, or medications that decrease estrogen production (which can cause menopause-like effects).
“Birth control and medicine don’t treat endometriosis. They suppress the symptoms of endometriosis while the disease continues to progress,” she says. Essentially, they’re helping you get through each day with less pain, but what’s causing the pain is still there. While the ultimate solution is, again, excising the implants, there are ways to mitigate pain and other symptoms that don’t involve drugs. Years of gastrointestinal grief can make someone chronically tighten their pelvic floor muscles, so Dr. Orbuch often recommends her patients for pelvic floor physical therapy and works with nutritionists to identify dietary changes that can help heal the gut.
Patients also often cope with pelvic pain by hunching over or tensing up in general. “And that means all your abdominal muscles are tight, and that’s pulling on your back and your neck,” she explains. “For many of my patients, it’s the secondary tight muscles which are wreaking such havoc on their bodies ... and when we release that, and we teach them how to have a proper bowel movement, and how not to squeeze, then they already have started to reset their system.”
It’s only after patients have worked on these techniques that Orbuch will surgically remove implants. Sometimes, patients feel better enough to delay the procedure until a more opportune time. “Most people end up having the surgery because you have to cut out the inflammatory cells and reset the body in order to get better,” she says. But since her patients have already mastered techniques to mitigate symptoms, many of them can avoid relying on narcotics to recover from surgery—and even avoid multiple surgeries in the future.