In the mid-1990s, when I first put on my lab coat as a newly minted reproductive pathologist, we referred to endometriosis as “a gynecologic disease” since it’s almost exclusively diagnosed in reproductive-age women. All these years later, we realize just how flawed that previous classification was.
My research career focused on unraveling the mechanisms behind reproductive disease and dysfunction. Through these studies, I learned a lot about endometriosis. We now know endometriosis, the presence of endometrial-like tissue outside the uterus, can present prior to puberty and long after menopause. We now recognize the inflammatory nature of this disease and how it can impact most, if not all, organs and tissues within the body. Several lines of investigation indicate women with endometriosis may be destined from birth to develop this disease, perhaps due to environmental or other exposures their parents experienced even before they were conceived.
Despite my knowledge of and contribution to the medical literature on endometriosis, I’ve recently come to appreciate that what I learned throughout my career isn’t nearly enough. Intellectual knowledge gained in a laboratory is important, but there is also insight to be gained from the women who live and breathe this disease every day.
Following a very recently conducted (and not particularly scientific) patient response poll*, I realized my endometriosis research has failed to provide me with a true appreciation of the disease’s human toll. For example, in medical journals, when we describe endometriosis-associated pain, we call it “debilitating.” While this description may be clinically accurate, based on the comments from the women who responded to my poll, it fails to convey the reality of patients living with it. One woman stated, “I’d rather have shingles again.” Another described the pain as feeling as though she were “being eaten alive from the inside.” Still another patient remarked, “The 1-10 pain scale is useless. Ask me how the pain affects my ability to function.”
A great many women reported physicians who refused to take their pain seriously. One respondent described being taken to the emergency department because of her excruciating pain, only to be sent home with “a pat on the hand and ibuprofen.” When she returned days later with vomiting in addition to severe pain, she was diagnosed with appendicitis and rushed to surgery. Only then was her Stage IV endometriosis discovered.
While pain is often a major reason a woman seeks medical treatment, endometriosis can also be associated with infertility, adverse pregnancy outcomes, adenomyosis, interstitial cystitis, and an ever-expanding range of inflammatory diseases. Endometriotic lesions attaching to the intestines can cause symptoms that mimic irritable bowel syndrome (IBS).
As someone who considers herself an expert on endometriosis, I was unprepared for the number of women who reported extreme fatigue with their disease. One patient stated, “[Endometriosis] presents different in all of us. But the one thing we have in common…fatigue.”
Within the medical literature, it is often stated that women with endometriosis may face a delay of seven to ten years between first seeking medical answers to symptoms and receiving an accurate diagnosis. However, according to manyof the women in my poll, this timeline is woefully optimistic. Multiple women reported suffering for more than 20 years before being diagnosed with endometriosis. Not surprisingly, decades of pain, anxiety, and frustration can turn to anger, as illustrated by the respondent who said, “I wasted years of my life thinking it was in my head until finally I demanded surgery. Years of my life I will never get back because [no one spent] the time to understand my pain and symptoms.”
Why the difficulty in identifying this very common disease? Certainly, the wide variation in presenting symptoms doesn’t help, nor the ability of endometriosis to mimic other conditions, the lack of a dependable biomarker, and the continuing reliance on surgery for diagnosis. However, it’s clear from patients that earlier diagnosis might have been possible if the first (or second or third) physician from whom they sought help had simply taken their issues seriously. Indeed, of the women who commented on my poll, more than half complained of being gaslighted by one or more of their physicians. One patient expressed the frustration of many when she said, “We are tired of having to fight to be heard, believed, and taken seriously when we know something is wrong with our bodies.” Yet another responded, “It may be the first time a doctor has seen me, but s/he may be the 15th one I have seen for the same symptoms.”
I retired from active research in 2026 after more than 25 years as a research scientist specializing in reproductive pathology. Over those many years, we learned a great deal about endometriosis that helped move the field forward. But my work did not help the 16-year-old in the emergency room begging for pain relief or the 45-year-old woman who’s seen 30 doctors in as many years and still doesn’t have relief from symptoms that, in her words, “have stolen my life.”
My endometriosis poll was created because I needed a new hook for a presentation to medical professionals. What I came away with was the profound realization that, despite our best efforts, we continue to fail these women. Attendees of my talk agreed we need to do better. But how?
To patients, the answer may seem obvious. Doctors need to better understand endometriosis. Of course. But let’s really think about this. To become a physician in the United States requires four years of college followed by four years of medical school. Next comes three-plus years of residency training for specialization, e.g., obstetrics and gynecology. The residency is often followed by a fellowship program for further specialization, e.g., reproductive endocrinology and infertility (REI). While more endometriosis-specific education seems valid, where would this fit into an already rigorous, decade-plus training program?
Additionally, while a fellowship-trained REI physician is perhaps best positioned to diagnose and treat endometriosis patients, he or she is unlikely to be the doctor a patient with the undiagnosed disease sees first. Instead, depending on her age and symptoms, a woman with undiagnosed endometriosis may seek help from her pediatrician, a family physician, a gastroenterologist, or even an emergency medicine physician. These doctors are often unprepared to identify a patient with endometriosis because it remains pigeonholed as a gynecologic disease. Even when a patient first seeks help from her gynecologist, that physician may also fail to identify a risk of endometriosis if her symptoms are unusual or nonspecific. There is also the very significant risk of a physician who is too willing to dismiss a patient’s concerns as normal or, even worse, imaginary.
In the absence of ensuring all doctors, regardless of specialty, are prepared to treat or, at least, identify patients with endometriosis, an alternative approach is the education of women and girls. Patients need to be taught they can and should advocate for themselves. Self-assessment questionnaires available online can help a woman determine whether endometriosis is a possible reason for her symptoms. Providing a completed questionnaire to one’s physician should aid in his or her willingness to refer her to a specialist, if appropriate. However, this approach requires the patient herself to suspect she has endometriosis. If you’ve never heard of a disease, how can you suspect you have it?
At a minimum, one in ten women is living with endometriosis. These women can bridge the gap between those who are struggling to find relief from their symptoms and physicians who are unable to help them. Mothers (and aunts, sisters, friends) with and without endometriosis must teach all girls that while some discomfort with their period is to be expected, continuous pain, pain that glues them to the bed, or pain that makes them vomit is not normal. Chronic fatigue, persistent intestinal distress, and debilitating anxiety are also not normal.
Of course, even a woman who realizes she may have endometriosis and arms herself with a self-assessment questionnaire still faces the challenge of finding the right physician, one who will not only listen with compassion but also can either identify an appropriate treatment plan or refer her to someone who can. Sadly, this may be the biggest obstacle of all.
It has been said that the first step in solving a problem is to recognize that one exists. Although identifying the problems associated with endometriosis is easy, the work to find their solutions has been arduous. Nevertheless, that work will continue until we are finally able to make endometriosis a thing of the past.
*On September 5, 2026, I posted a video on TikTok asking women with endometriosis, “What do you wish your doctor knew?” To date, it has received thousands of views and hundreds of responses.
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