For many women, painful periods are dismissed as an inevitable and uncomfortable part of life. Cramps, bloating, and body aches are all too often normalized when they can be a patient’s body crying for help.
For Black women, longstanding misconceptions about pain tolerance, cultural expectations to endure discomfort, and persistent disparities in reproductive care only make the likelihood of being taken seriously even more distant. It is no wonder that many patients with endometriosis spend years navigating chronic pelvic pain, unexplained infertility, gastrointestinal symptoms, and repeated gynecologic procedures before receiving an accurate diagnosis.
In fact, the process to get an endometriosis diagnosis — a chronic, estrogen-dependent inflammatory disease — can require multiple specialists and costly exams. People suffering from endometriosis report being given the runaround, which can be an infuriating experience.
Physicians are uniquely positioned to ensure that trajectory is smooth. By recognizing early warning signs that patients might not recognize themselves, clinicians can refer patients for specialized evaluation sooner and help them find solutions that may help preserve fertility.
According to the World Health Organization (WHO), “endometriosis affects an estimated 10 percent (190 million) of reproductive age women worldwide.” Despite its prevalence, endometriosis continues to be misunderstood by both patients and clinicians.
The condition is defined by endometrium-like tissue (usually found in the uterine lining) growing outside the uterus, causing inflammation and scar tissue. Although it can start in the fallopian tubes, ovaries, or uterine lining, it can spread to the bladder, bowel, diaphragm, lungs, and nerves.
Common endometriosis symptoms, like heavy menstrual bleeding and abdominal pain, can mimic other conditions such as sexually transmitted infections (STIs), fibroids, and other reproductive health conditions. With this in mind, physicians may choose to rule those out first by using contraceptives to treat the symptoms rather than jumping to an MRI or laparoscopic surgery to define the root cause.
In the case of Shamekka Marty, founder of Beyond the Game Health and an endometriosis survivor herself, she chalked her symptoms up to lupus, an autoimmune condition she’d previously been diagnosed with. “I knew something was wrong…I bled every single day for two years straight, needed blood transfusions, and still had to fight to be heard,” she said. Her symptoms got so bad that she needed a hysterectomy, but that was only after advocating for multiple transvaginal ultrasounds and biopsies to diagnose endometriosis.
Her story is all too common. Delayed diagnoses can feel like a shared failure, with patients often self-diagnosing incorrectly and then physicians following their lead. Yet, Tiffany Tonismae, MD, FACOG, a double board-certified obstetrician and gynecologist and maternal-fetal medicine physician at the University of Louisville School of Medicine, explained that any patient experiencing pelvic pain should meet with an OB/GYN to discuss symptoms and determine the best next step, which will often include ultrasound imaging.
“Unfortunately, not all imaging is the same, and women should specifically look for those centers experienced in managing women with pelvic pain,” Dr. Tonismae said, as they are more likely to have sonographers and physicians who may be able to detect endometriosis from an ultrasound. In some cases, diagnosis may require a pelvic MRI.
Also, researchers recently found that biomarkers in blood may be able to help doctors detect endometriosis earlier. Future endometriosis patients may be able to take a blood test — in addition to relying on imaging — before resorting to invasive surgery.
Kallia O. Wright, Ph.D., Assistant Professor in the School of Communication at the University of Miami, investigates communication specifically about Black women’s health. Her published work on her own endometriosis diagnosis and treatment journey sits at the very heart of this difficult biomedical conversation — it is both a personal and professional pain point for many. Endometriosis can negatively impact employment, romantic relationships, and even one’s own sense of self.
This condition can masquerade as other conditions, making people question their own beliefs about their body. Yet, the pain can be debilitating, often forcing people to miss school or work until menarche subsides. And because inflammation in the body can have many causes and effects, healthcare practitioners may confidently diagnose other medical issues a patient is experiencing, but “due to a lack of training and knowledge, miss the real deal,” Dr. Wright explained.
She said that general practice or family physicians should pay attention to reports of excruciating pelvic pain during menarche. In addition to using diagnostic scales to determine pain levels objectively, physicians should ask how disruptive the pain gets. “Frequent and extended periods of absenteeism from daily functions may indicate an abnormality. Additional symptoms include painful sex, painful bowel movements, and extended infertility,” Dr. Wright said. But there are some cases where patients report not feeling pain, so physicians would need to consider other symptoms like abnormal bladder or bowel movements as part of the patient profile. All of these symptoms are reasons to refer a patient to a specialist for further diagnostics, rather than prescribing medication and hoping the symptoms disappear.
Similarly, research indicates that endometriosis has a strong hereditary link. Physicians can ask patients if their mother, sisters, grandparents, or other female elders also shared the complaint of heavy periods or pelvic pain. If any one of them has an endometriosis diagnosis, then it is worthwhile to consider that as a possibility for the present patient.
“If endometriosis were a song, the title would be ‘The Great Pretender,'” Dr. Wright said. “This condition can masquerade as other conditions, further delaying diagnosis.” Common misdiagnoses include irritable bowel syndrome, inflammatory bowel disease, adenomyosis, uterine fibroids, and even sciatica when lesions affect pelvic nerves.
These overlapping symptoms often result in years of ineffective treatment while the underlying disease progresses. Patients may cycle through gastroenterology, orthopedics, pain management, or primary care before receiving gynecologic evaluation. By the time they get an endometriosis diagnosis, it may have already spread to affect multiple organs and produce symptoms beyond the reproductive tract.
Primary care clinicians should get smart about reproductive pathologies associated with chronic pelvic pain. Promptly referring patients to gynecologists or endometriosis specialists earlier is important, but clinicians also need to educate patients about tracking their symptoms in a digital or written journal. These facts can help paint a comprehensive picture for the myriad of specialists who might become involved in patient care.
Dr. Wright said the gold standard for a diagnosis is laparoscopic surgery, but there are costs and many potential implications if adhesions are located. “This education may need to start in pediatricians’ offices at the onset of menarche,” she noted. Safe and comfortable conversations with medical practitioners have to start during youth to get an accurate picture of period pain and concerns in girls’ and women’s reproductive health.
She adds that clinicians need to check their bias and engage in training to help them identify and dismantle any problematic perceptions about women’s pain and, in particular, Black women’s pain. “In the past, women were described as hysterical and attention-seeking, and unfortunately, remnants of this perception persist in the medical system, with the effects experienced differently by various ethnic groups. Gynecological experiments on Black women done by Dr. James Marion Sims have helped create the medical narrative that Black women have high thresholds of pain and, as such, there is a struggle for illness legitimacy in the doctor’s office, with Black patients often being dismissed,” Dr. Wright explained.
Marty says that physicians can turn that all around with two simple changes: “Listen to us. Believe our pain.”
Although ultrasound has become increasingly valuable, experts emphasize that no single imaging study can definitively diagnose every case of endometriosis.
Dr. Tonismae explained that ultrasound complements, rather than replaces, the physical examination. “Traditional pelvic exams teach us to feel for abnormalities in size or fullness in the pelvis, but often can’t identify the pathology.” Ultrasound provides additional information that helps correlate symptoms with structural abnormalities and can guide appropriate management.
Patients with persistent symptoms may also be referred for biopsies, colposcopies, and MRIs for diagnosis. Laparoscopic surgery can also be used to directly visualize and consider how risky removing endometrial adhesions would be. Depending on disease severity, excision surgery may be effective. But for people looking to preserve their fertility options, hormonal therapies may suppress menstruation, reduce inflammation, and reduce symptoms.
Hysterectomy is not a cure for endometriosis, although some patients may have suffered for so long that they are willing to go to that extreme. Relief can come from identifying environmental factors that may be exacerbating overall inflammation, like mold, irritants, and dietary ingredients. Gonadotropin-releasing hormone (GnRH) can also help lower estrogen levels long enough to help the body heal and repair.
Key Takeaways
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