Why Are So Many Black Women Misdiagnosed with Endometriosis?

Endometriosis is a chronic disease that has both reproductive and health-related consequences. It impacts more than 11 percent of women in the United States, but Black women who suffer from the condition are routinely misdiagnosed.

Black Females

According to a study conducted by the National Institutes of Health, historical bias and careless research have led to the idea that endometriosis is less likely to be diagnosed in certain racial groups, such as Black women. In fact,  because there remains a widespread perception that endometriosis is less prevalent in Black patients, it is cited within foundational textbooks of gynecology. However, recent studies conducted by NIH and the CDC suggest that endometriosis is actually among one of the leading causes of infertility in Black women.

Sufferers of the condition typically wait between eight to 12 years on average for a diagnosis. But for Back women, treatment and diagnoses lag significantly. A study published in the American Journal of Obstetrics & Gynecology revealed that Black women are 50 percent less likely to be diagnosed with endometriosis compared to white women.

According to NIH, historically, medical education has perpetuated stereotypes rather than factual evidence surrounding Black patients and their experience of pain. As a result, significant racial and ethnic disparities remain across different areas of pain care (acute, postoperative, chronic, cancer, palliative pain), with minorities receiving lesser quality pain care compared to non-Hispanic white patients. Scientists report that much of the lack of care and research is rooted in implicit and explicit biases held by healthcare providers including the notion that non-white patients have a higher pain threshold.

The Office on Women’s Health says endometriosis is particularly prevalent among women in their 30s and 40s, resulting in a risk to reproduction. While a cure remains elusive, various treatments offer hope in mitigating specific symptoms. 

Although the specific origins of endometriosis remain unknown, the Mayo Clinic indicates the following possible explanations and causes of endometriosis:

What causes endometriosis?

  • Retrograde menstruation: Retrograde menstruation suggests that menstrual blood holding endometrial cells deviates from its natural course by flowing back through the fallopian tubes and into the pelvis instead of being expelled from the body. Subsequently, these displaced endometrial cells adhere to the pelvic surfaces and organs.
  • Peritoneal cell transformation: The “induction theory” posits that hormonal or immune factors could induce the conversion of peritoneal cells, which line the abdominal inner wall, into cells resembling endometrial tissue.
  • Embryonic cell metamorphosis: During the pubescent phase, estrogen can prompt embryonic cells, in their early developmental stages, to evolve into endometrial-like implants.
  • Surgical scar implantation: Endometrial cells can affix themselves to surgical incision sites following surgeries like hysterectomies or C-sections.
  • Endometrial cell migration: Endometrial cells might be transported to distant body regions via blood vessels or the lymphatic system, potentially seeding the growth of endometriosis in locations beyond the pelvic region.
  • Immune system disorder: An immune system malfunction could impede the body’s ability to identify and eliminate endometrial-like tissue infiltrating outside the uterus.

Endometriosis symptoms

Endometriosis may present itself with varying symptoms. The Cleveland Clinic suggests that the most common endometriosis symptom is pain, which can be intense or mild and is usually felt in the abdomen, pelvic area and lower back.

Additional symptoms of endometriosis include the following:

  • Excruciating menstrual cramps
  • Abdominal and back pain
  • Dyspareunia (painful intercourse)
  • Menstrual irregularities
  • Fertility challenges
  • Discomfort during bowel movements

Endometriosis stages

According to John Hopkins Medicine, endometriosis is classified from stage one to stage four. These stages are based on where endometrial tissue exists in the body, how much tissue is in those areas, and how far it has spread.

However, a more advanced stage of endometriosis does not always mean a patient will have more severe symptoms or pain.  In fact, some women with stage four endometriosis have few or no symptoms at all, while some women with stage one endometriosis can have severe symptoms.

How is endometriosis diagnosed?

“Diagnosis of endometriosis can be challenging because the presentation and symptoms are varied,” Baick explained. “Endometriosis can be clinically suspected due to a history of symptoms such as painful menses, heavy bleeding, chronic pelvic pain, pain with intercourse or bowel movements, or urination.”

“Definitive diagnosis is by laparoscopy,” she added. “This is a surgery in which a small incision is made in the abdomen, and a thin camera is inserted to view the pelvic organs. If endometriosis is seen, a piece of the tissue can be biopsied to confirm the diagnosis. However, depending on the location or stage of endometriosis, implants may be difficult to visualize. Ultrasound or MRI might also be helpful in the diagnosis of endometriosis if there are ovarian cysts or pelvic masses seen on imaging.”

Endometriosis treatment

Managing endometriosis typically involves medical intervention or surgical procedures, says the Mayo Clinic. The treatment choice mainly depends on the intensity of your symptoms and whether or not you wish to have children.

Endometriosis medications

A medical provider might suggest utilizing an over-the-counter painkiller, like nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (Advil, Motrin IB, etc.) or naproxen (Aleve), to provide relief from distressing cramps.

However, if pregnancy is not part of your plan, a physician can propose hormone therapy as well as painkillers.

Living with endometriosis

Researchers say while medical intervention is important, fostering a better quality of life while living with endometriosis can also provide better outcomes. Therefore, making mindful adjustments to daily routines and living a healthy lifestyle can aid in fighting endometriosis. Embracing all of these lifestyle changes, in tandem with professional guidance, can empower patients to manage endometriosis.

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