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Endometriosis: An Understudied Disease

Endometriosis has previously been treated as a reproductive disorder. As a result, treatments have been limited to hormones or surgical removal, which can work for some but, for others, are not effective. Evidence now suggests that endometriosis is a whole-body inflammatory condition that can alter a person’s nervous system and severely alter their quality of life, including their ability to work, maintain relationships, and participate in social activities.

What is endometriosis?

Endometriosis is a disease in which the endometrial lining grows outside the uterine cavity, causing pain, fatigue, dysmenorrhea, dyspareunia, and infertility. 176 million people suffer from endometriosis worldwide (1 in 10 women). Healthcare professionals may underdiagnose or delay the diagnosis of endometriosis as symptoms may be vague or mimic other diagnoses, such as dysmenorrhea or irritable bowel syndrome.

The average time for a diagnosis remains around 10 years. Because of this decade-long delay in diagnosis, women often experience psychological and social harm from not quite knowing the origin of the pain they’re experiencing.

Money for research has also been thin worldwide. The National Institutes of Health (NIH) allocates nearly $47.6 billion annually to biomedical research. The estimated funding NIH allocated to endometriosis in 2022 was $16 million, only 0.038% of the annual budget.

New research leads to a new focus.

In March, the largest study on the genetics of endometriosis, which found genetic links to 11 other pain conditions and inflammatory conditions, was published in Nature Genetics. The study collected DNA from over 176,000 women and found that ovarian endometriosis is genetically distinct from other types and indicated there might be a genetic predisposition to excessive inflammation in people with the condition.

The study also investigated the genetic correlation between endometriosis and 12 different pain conditions, including migraines, chronic back pain, and headache. Perhaps treating endometriosis the same way we treat these conditions would yield promising results.

Despite high-quality care, rural areas of the state still cannot get access.

Dr. Laura Hollenbach, a pediatric gynecologist at Arkansas Children’s Hospital, knows the obstacles Arkansas women must overcome to gain access to maternal care. “Although there is high-quality primary and gynecologic care in the state, access to this care for many Arkansans is limited,” Dr. Hollenbach says. “With the closing of maternity wards in many rural hospitals, Arkansans may find increasing healthcare deserts for gynecologic care.”

Rural areas, home to 41% of Arkansas’s population, may not have enough doctors or infrastructure to keep specialized services running in a hospital. The March of Dimes 2022 maternity care report reveals that 37 of Arkansas’s 75 counties (over half) are maternity care deserts. Only seven Arkansas counties have at least two hospitals offering obstetric care or freestanding birth centers. This significant lack of maternal care statewide adds to the difficulties that women diagnosed with endometriosis encounter.

Telemedicine may help improve access to gynecological care for Arkansas women. With UAMS’s broadband initiative, several rural areas are beginning to have unprecedented access to sufficient Internet speeds required for telehealth visits. “Improved education via online resources and social media may also help to increase awareness,” Dr. Hollenbach says.

Access is not the only barrier.

“Culturally, there are beliefs about what constitutes menstrual symptoms,” Dr. Hollenbach adds. “Many women learn to normalize symptoms that may, in fact, indicate disease.” The presentation of endometriosis can be highly variable, often presenting symptoms such as fatigue, diarrhea, constipation, bloating, nausea, and excessive bleeding, all of which are common symptoms before or during menstrual periods.

Testing is also limited for endometriosis. “Therefore, it’s common for patients to undergo multiple different diagnostic tests, physical examinations, and perhaps even failed treatments before an accurate diagnosis is made,” Dr. Hollenbach explains. “Physicians having a low index of suspicion for endometriosis may lead to a more timely diagnosis. However, if a family practitioner or pediatrician then makes a referral to a gynecologist, there may be limitations in how quickly patients are able to be seen, especially in low-resource settings.”

Education and awareness are keys to overcoming this undone science.

Many people have a misconception that endometriosis only occurs in adults. While the disease does present more frequently in 30 to 40-year-old women, patients can become symptomatic as teenagers, too, making it even more likely to have a delayed diagnosis. “Our gynecology clinic at Arkansas Children’s Hospital hopes that through educating our pediatric colleagues across the state about signs and symptoms, we can prompt earlier evaluation, treatment, and referral if indicated,” Dr. Hollenbach says.

“I think gynecologists and all physicians alike have the power to question our cultural constructs regarding menstruation,” she adds. “Furthermore, we have the ability to educate ourselves and patients about normal menstruation so that there is an increased awareness about symptoms, which may, in fact, be pathologic.”

Endometriosis is often referred to as a missed disease with vast physical, emotional, social, and economic impacts on our society. With improved research efforts, we can learn better ways to diagnose and treat the disease and the impact it has on other systems that may have been historically overlooked.

There are several resources providers and patients can use to learn more about endometriosis, including the Office on Women’s Health’s Endometriosis Fact Sheet, the Endometriosis Association’s free resources, and the National Institutes of Health’s resources list for patients and healthcare professionals.

You can also learn more by watching Arkansas Children’s Hospital’s podcast episode on endometriosis featuring Dr. Hollenbach.

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