“Before my sister had it, I wouldn’t have ever put it together and thought, undiagnosed endometriosis,” says Dr. Valerie LeComte, an emergency medicine provider who works in different facilities nationally through US Acute Care Solutions. Dr. LeComte watched her sister struggle with pelvic pain and horrific menstrual cramps before finding an endometriosis specialist and receiving adequate care.
Despite over 5 million patients struggling with endometriosis in the United States alone, Dr. LeComte remembers there being little to no education regarding endometriosis during her time in medical school, even while being on her gynecology rotation. Once her sister was diagnosed, and started treatment following a multidisciplinary care regimen, Dr. LeComte took that newfound awareness to her emergency medicine practice-recognizing that many of her regular chronic pain patients could also be unknowingly struggling with endometriosis.
Treating endometriosis and any chronic pain issues in the emergency room can be challenging, and often frustrating, for both providers and patients. Endometriosis patients have often felt frustrated by their experiences in the emergency room. They have felt dismissed, have been called out for being drug seekers, or have been faced with providers who are not familiar with the disease, which leaves many feeling helpless. Dr. LeComte assures that providers feel helpless as well, recognizing that emergency care providers “cannot diagnose or treat” endometriosis. The majority of endometriosis cannot be seen on scans and emergency room providers are not trained endometriosis specialists. At best, emergency care providers can assess patients for bowel obstructions, the presence of endometriomas or cyst ruptures, as well as other emergent consequences from the disease and temporarily make patients feel less pain. But relying on the emergency room for chronic pain management has it’s challenges.
Dr. LeComte laments, “The chronic pain crisis and the opioid crisis are overlapping. Many chronic pain patients end up on opiates without a diagnosis or a treatment plan to address the source of the pain.” Emergency room providers are often in difficult positions when patients come in with chronic pain, with the acute awareness that people are dying from opioid overdoses. In 2016, the CDC reported that 42,000 people died in opioid related deaths. Also, pain management specialists have argued that opioids are not often the best intervention for chronic pain, as patients often develop tolerance to opiates and become at risk for opioid addiction.
Yet, from the endometriosis patient perspective, the pain experienced feels acute. With an average ten year delay in diagnosis, partly due to the lack of education and awareness that Dr. LeComte herself experienced as a medical provider, patients are often in excruciating pain for many years. They often have no idea why their body is in crisis, which also adds a layer of anxiety and trauma to the physical pain. Due to the impact of delayed diagnosis on the nervous system, and inaccessibility to quality multidisciplinary care, some endometriosis patients argue that with limited available options, opioids help them function and should not be automatically withheld.
Dr. LeComte sees many patients with chronic pelvic pain, and often these patients come monthly to the emergency room for treatment. She has encouraged these patients to explore an endometriosis diagnosis with their gynecologist, but patients have reported that these recommendations have fallen on deaf ears. In a March 2017 article, ACOG’s Tom Gellhaus, MD shared that up to “63 percent of general practitioners feel uncomfortable diagnosing and treating patients with endometriosis, and as many as half are unfamiliar with the three main symptoms of the disease.” Dr. Ted Lee, an endometriosis excision specialist operating out of the University of Pittsburgh, has found that referring patients back to their gynecologist for aftercare is not always successful as, “Many gynecologists are ill equipped to treat endometriosis and do not know about excision or multidisciplinary care, and even those that do know about excision may not be familiar with a local surgeon who is capable of excision.” What ends up happening is a patient cycle of pain and frustration that can be hard to transform due to the lack of awareness for the disease.
Another challenge that both patients and emergency room providers face is addressing healthcare needs without medical insurance. In 2012, the Centers for Disease Control and Prevention cited a National Health Interview Survey that found that almost 80 percent of adults who visited ED’s over a 12-month period said they did so because of a lack of access to other healthcare providers . Endometriosis patients with top notch insurance and financial means to support needed interventions still have many challenges in obtaining quality multidisciplinary endometriosis care. For the 1 in 10 endometriosis patients without insurance or means to pay for care who are struggling with intense pain and other debilitating symptoms, the emergency room seems like the only viable option to find relief.
Dr. LeComte feels “a better system for outpatient referrals and follow up, resolving obstacles to healthcare for those uninsured, and better accessibility to outpatient multidisciplinary treatment” could help revolutionize care for endometriosis patients. Her sister has found great relief not only through expert excision surgery, but also by engaging in alternative, multidisciplinary treatments. Dr. Lee has made it a point to forge working relationships with the emergency medicine providers at his hospital who will then refer chronic pain patients to Dr. Lee for assessment and follow up care.
Endometriosis advocates are hopeful that having conversations with emergency room providers and organizations like Emergency Medicine Residents Association and American College of Emergency Physicians on how to better support both providers and pelvic pain patients in the emergency room setting could help alleviate some of the burden for both providers and patients. Helping providers help patients learn about a potential endometriosis diagnosis and providing them with educational and support resources upon discharge would help patients develop a new awareness regarding their symptoms. Referring patients to multidisciplinary providers to pursue the necessary adequate care would most likely reduce emergency room visits for many patients, and give those struggling needed access to expert resources and a more comprehensive treatment plan. Dr. LeComte is hopeful that the emergency medicine community would welcome working with the endometriosis advocacy community and experts in care due to the potential to not only improve patient outcomes, but also address some of the challenges that providers in this field face.