Beyond the Basics: (Re)Imagining Endometriosis Care
Updated: Sep 22
By Courtney Rosani and Theo Kapetanakis, MD
Engaging an Endometriosis-Minded Curiosity
Endometriosis has been a disease that polarized communities of patients and physicians alike throughout the years. Classic definitions such as the one from the World Health Organization (WHO) might fall short on describing the true nature of the disease. For example, the burden of endometriosis after the onset of menopause tends to be minimized or ignored while a similar approach exists for endometriosis in teenagers or pre-adolescents. Thus, a resulting curiosity forms, what perpetuates such misconceptions about endometriosis? As an endometriosis patient and an endometriosis surgeon, we bring this curiosity to understanding socio-ecologically where endometriosis from a clinical and social perspective is both encouraged and discouraged to be fully understood, and further ways in which advocacy strives for a more holistic version of endometriosis care.
We both arrived at endometriosis unintentionally. For the surgeon, his journey came by chance, while training in the Minimally Invasive Gynecologic Fellowship (MIGS), his mentor was someone whose passion for endometriosis care is known across the world. From there, he embraced the challenges endometriosis posed, not only through its clinical difficulty but the social ones as well, advocating on patients’ behalf when needed and providing a listening ear that had been so often denied. For the patient, she also came to endometriosis and its advocacy initiatives by chance, being one of the on average one in ten women diagnosed with endometriosis. Once fearing and hating the disease, she has come to find love for it and the people in its community. Over time, she found the strength to speak up, and a fortitude to tackle the challenges endometriosis care faces, determined to forge a clearer path for the women behind her.
Blending together the experiences of both the patient and the endometriosis surgeon, we have identified numerous points of observation and intervention for better endometriosis care.
Endometriosis Misconceptions and Current Concepts
Regarding the scientific understanding of endometriosis, the landscape has also evolved throughout the years. We have now moved on from the classic “retrograde menstruation” theory where endometriosis is implanted throughout the pelvis every month with menstrual blood and endometrial tissue finding its way into the pelvic cavity through the tubes. Of note this theory is quite archaic, first being introduced by Sampson in 1925. Ever since a multifactorial pathogenesis has been recognized with pro-inflammatory processes secondary to immunological dysregulation now being considered in the forefront. Importantly, the “embryonic rest theory” where remnants of embryonic cells are transformed into endometriosis under estrogenic stimulation has now re-emerged. One important implication from such a theory is that endometriosis has its origin in the embryo stage of development thus complete endometriosis excision would offer a curative result given no such embryological event repeats itself during the human life cycle.
Inadequate Medical Training for Future Surgeons
It is difficult to control for endometriosis education in medical school curricula throughout the world, since most medical students and practicing gynecologic surgeons received little to no specific training in their early formative years. It is certainly encouraging that increased awareness has indeed improved the medical community’s knowledge on the disease, but this is currently insufficient. It is important to question, why, if endometriosis paradigms have shifted, has this not been reflected downstream in medical training?
Looking beyond the current basic science of endometriosis one needs to stand on the status of training of physicians and surgeons on its management. Given the multitude of topics a resident in obstetrics & gynecology (OB/GYN) needs to learn throughout their training it is probably not surprising that a majority of new gynecologists will feel some apprehension when facing the medical and surgical challenges of endometriosis. It seems that although the understanding of the disease might have improved, this is not necessarily the case for subsequent management with 59% of OB/GYN residents in the US feeling comfortable with medical and even less (26%) with surgical management.
Such surgical management in particular has been problematic throughout the years with the ablation of endometriosis lesions being a common practice. Unfortunately, this is a non-therapeutic approach where only the tip of the iceberg is treated. Given endometriosis has a well-established tendency to create inflammation that extends several centimeters around the obvious lesion only complete surgical eradication, similar to cancer eradication, would offer a complete resolution. Excision vs. ablation of endometriosis has been a debate in the past but few if anyone would support ablation nowadays and through the context of the current understanding of the disease. Endometriosis excision mastery however is more time and resource consuming and certainly way large to fit into the career of the general obstetrician/gynecologist. It requires specific training and dedication as well as intense mentorship so as one can navigate the medical, surgical and social intricacies of endometriosis.
Briefly, if one is to take on the task of endometriosis surgical excision, a period of intense training and mentoring would need to precede. A surgical fellowship in minimally – invasive gynecologic surgery is usually the avenue for initial engagement with advanced excision techniques albeit not the only one. It would eventually take years of daily treatment of endometriosis patients for one to master the nature of such surgery and the subsequent care. Of note, the late Dr David Redwine a true global pioneer in endometriosis excision, recognized and loved by many subsequent experts and patients alike, did not have specific fellowship training but possessed a true love for his craft and genuine intention to help suffering patients. Currently, what often dictates if a surgeon will be able to tackle advanced excision is ultimately more due to a personal desire to think beyond the traditional medical norms and training, seeking out alternative training modules after already completing required medical training rather than relying solely on traditional medical education.
We want to share a few noteworthy technical points that might be of interest to the reader: endometriosis is now well known to have a variety of appearances that could camouflage the disease and mislead the inexperienced eye. For example, red, white and clear lesions could potentially go undetected if one is only looking for the classic so-called “powder burn” lesions, eventually leading to incomplete excision. Interestingly up to 25% of atypical lesions are indeed endometriosis, thus disease that does not fit the classic appearance could go undetected. Also, the pelvic innervation and its management has only recently seen specific study and focus through the emerging field of neuropelveology. One will need to understand the variety of specific pelvic pain and non-pain symptoms, their pathways and interactions, to create a truly personalized care plan in lieu of one-size-fits-all solutions.
Finally, we need to move beyond the notion that endometriosis is strictly a pelvic or even gynecological disease. It is well established that endometriosis affects the whole body through a variety of mechanisms and certainly multiple pelvic and extra-pelvic organs. In order to reduce the risk of insufficient treatment, one needs to create and engage regularly with a team of multiple specialists (colorectal, thoracic, urological surgeons amongst others) able and willing to intervene regardless of the extent of the disease. The notion that a hysterectomy (removal of the uterus with removal of the ovaries) is the ultimate treatment for endometriosis is now outdated and should be abandoned. Endometriosis is located outside of the uterus and should be excised completely without the automatic sacrifice of the uterus. The latter certainly can be removed (also via minimally invasive techniques and without a large incision) if it is a separate source of pain (such as in cases where it is infiltrated by endometriosis, an entity called adenomyosis) but that should not be an automatic assumption given endometriosis is an entity separate from the uterus.
Lack of Financial Incentives for Endometriosis Care
As awareness of endometriosis has grown, so has the need for specialized care, both via expert excision surgery as well as the overall support in the challenges endometriosis sufferers are facing. Endometriosis services’ reimbursement is a highly complex topic deserving of a separate mention but here are some thoughts. Unsurprisingly the health insurance establishment does not incentivize high-quality expert surgery given the lackluster reimbursement schedules. Many advocacy groups are actively fighting for that to change beginning with Medicare rates as private payers tend to use the former as a benchmark to start negotiations. Likely mirroring the underfunding of endometriosis and the efforts of the community to adapt, this has led to two different ecosystems of expert endometriosis care. On one side is the cash-pay option where surgeons will get paid out-of-network fees to cover the expenses and overhead related to such complex operations. On the other hand, in-network surgeons will get paid in-network fees, which can vary depending on plans and carriers. Given that these reimbursements are less, in-network experts exist but are fewer. Paradoxically the financial burdens of endometriosis at the societal level are well established, but it seems these conclusions are not being acted upon in a tangible manner.
Regardless of each approach, underpinning each financial pathway are decisions that work around larger, systemic inequalities. Endometriosis surgeons and patients bear the brunt of finding a comfortable balance between adequate financial appreciation for surgical expertise and complexity without providing unnecessary burdens to the patient.
Gendered Biases in Care
Gendered biases have long existed in medical care. How endometriosis, and broadly women’s health, are perceived matters. If endometriosis is misunderstood or deprioritized on a systemic level, the effects of those misperceptions ripple down to all levels of medical care, from research and innovation to interpersonal experiences between patient and doctor. Returning to the previously mentioned “Sampson’s Theory,” it is essential to consider why, if retrograde menstruation has largely been disproven, there is such lackluster effort to incorporate new endometriosis paradigms into medical training and practice. Looking within the American Association of Gynecologic Laparoscopists Fellowship (AAGL) guidelines, there is an undeniable disincentive for endometriosis surgical standards. Of the 405 minimum required surgical procedures for fellowship graduation, there are only a mere 45 required surgeries for endometriosis, and no minimum requirements for moderate or complex disease. In contrast, the minimum requirement for hysterectomy surgeries is threefold, with a minimum standard of 135 cases. At the institutional level, from medical paradigms to surgical standards, there remains a deep discomfort that a condition that overwhelmingly affects women is not desired to be understood and acted upon as a disease with complexity, underpinned by a perceived tolerance for women’s pain and suffering.
Looking beyond endometriosis, it is hard to ignore that women were not mandated to be included into clinical trials until 1993. Looking more contemporarily, endometriosis remains continuously underfunded. Studies demonstrate that endometriosis patients receive less than one dollar per person in federal funding per year and in 2025 received seven percent of NIH federal funding. It is difficult to not consider that a chronic misunderstanding and disincentive of endometriosis care has played a mutually reinforcing relationship between innovation and treatment.
Misunderstood patients are bound to be misdiagnosed patients. When endometriosis is systemically deprioritized from federal funding and treated with a lack of curiosity, so will the patients who experience the disease. Medical care, from OBGYNs to emergency room doctors to nurses, follow suit in how to approach the disease from a clinical and interpersonal level. Studies have demonstrated that pain experiences gender biases, detailing that upon evaluation women’s pain was consistently underrated, and often classified as a psychological rather than physical issue. Men were consistently overrated on their pain levels and were overwhelmingly likely to be deemed a truly medical issue.
Nationally, the average delay in diagnosis of endometriosis is 7-10 years, but it can often be even longer. Amongst the 35 women who testified on behalf of the Massachusetts endometriosis bills at the State House in July 2025, the average delay was even higher (18.5 years). Along the way to these diagnoses, these women were told countless times they had everything but endometriosis. In painful symphony, these women shared countless stories of being told they had anxiety, were told they couldn’t comprehend their own medical issues, were irrational and to become pregnant to solve their issues. Even within the medical world, the institutional and the political are personal. What these women felt were not extreme or abstract issues, but rather the embodiment of systemic inadequacies and ambivalence towards a disease that overwhelmingly affects women.
Rethinking Chronic Care
One of the most difficult realizations a patient can have is learning that endometriosis, even when excised by a skilled professional, often comes with lifelong management. Due to lingering issues caused by often years of undiagnosed endometriosis and other comorbidities, excision surgery is often one step along the healing journey rather than a finish line. Understanding this is highly important for both the doctor and the patient as they navigate what “life after excision” will look like. Patients often manage multiple additional specialists and conditions while constantly trying to figure out what their new “normal” may be after excision. For both the physician and the patient, the “cure” narrative is one that often causes more harm than help. It is essential that we move away from degrees of finality and towards steps of functionality to better reflect the treatment path for both patients and providers. Doing so not only reduces the rhetoric of the “insolvable patient” but also reflects the severity of the disease and its overlapping conditions.
Putting Thought into Future Actions
While we have established numerous points of improvement for endometriosis care, it is insufficient to be critical of these issues, and thus we reflect towards the future with a prescriptive approach. It is evident that current endometriosis management approaches must be at minimum modified, at best overturned. Moreover, the pathway for endometriosis treatment exists in multitudes, one that begins with expert excision and follows an individual, not monolithic journey, encompassing multidisciplinary care. We have also established that these practices cannot be disentangled from social issues, paying attention to the way in which aspects of identity, such as gender, influence the way a patient accesses and experiences endometriosis treatment. Lastly, at the heart of these issues is a necessity for the patient and the physician to work in partnership. While there are many points of change for endometriosis care, it is imperative to not forget those at the very center of the disease, those who experience it and those who treat it. It is with these considerations that we continue to create a better pathway forward for endometriosis care.
Courtney Rosani is a current PhD Student at the Fletcher School at Tufts University where she studies the intersection of reproductive and obstetric care, armed conflict, and humanitarian programming. When she is not working on her doctoral studies, she works as a contributor for The Endometriosis Alliance of Massachusetts, taking part in advocacy measures such as testifying at the Massachusetts State House in support of the newly passed Endometriosis Task Force. In her free time, she can be found running along the Charles River.
Dr. Theo Kapetanakis is a minimally invasive gynecologic surgeon practicing in NYC. Focused in endometriosis excision, he completed his training at Mount Auburn Hospital in Boston and practiced in the New England area for several years. His passion for surgical education led him to a variety of roles in academia and the industry, promoting surgical education focused on endometriosis for medical students, residents and fellows alike. When not working he is either traveling or training for his next run.
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