the chronicCurrently there is no known cure or preventative treatments for endometriosis. There are several treatment options available that can help in disease management. Unfortunately, few options actually target the disease and most only address the symptoms. Each treatment has its own benefits, limitations, and risks to consider. Contemporary treatments are based upon the surgical removal of lesions and medical strategies that suppress estrogen or menses. Due to the complexity of endometriosis and its symptoms, these strategies do not provide a suitable model of long-term care for patients. While there have been efforts to define guidelines by various associations, the best treatments for endometriosis still remain under debate. Specialists and researchers have taken a firm stance that successful treatment requires quality excision surgery and access to multidisciplinary care.
Until endometriosis care is considered as high a priority as gynecological oncology management and this care predominantly takes place in centres of expertise, led by those with training in complex benign gynecology, we will continue to fail our patients. Looking past any specific treatment, a comprehensive, multidisciplinary system that emphasizes non-invasive diagnosis gives people control of their disease and more of the autonomy they deserve in choosing their treatment. It is time that we stop ignoring endometriosis because of its benign nature and start treating it as if it were cancer.- Ignored Because It Is Benign: It Is Time to Treat Endometriosis as if It Were Cancer
When seeking care for endometriosis, a patient will be seen by a gynecologist. A gynecologist specializes in the health of individuals with a female reproductive system (vagina, uterus, ovaries) and breasts, regardless of gender identity. Unfortunately, gynecologists are not fully equipped to treat endometriosis patients due to lack of training in medical school. Medical students do not have a dedicated class on the subject and learn very little about endometriosis in school. Becoming an endometriosis specialist requires intensive training after medical school and years of personal dedication. Endometriosis surgery is considered to be one of the most difficult surgeries in the human body. Due to these factors, gynecologists should refer endometriosis patients to a specialist to receive the best care possible. Studies have found higher rates of success, a greater reduction of symptoms, and fewer re-operations when patients were treated in specialized centers with experienced teams.
The current system’s inability to adequately address endometriosis pain symptoms often results in the emergence of broader functional sequela and psychological impact. The ability to address these broader impacts is crucial and certainly requires a more comprehensive, multidisciplinary approach to care.
Specialists believe that a comprehensive, multidisciplinary approach to care is necessary to address the many comorbidities and complexities of the disease. A multidisciplinary approach means seeking out a variety of doctors and specialties to widen the scope of your care. A gynecologist, preferably an endometriosis specialist, will perform the diagnostic surgery and surgical treatment and provide referrals to other healthcare providers. Combining treatments, such as excision surgery, diet and nutrition, complementary therapies, and physical therapy, can lead to patients effectively managing the disease and their symptoms in the long-term. Patients will also need a highly individualized, patient-focused approach to care since no two patients have the same presentation of symptoms. It’s also important that the specialists communicate effectively with one another to bridge the gaps in their knowledge.
Patients with endometriosis often require individualized care over a long-term period, where priorities may change depending upon the type and severity of symptoms, the impact of these symptoms, current or future fertility goals and lifestyle factors. Individualized care benefits from a multi-disciplinary network of experts sufficiently skilled in providing advice on and treatment of endometriosis and its associated symptoms, based on the best available knowledge, their extensive experience, and their transparent record of success rates.
Cost of Care
Receiving long-term care from a variety of specialists can become extremely costly, making it inaccessible for many patients. Due to an antiquated approach to managing complex chronic diseases, insurance policies do not cover complementary treatments and healthcare providers tend not to offer them.
This (single-provider) model of care for a complex chronic disease without a cure can pose challenges for both patients and care providers. With limited complementary strategies, such as mental health, acupuncture, nutrition, and pelvic physical therapy expertise to comprehensively address the patient’s pain and its consequences, optimal care may not be achieved.
For US patients, ACOG, The American College of Obstetricians and Gynecologists, defines the standard of care for endometriosis and ultimately influences what treatments insurance companies will cover. Despite recent data points, patient outcry, and pushback from specialists, ACOG’s guidelines remain ineffective and outdated and include palliative hormonal medications and ineffective surgeries, such as hysterectomies. If ACOG were to recognize excision surgery and the multidisciplinary care approach, insurance companies would be obligated to provide coverage for treatments.
The care patients can get varies massively around the world and within countries, and is often dependent on what they can afford. In the US, insurance companies pay the same amount for any endometriosis surgery, regardless of the method or extent of the disease or the specialization of the doctor.- Endometriosis: The Hidden Suffering of Millions of Women Revealed
All over the world, the quality of care is often defined by what patients can afford. Unfortunately, the bulk of the burden falls on the patient to pursue these services and to pay for them out of pocket. This can delay care or make it completely impossible to receive treatment. Without adequate treatment the disease will progress and likely become more debilitating and complex over time.
The burden of cost is twofold for an endometriosis patient: the cost of medical treatments and the cost of lost productivity. The available literature and data suggest that endometriosis impairs health-related quality of life and work productivity and is a considerable burden on patients.
Each affected patient lost on average 10.8 hours of work weekly, mainly owing to reduced effectiveness while working. Loss of work productivity translated into significant costs per patient/week, from US$4 in Nigeria to US$456 in Italy.
Clearly the hurdles to care for endometriosis are multidimensional and require an immense amount of resources, dedicated time, and access to specialized medical care. For patients already burdened with illness, navigating a broken healthcare system and receiving inadequate care only further detracts from their quality of life.
The economic burden associated with endometriosis treated in referral centers is high and is similar to other chronic diseases (diabetes, Crohn's disease, rheumatoid arthritis). It arises predominantly from productivity loss and is predicted by decreased quality of life.
As a patient, being informed about available treatments will help you advocate for your health needs and guide you in selecting the most appropriate options. Unfortunately, the onus is on the patient to become informed and educate the world and the medical community about endometriosis. Misinformation and myth has long dictated the approach to treating endometriosis. The next articles in the Endometriosis Series provide a detailed look at the different types of treatments available for endometriosis, including surgery, hormonal medications, and complementary and alternative therapies.
For the next article in the Endometriosis Series, see Surgical Treatment for Endometriosis
Endometriosis Series
- Endometriosis 101
- Symptoms of Endometriosis
- Causes of Endometriosis
- How Endometriosis Is Diagnosed
- Treatments for Endometriosis
- Surgical Treatment for Endometriosis
- Hormonal Medications for Endometriosis
- Complementary and Alternative Therapies for Endometriosis
- Endometriosis in Adolescents and Teens
- Endometriosis Resources
- Endometriosis Books