The American Congress of Obstetricians and Gynecologists:
Improving Healthcare for Endometriosis Patients
Casey Berna, Patient Advocate
Proposal: By combining the knowledge and experience of endometriosis advocates and medical professionals, with ACOG’s dedication to “continuously improve health care for women and lead advocacy for women’s health care issues,” new standards of care can be set to treat endometriosis patients that will empower both patients and practitioners.
Current Challenges in Endometriosis Healthcare
Endometriosis can be overwhelming for both practitioners and patients. Endometriosis patients experience an average delay of diagnosis of up to ten years, despite the fact that 1 in 10 women suffer from this disease [Weintraub AY, Soriano D, Seidman DS, Goldenberg M, Eisenberg VH (2014) Think Endometriosis: Delay in Diagnosis or Delay in Referral to Adequate Treatment? JFIV Reprod Med Genet 2:127]. In his 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.” It is also not surprising that women of color, transgender patients, and women in underserved communities often experience a greater delay in diagnosis and more obstacles to care.
Part of the delay of diagnosis can be attributed to the endometriosis myths that are prevalent among the medical community. Endometriosis does not only impact women in their 30’s and 40’s, endometriosis symptoms can be experienced at the time of first menstruation, and for some patients, even before. Early diagnosis and intervention for young endometriosis patients is crucial to improving their physical and emotional well-being, their fertility and their overall quality of life.
Another delay in care is that endometriosis is often seen as a fertility disease only impacting reproductive organs. This leads to the failure of the treating practitioner to adequately assess the patient for the many symptoms of endometriosis. Endometriosis can be present on the bowels, the bladder and ureters, the appendix, the gallbladder, the pelvic sidewalls and even in distal sites like the lungs and the sciatic nerve. Endometriosis does not only present as painful cramps, pain with ovulation or pain with intercourse. Endometriosis can also present as constipation, diarrhea, extreme fatigue, frequent urination, back and leg pain. These symptoms must be assessed and suspicion of endometriosis must be vocalized to the patient by the practitioner as soon as possible.
Another challenge for practitioners, especially those who serve patients at subsidized health clinics in underserved communities, is how to officially diagnose and treat endometriosis patients. When patients present with extreme pain, usually ultrasounds or pelvic MRI’s are ordered. Patients exhibiting bowel symptoms are sometimes referred out to gastroenterologists to have a colonoscopy. Some practitioners are unaware that endometriosis does not show up any of these tests (with the exception of ovarian endometriomas and significant bowel nodules) and assure patients that they do not see anything concerning, leading to further delay inaccurate diagnosis and critical intervention. Sometimes practitioners will find endometriomas during an ultrasound and are unaware that it is often a sign that a patient has accompanying disease throughout her pelvis. Ideally, a practitioner will go over a patient’s symptoms and have an idea as to which areas in the pelvis endometriosis is potentially impacting. It is important for the practitioner to empower the patient by sharing these thoughts.
The next great obstacle for endometriosis patients is getting an official diagnosis and access to proper treatment. Endometriosis is tissue present throughout the pelvis in places where it shouldn’t be and does not naturally occur, resulting in fibrosis, adhesions, an altered immune response and inflammation throughout the body. The gold standard of treatment, which is currently not recognized by ACOG or insurance companies, is to excise the disease, including meticulously removing it from the bowels, bladder and any other implicated organs including the appendix or gallbladder. The tissue removed is sent to pathology for an official diagnosis where confirmation of the disease can be attained. Completely removing the disease in a timely manner removes the source of pain and inflammation, improves fertility and leads to a greater quality of life.
To avoid multiple surgeries, which can cause greater physical and emotional trauma, the patient’s first surgery should be with a dedicated, high volume endometriosis surgeon whose goal is to be able to remove all of the disease in one surgery via excision, instead of primarily going in to look for or partially treat some of the disease. If a patient has suspected cancer they are sent to an oncologist to have all of it removed. Endometriosis patients need to be sent to a specialist to get the same level of care they need and deserve. Unfortunately, due to a lack of standards in care for treating endometriosis, many patients undergo non-excision surgeries which can result in an under treatment of the disease which can profoundly impact the quality of life and fertility of patients. Moreover, many of these patients will also be placed on costly suppressive medications, which do not treat the disease and often result in negative side effect profiles.
The greater endometriosis advocacy community struggles with the question of how to get appropriate surgical intervention to patients, especially patients in underserved communities who do not have excellent insurance or the financial resources to pay a specialist out of pocket. The first hurdle is recognizing all of the implications of disease in endometriosis patients in a timely manner and making the patient aware of the disease. Once disease is suspected, unfortunately, access to excision surgery may not be available to all patients at this time. The challenge ACOG must undertake is not only to work with advocates on changing insurance policies to recognize excision surgery and reimburse surgeons appropriately, but to also teach practitioners who do not know how to perform excision, how to care for endometriosis patients using the skills they do possess and the limited tools accessible to their patients.
As discussed above, going over a symptom check list with a patient and giving them a possible diagnosis can be life changing. Patients can go over the span of a decade, suffering severe pain and other invasive symptoms, all the while not having a known cause for their pain. Thinking about endometriosis and saying the word endometriosis to a patient will make all the difference.
While there are many complexities to pelvic pain and various reasons as to why a patient could be experiencing pain, endometriosis is often the most common cause of pelvic pain and needs to be a primary consideration. Suspecting endometriosis and then validating the patient's pain and experience will also be life changing for a patient. Having doctors understand the many implications of the disease is extremely encouraging for patients who in the past have often been made to feel that they are crazy or that their suffering is in their head.
Birth control can be an effective first line of treatment for patients, especially those without access to proper surgery. However, as with all medical therapies indicated for the disease, it is important for practitioners and patients to both understand that this is just palliative care, as it will just mask the symptoms of endometriosis. Again, practitioners need to stress that the gold standard of treatment is excision surgery with a specialist. Drugs such as GnRH agonists and antagonists may offer palliative care, but can have serious side effects and are not curative nor do they improve fertility. Being on more than two doses of Lupron®, for example is considered off-label usage and can have devastating long lasting effects on patients. Pregnancy also does not cure endometriosis and neither do radical hysterectomies. If the ovaries and uterus are removed and the disease remains throughout the pelvis, it will still cause pain. Endometriosis lesions contain very high levels of aromatase enzyme, which leads to production of significant quantities of estrogen, which is also produced in adipose tissue, and patients take in estrogen from the food they eat or the chemicals around them. Endometriosis is experienced in women who are postmenopausal for those same reasons. [Bulun et. al.]
Endometriosis patients can also benefit from nutritional changes to their diet to reduce inflammation. Pelvic floor therapy, acupuncture, yoga and other multi-disciplinary treatments can also help support patients until they have access to excellent surgery.
Endometriosis patients are often in physical and emotional crisis and can benefit from mental health support through both individual counseling and through support groups. Patients need to be directed and encouraged to join quality support groups with other patients both online and in person. Connecting with other patients who understand can be empowering and help combat the depression and anxiety often associated with the disease. There is a hopelessness that comes with the physical and emotional symptoms of endometriosis. The pain, fatigue, infertility can cause patients to withdraw from social activities, cause tension in their relationship, causing patient isolation. Patients are also forced to miss work due to ramifications of the disease causing further isolation. Difficulty in obtaining and maintaining employment, combined with the lack of affordable and appropriate interventions for patients, causes financial hardship for many patients.
Recognizing the disease, validating patients’ pain and educating patients about the disease would transform healthcare for endometriosis patients.
Moving Forward Together
The endometriosis community is facing a public health crisis due to the abundance of misinformation circulating about the disease, even from perceived thought leaders and influential organizations, a significant lack of awareness, continued delays in diagnosis and mistreatment of patients. ACOG has the opportunity to be a trailblazer as to how endometriosis is being talked about and treated in the exam room. With the help of endometriosis educators, social workers and expert medical professionals, the many medical professionals you serve can be better equipped to help the one in ten women that suffer with endometriosis. With ACOG’s help, patients will have better access to endometriosis resources, as well as a hope to have an early diagnosis. Together, the statistics, “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” can be changed.
Women in their thirties and younger can’t remember a time when their gynecologist didn’t check their breasts for lumps or give them annual pap smears to screen for cancer or other diseases. But, there are probably many women who are much older who do remember such a time. These prevention methods were put in place by doctors and advocates dedicated to making sure that patients didn’t go without being diagnosed, because they learned that early diagnosis and intervention could change the course of a patient's’ life. Research has shown that early diagnosis and intervention is also life changing for endometriosis patients.
It is unrealistic to think that ACOG can immediately educate all of their practitioners in the art of surgical excision. This impactful endometriosis surgical treatment is difficult and takes years to master, just like treating and removing cancer. But there is a desperate need for new standards of care for all practitioners and this proposal is a call to action for ACOG to immediately start working with the endometriosis community to improve healthcare for patients. Practitioners need more tools to adequately recognize the disease, validate patient's’ pain, educate patients about the disease and treat the disease in an appropriate and timely manner.
It would be fairly easy to create tools to support and educate ACOG’s members and the patients they treat. An in office checklist can be created and supplied for practitioners to use in the exam room with patients to check over their symptoms. This checklist would easily screen whether or not the patient has the possibility of having endometriosis. This quick screening could take as long as a breast exam. There are also tools in which patients can track their period symptoms as they may relate to endometriosis to provide more information to practitioners. Brochures could be easily created for suspected endometriosis patients for them to bring home in order to do more research.
Giving something a name is a very powerful thing. Many patients wish that they had heard the word endometriosis sooner in their tumultuous health journey. Many patients wish that they had known sooner that their bowel symptoms, fatigue, bladder symptoms, leg pain, back pain, painful cramps, painful intercourse and infertility could all be related. Can you imagine feeling so sick, for so long and not knowing why? Can you imagine having many doctors do countless tests and exams and finding nothing? Can you imagine getting a hysterectomy with the hopes of feeling better, only to still have pain? Can you imagine how that can impact a patient emotionally? Many patients cry after waking up from surgery when they hear they were diagnosed with endometriosis. They attest to finally feeling like they were not just being “crazy” all of those years. Recognizing the disease, validating patients’ pain and educating patients about the disease would transform healthcare for endometriosis patients.
By working with dedicated endometriosis advocates and professionals, ACOG can make health care for endometriosis patients safer and more effective. ACOG has always been a leader in women’s healthcare, an unapologetic champion of advocacy for women’s needs. The ACOG Code of Professional Ethics states that “obstetrician-gynecologists have an ethical obligation to serve as the patient’s advocate and exercise all reasonable means to ensure that the most appropriate care is provided to the patient.” Endometriosis patients, advocates and expert medical professionals in the field are asking ACOG to change their standards of care for patients and put in place commonsense policies that will not only alleviate the burden of care on practitioners, but most importantly, alleviate the suffering of endometriosis patients nationwide. This call to action aligns with ACOG’s core values of access for all women to high quality safe health care, high ethical standards and advocacy for women. ACOG has established their role as the authority on women’s health information for patients, providers, organizations and governments. As the authority on women’s health, ACOG needs to immediately start working with advocates and experts in the endometriosis field to change standards of care for the 176 million women that endometriosis impacts worldwide.