What to Look for in a Gynecologist
By: Casey Berna, RN
Seeing a new doctor can invoke anxiety for almost everyone, but it can be worse for endometriosis patients, especially for black women with endometriosis. With a diagnostic delay of 7-10 years, endometriosis patients often spend years being dismissed and misdiagnosed, before finding a provider that they can trust. Black women are at a higher risk for being dismissed on account of provider racial bias, with their pain often being ignored or under-treated. Endometriosis patients can find themselves in a state of physical and emotional crisis as they search for proper care, leading them to feel powerless. Educated patients, armed with the right questions and information, can feel empowered as they search for a potential diagnosis and treatment options.
Endometriosis is a complex disease, and patients often need a multidisciplinary team to thrive. This team can consist of an endometriosis excision specialist, a pain management specialist, pelvic floor therapist, and even a mental health provider. Groups such as Nancy’s Nook and Endometropolis can offer lists of specialists, while patients can also access files which provide questions to ask when seeking out an endometriosis specialist. But some patients need a referral from their regular gynecologist to see a specialist, while other patients who travel for surgery often need the support from their local gynecologist post-op. A patient who may suspect endometriosis may need to first have a conversation with their gynecologist to get more information.
Also with so many barriers to access expert endometriosis care, some patients must rely on their gynecologist while they figure out how to afford the care they need. With so many practitioners lacking in endometriosis education and awareness, it can be hard to find a gynecologist who can offer adequate support. Below are some ways to assess whether or not a gynecologist is capable of supporting you as you struggle with endometriosis:
Is the doctor normalizing your pain? All too often, endometriosis patients, Black women in particular, are told that their pain is normal and their many endometriosis symptoms are not taken seriously. With up to 80% of black women being shown to have fibroids before the age of 50, doctors will sometimes fail to assess whether a patient who has fibroids also has endometriosis, as some of the symptoms can overlap. If a doctor is dismissing your pain or failing to recognize endometriosis symptoms, it is important to search for another gynecologist. Remember, you are the expert of your own body and experience.
Does the gynecologist understand the complexity of the disease and the benefit of multidisciplinary care? Endometriosis by definition is disease that exists outside of the uterus, causing inflammation and adhesion throughout the body. Endometriosis can not only impact the reproductive organs, but also impact the bowels, bladder, appendix, and extrapelvic sites as well. After recommending hormone treatments and/or doing a quick ablation surgery, most doctors will recommend a hysterectomy, even though it doesn’t treat endometriosis. While a hysterectomy can help with adenomyosis, it will not help treat endometriosis and can leave patients at risk for developing heart disease. Black women are more likely to undergo a hysterectomy for benign conditions, such as endometriosis. If you feel like your doctor isn’t aware of all treatment options, or is pushing a treatment you are not comfortable with, it is important to seek care elsewhere. Ideally your gynecologist will recognize the value of expert endometriosis multidisciplinary providers, refer you, and continue to be a supportive part of your team in way that you need.
Does your gynecologist take money from pharmaceutical companies? While some hormonal medications, like birth control, can help lessen symptoms for some time, and can be an accessible tool to help manage the disease. There are other medications providers prescribe that also do not cure or shrink the disease, yet, can have long term impacts on patients. Medications such as Lupron are often offered to patients by gynecologists, before referring them to multidisciplinary care. These medications are even sometimes prescribed to patients for longer than the recommended 6-months. Orilissa is a recent drug on the market that is getting a lot of attention and getting prescribed by many doctors for fibroids and endometriosis, despite the lack of long term studies looking at the potential side effects for patients. A recent ICER review showed concerns about this medical treatment. If your doctor is strongly recommending these drugs, ask if they have a financial connection to the manufacturers. Before considering any medical treatments, look to patient groups to learn more about the positives and negatives associated with each treatment as well as researching more holistic approaches to symptom management.
Is your doctor competent? Finally, endometriosis patients deserve competent providers who understand that a pelvic exam and a vaginal ultrasound can hurt, and take extra precautions to be gentle. Endometriosis patients deserve a gynecologist who doesn’t get defensive, or arrogant when faced with the difficult clinical challenges that endometriosis presents. Endometriosis patients deserve a medical provider who will look to collaborate with other health professionals to provide the best quality care. Finally, gynecologists need to be aware of racial health disparities and any implicit and explicit biases they may have in order to give Black women the healthcare they need to thrive.
Ultimately, it is important to remember that medical providers work for the patient, and at the end of the day to stay a part of your medical team, doctors need to prove themselves as open, educated, and compassionate professionals.