Stories & Advocacy
Historically, many gynecologists believed that endometriosis was a disease confined almost exclusively to White women, leading to BIPOC patients with endometriosis symptoms to be overlooked—and this isn't a problem confined to the past.  This is an experience Tamien Elder, a community member of Endo Black, can attest to.
Throughout her teens Tamien experienced painful menstrual cycles so her parents took her to their doctor where she was quickly prescribed birth control, an offer her parents denied because of her age. Tamien reflected on this experience, “It’s really disappointing when you think about it. I came in wanting help and all my doctor did was prescribe me this “band-aid” of a solution and told me I was going to be fine. Now that I’ve done my own research and found resources like Endo Black and Visana, I can’t help but think how much easier things would have been if my doctor cared just a little more.”
In March of 2019, years after that first appointment with her doctor, she was diagnosed with Ovarian Endometriosis. Studies show that quick diagnosis and fitting treatment of this disease can prevent its effects on quality of life and psychological disorders, including anxiety and depression.  Because Tamien did not receive this quick diagnosis, she was led to believe that surgery was her only option—a decision she describes as "physically, emotionally, and mentally draining.” and although she is at peace with her decision to go through with her surgery, like many other patients, she describes her diagnosis as being both relieving and lonely.
The consequences of health disparities behind endometriosis have created difficulties in diagnosis and treatment of BIPOC endometriosis patients. Most women with endometriosis express experiencing a form of medical gaslighting because their doctors often downplay their pain, which leads them to distrust the medical community. The stigma behind speaking about reproductive health issues left Tamien feeling alone in her journey until she turned to Google, where she found Endo Black and Facebook support groups.
Endo Black helped Tamien and continues to help BIPOC women affected by endometriosis with their journey. They work to heal the emotional and physical trauma, provide advice on disease management, and educate women experiencing endometriosis. Alongside this, Facebook support groups provide a space for women with endometriosis to support one another and create a sense of belonging.
Overall, Black women are more likely to undergo hysterectomies than White women. Among African-Americans in the United States, endometriosis is one of the most common indications for major gynecological surgery and hysterectomy. Most endometriosis admissions occurred in women aged 35–49 years, and the most common procedure was a total abdominal hysterectomy (55–60%) , leading to African American patients having the longest length of hospitalization and high hospital charges. 
Visana aspires to empower our patients to advocate for themselves as this is an integral part of a healthy endometriosis journey. We strive to remove the stigma around conversations about women’s reproductive health and create a safe place to speak openly. Throughout her journey, Tamien has picked up skills on self-advocacy in a medical setting. Although self-advocacy is an important skill to possess, it’s important that we rebuild a system that puts patients first. The lack of access to endometriosis specialists and overall lack of knowledge on endometriosis, forces patients to seek out outside resources— becoming great self-advocates but lacking support.  Visana encourages patients to have open conversations with their doctors and ask clarification questions while also supporting their patients needs.
Here at Visana we know that the current approach to women’s health is clearly not working. We recognize the health disparities faced by BIPOC patients and are ready to walk alongside them in their health journey. By promoting a holistic approach to care that is not centered simply on surgeries, we recognize all women and their individual needs. We will take the time to speak with you through our unlimited 1-on-1 messaging with certified health coaches who receive cultural competence training. We're driven to provide the best opportunities for women to receive the health resources that they need. Let us help you today.
If you've been diagnosed with endometriosis and want to share your experiences with other patients, shoot us an email at firstname.lastname@example.org and we’ll be in touch!
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 Racial and Ethnic Disparities in Benign Gynecologic Conditions and Associated Surgeries, Jacoby et. al., Am J Obstet Gynecol 2010
 Disparities in healthcare services in women with endometriosis with public vs private health insurance, Fourquet et. al., Am J Obstet Gynecol 2019
 Endometriosis in African Women, Kyama et. al., Sage Journals 2007
 Shedding light on endometriosis: Patient and provider perspectives on a challenging disease, Zale et. al., Sage Journals 2020