Cramps, fatigue, pelvic pain, bleed, pain, repeat. This is often the reality of women who live with endometriosis. Endometriosis, commonly referred to as "endo", is a common reproductive health issue occurring in 1 in 10 women. It gets its name from the word endometrium, the tissue that normally lines the uterus. Normally found within the lining of the uterus and shed with each menstrual cycle, endometrial tissue instead migrates to other areas of the body where it wreaks havoc and may make it difficult for women to become pregnant.
In the Black community, getting an accurate diagnosis of endometriosis may present with a few hurdles. Socioeconomic disadvantages, limited access to care, provider implicit biases, and misdiagnoses, play an integral role in the delay of diagnosis and treatment. Other conditions such as uterine fibroids and pelvic inflammatory disease (PID) which are prevalent in this community have more affordable and less invasive diagnostic approaches, often mimics the symptoms of endometriosis. Uterine fibroids are noncancerous tumor growths that are three times more likely to occur in Black women than their counterparts. Unlike fibroids which can be diagnosed using ultrasound, a definitive diagnosis of endometriosis requires laparoscopic surgery which is costly.
Dismissive behaviors by health care providers, who write off women’s complaints as a “bad period’’ along with the misconception that BIPOC women have a higher pain tolerance adds to delay of care which is why it takes on average 8 to 12 years from symptom onset to receive a diagnosis. It is important for the healthcare community to realize this disease can impact all aspects of life—school, career, finances, relationships, and overall well-being, and take women seriously. The symptoms may be so severe that individuals miss out on school, work, sports, or social events. Not everyone will experience all, most, or even any of the symptoms. Some symptoms include, but are not limited to:
Pelvic Pain. The pain may have a monthly pattern, i.e. being worse during your period and/or mid-cycle. Some have constant pain
Fatigue, exhaustion, low energy
Diarrhea, constipation, painful bowel movements
Bowel or urinary disorders, often associated with periods
Stomach bloating and swelling
Chronically heavy, long or irregular periods
Chronic abdominal/pelvic pain
Pelvic pain that gets worse after sex or a pelvic exam
Painful sexual activity, particularly with penetration
Significant lower back pain with menses
Allergies, migraines or fatigue that tends to worsen around menses
Crippling menstrual pain
Endometriosis is often called a “disease of theories’’ because researchers have not found a definitive cause. Laparoscopic surgery is used to diagnose as well as to remove extrauterine endometrial tissue. Although there aren’t any preventable or curative measures you can take, research has shown that reducing estrogen levels may help reduce your chances of developing endometriosis. To keep lower estrogen levels in your body, you can:
Talk to your doctor about hormonal birth control methods, such as pills, patches or rings with lower doses of estrogen.
Exercise regularly (more than 4 hours a week). This will also help you keep a low percentage of body fat. Regular exercise and a lower amount of body fat help decrease the amount of estrogen circulating through the body.
Avoid large amounts of alcohol. Alcohol raises estrogen levels. No more than one drink per day is recommended for women who choose to drink alcohol.
Avoid large amounts of drinks with caffeine. Studies show that drinking more than one caffeinated drink a day, especially sodas and green tea, can raise estrogen levels.
Although there isn’t a cure for endometriosis, symptom management is available. Talk to your doctor about your treatment options and any other concerns regarding your ability to become pregnant.
Websites:
Endocenter.org Phone Numbers (USA): 561– 274–7442 | Toll Free: 800–239–7280 The Endometriosis Research Center was founded in 1997 because of the limited research, support, education and awareness for endometriosis. The ERC strives to improve the quality of life for women and girls with endometriosis through their extensive programs and outreach efforts.
Endometriosis.org This website is a global forum for news and information about endometriosis around the world. The focus is on “international collaboration and the exchange of experiences to deliver up-to-date and evidenced based information and news about endometriosis.”
Endometriosisassn.org Phone Number (USA): 414–355–2200 | Fax: 414–355–6065 Endo-Online is a well known website that represents the Endometriosis Association, the first organization in the world to provide information on endometriosis to females who have it. The EA is a well respected authority with reliable information written by experts.
Endozone.org This website is a leading resource in connecting patients with endometriosis to clinical specialists in North America, South America and the United Kingdom. The site also provides links to the latest endo news and PubMed articles.
Videos:
Endometriosis.org on Vimeo A collection of short videos, including interviews with Hans Evers and Diana Wallis and the educational piece “You Can Fight Endometriosis” from Endometriosis.org.
Laparoscopic Excision of Stage IV Endometriosis with Dr. Jon Einarsson On April 25th, 2013, Dr. Jon Einarsson presented a live webcast with Q&A on a Laparoscopic Excision of Stage IV Endometriosis case. The event was broadcast live on SurgeryU HD, and is now available to watch online at AAGL.org.
Books:
Ballweg, Mary Lou, and The Endometriosis Association. Endometriosis—The Complete Reference for Taking Charge of Your Health. Mcgraw–Hill, 2003. Written by the founder of the Endometriosis Association and expert clinicians, this book is packed with information about managing symptoms, medications, and alternative treatments. It is primarily geared towards adult women, however there is a chapter on “Teen Endometriosis” that would be helpful for parents, family members and friends, as well as health care providers and educators who advocate for teens.
Evans, Susan MD, and Bush, Debra QSM. Endometriosis and Pelvic Pain. “Dr. Susan Evans, a recognized specialist in the treatment of endometriosis, has written an easy-to-read comprehensive summary of the up-to-date management of ‘endo’.” A free copy of Dr. Evans e-booklet “Pelvic Pain” is available for download on her website.
Mills, Dian Shepperson MA, and Vernon, Michael PhD HCLD. Endometriosis: A Key to Healing Through Nutrition. Thorsons, 2002. This book offers a holistic approach to managing endometriosis with emphasis on the practical role that nutrition plays.
Phillips, Robert, and Motta, Glenda. Coping with Endometriosis: A Practical Guide. Avery, 2000. This book addresses the psychological and emotional concerns related to endometriosis and offers practical ways to cope with chronic pain.
Social media pages to follow:
The Endometriosis Foundation of America United for Endometriosis Endometriosis Warriors of Central Florida 💛
References
Dirks, N. (2020, July 24). Misdiagnosis, mistreatment, and living with endometriosis as a Black woman. MedicalNewsToday. https://www.medicalnewstoday.com/articles/through-my-eyes-misdiagnosis-mistreatment-and-living-with-endometriosis-as-a-black-woman#No-apology
Endometriosis Resources Boston Center for Endometriosis. (2012, July 27). Boston Center for Endometriosis. https://bostoncenterendometriosis.org/2012/07/27/endometriosis-resources/
Endometriosis - Symptoms and causes. (2019, October 16). Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656
Johnson, M. (2019, July 10). I’m Black. I Have Endometriosis — and Here’s Why My Race Matters. Healthline. https://www.healthline.com/health/endometriosis/endo-race-matters
Omokha, R. (2021, February 23). Why Is It So Hard for Black Women to Get Diagnosed with Endometriosis? Shape. https://www.shape.com/lifestyle/mind-and-body/racial-disparities-endometriosis-black-women
Endometriosis | Womenshealth.gov. (2019, April 1). Womenshealth.Gov. https://www.womenshealth.gov/a-z-topics/endometriosis