Let’s Talk about Endometriosis
Endometriosis is a condition that affects 190 million girls and women of reproductive age around the world. It is a chronic disease in which the tissue that lines the uterus grows outside of it, causing inflammation, scar tissue, and sometimes cysts. Although endometriosis is common among women, it is often misdiagnosed and mistreated.Symptoms
The exact cause of endometriosis is unknown, but it is believed to be related to hormonal imbalances. The symptoms of endometriosis include painful periods, pain during intercourse, pain during bowel movements or urination, infertility, and fatigue. Diagnosing endometriosis can be difficult as the symptoms are similar to other conditions such as pelvic inflammatory disease and irritable bowel syndrome. The most accurate way to diagnose endometriosis is through laparoscopic surgery, which involves inserting a small camera into the abdomen to look for abnormal tissue growth.
Treatment
There are treatment options to help manage symptoms, reduce the progression of endometriosis, increase fertility, and improve quality of life. However, there is currently no cure for the disease.Medication
Nonsteroidal anti-inflammatory drugs (NSAIDs) and acetaminophen
Function: To help relieve endometriosis-related pain
Access: NSAIDs are available over the counter and by prescription.
Combined (Estrogen-progestin) contraceptives
Function: Suppresses the ovaries, which may slow the progression of endometriosis and reduce pain and menstrual bleeding.
Examples: Birth control pills, patches, and vaginal rings.
Progestin
Synthetic form of the hormone progesterone
Function: Shrink endometrial growths
Examples: Norethindrone and Medroxyprogesterone
Gonadotrophin-releasing hormone (GnRH) agonists
Function: Suppresses the ovaries, lowering estrogen levels; shrinks endometrial growths, reducing menstruation and endometriosis-related pain
Examples: Leuprolide (given by injection) and Nafarelin (a nasal spray)
Note: GnRH agonists may cause side effects such as hot flashes, vaginal dryness, reduced libido, and mood swings, among others.
GnRH antagonists
Function: Lower estrogen levels to reduce pelvic pain and lessen heavy bleeding during periods.
Examples: Elagolix and Relugolix.
Danazol
Function: Reduce endometriosis-caused pain
Note: Can cause side effects, including acne, hirsutism (excessive hair growth in women), and a deepening of the voice.
Aromatase inhibitors (AIs)
Function: Lower estrogen levels, helping to reduce pain.
Note: Long-term use can cause bone loss and the development of ovarian cysts.
Surgery
Upon provider consultation, Laparoscopic surgery can be used to remove endometriosis lesions, adhesions and scar tissues.
Please speak to your healthcare provider to determine a treatment that works best for you and your body.
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Do my symptoms sound like endometriosis?
How is endometriosis diagnosed or can it be confirmed that I have it?
Are there medications available to treat endometriosis?
What side effects can I expect from medication use?
Do I need surgery, or are there any simple treatments I can try first?
Under what circumstances do you recommend surgery?
Will endometriosis impact my ability to become pregnant?
Can treatment of endometriosis improve my fertility?
Can you recommend any alternative treatments I might try?
What is your treatment plan for me?
How will we know if this treatment is working?
Can women with endometriosis get pregnant in general?
If not endometriosis, what else could it be?
If women in my family have endometriosis, does this raise my chances of being diagnosed with it?
Are there medications I may be taking that could aggravate or accelerate my condition?
Are there things in my lifestyle that could be aggravating or accelerating my condition?
What kinds of risks and side effects come along with each treatment option?
Are there changes I can make in my lifestyle to better fend off endometriosis?
Do I need to stop drinking alcohol or caffeinated beverages?
Will my chosen treatment option be permanent or will endometriosis come back?
Know the Facts
How Endometriosis Affects Women in the United States
50-80% of women with pelvic pain have endometriosis.
Women with endometriosis are more likely to have infertility or difficulty getting pregnant.
Endometriosis can start with a first period, but it's most commonly diagnosed in women in their 30s and 40s.
Women may suffer from endometriosis for an average of 7-10 years before they receive a diagnosis.
Disparities among Black Women
Research shows that non-white women were diagnosed at a later age although they presented with the same symptoms.
Black women are less likely to receive timely medical treatment and more likely to undergo major surgery, rather than minimally invasive surgery or less invasive procedures.
Black women undergoing surgery for endometriosis are more likely to have surgical complications even after adjustments are made for the surgical approach and individual patient factors.
Black women who had any surgery for endometriosis had a 71% higher chance of complications 30 days after the procedure.
Patient Support and Advocacy
Through education, advocacy, and community-building efforts, we can work towards better understanding, diagnosing, and managing endometriosis, as well as improving care and support for those living with it. Below are some patient support groups and advocacy organizations to connect with. Check out our recent Policy Explained posts on our Instagram page (@bhexplained) to learn more about related policies. 
Endometriosis Resources
A self-help organization of women and families with endo, doctors, scientists, and others interested in exchanging information about the endometriosis disease.
The Endometriosis Foundation of America
EndoFound strives to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research.
Endometriosis Resources contd.
A Black-women-led organization advocating for African American women and women of color living with endometriosis.
A trusted resource for learning more about period health, uterine health conditions, and general women’s health. The information and tools provided on the guide were developed by experts and patient advocacy organizations.
Society for Women's Health Research ToolKit
The Society for Women’s Health Research (SWHR®) is a nonprofit thought leader dedicated to promoting research on biological sex differences in disease and improving women’s health through science, policy, and education.
Conclusion
As a chronic disease experienced by millions of women around the world, endometriosis awareness and education are critical to improving health outcomes in our communities. If you or someone you know is experiencing any of the symptoms mentioned, please seek medical attention. With proper diagnosis and treatment, individuals with endometriosis can manage their symptoms and lead fulfilling lives. Please refer to the BHE Foundation’s Health Directory to assist in finding healthcare providers to meet your needs. 
About the Author: Stephanie S. Ogonuwe, BS
Stephanie serves as Founder of Policy Explained and Director of Healthcare Advocacy. She is a recent graduate from The Ohio State University where she earned a Bachelor of Science in Public Health with a minor in Women, Gender, and Public Policy. Stephanie is pursuing careers in medicine and public policy and enjoys music, photography, and traveling.
