In case you don’t know—and odds are you probably don’t—March is Endometriosis Awareness Month. But what is endometriosis, and why are celebrities such as Tia Mowry-Hardict always talking about it?

Here are 10 things you should know about the pervasive disease and what you can do to help bring awareness:

1. What Exactly Is Endometriosis?

Endometriosis is a disease affecting the uterus that causes abnormal growth of endometrial glands and lesions outside of the uterus. The symptoms vary widely among those affected. They include, but are not limited to, pain during intercourse and bowel movements, pelvic pain, excessive cramping before, during, and after periods, and even infertility.

The physical symptoms alone can be devastating, but there are also less visible symptoms of this disease. Endometriosis can also make it harder for those suffering to participate in sexual and romantic relationships, lead to higher rates of depression, higher medical bills, poor productivity and inability to work, among other things. 

 

2. It Is Extremely Common. 

Endometriosis is an unfortunately common disease. In a 2019 study published by the  American Journal of Obstetrics and Gynecology, endometriosis was shown to have been diagnosed in more than 4 million reproductive-age women.

But, because it is a disease that is often misdiagnosed or not diagnosed at all, it is likely that about 6 out of 10 cases of endometriosis are undiagnosed. It is a progressive disease, which means it can get worse as years go on, especially when left undiagnosed or untreated.

 

3. It Is Often Left Undiagnosed. 

According to a study published by the National Center for Biotechnology Information, it takes an average of 6.7 years for patients aged 18 to 45 to be diagnosed with endometriosis. Most women report symptoms around puberty, so this delay in diagnosis is alarming. It means more women are suffering for longer than necessary, and the disease is allowed to progress. Endometriosis symptoms are often mistaken for something else, downplayed, or downright ignored by medical professionals.

 

4. History of Endometriosis.

Endometriosis has been around as long as uteruses. According to a study published by Hindawi Journal, the first references to endometriosis-like symptoms were in Tebas, Egypt in 1500 B.C. In 1860, a man named Carl von Rokitansky gave the first detailed description of what we now know as endometriosis. It was, at the time, referred to as a “chocolate cyst.”

 

5. There Is No Known Cure. 

Unfortunately, there is no known cure for endometriosis. There are, however, treatments that can help reduce the physical symptoms. Hormonal contraceptives like birth control pills, vaginal rings, patches, and IUDs (intrauterine devices) can help manage the buildup of endometrial tissue and menstrual symptoms.

There are also surgical treatments to remove excessive tissue, but endometriosis and physical pain may return over time post-surgery. For those who are hoping to become pregnant, there are fertility treatments available. The most drastic treatment is a full hysterectomy or surgical removal of the entire uterus. What is most important is working with your doctor to decide what is the best treatment for you.

 

6. Who Has Endometriosis? 

Anyone with a uterus is at risk of suffering from endometriosis, including women and trans men. Recently, there have been more efforts to bring attention to this prolific disease and its effects. Celebrities such as Gabrielle Union, Chrissy Teigen, Padma Lakshmi, Tia Mowry-Hardict, Halsey, Susan Sarandon, Whoopi Goldberg (whose experience with the disease inspired her to start “Whoopi & Maya,” a medical cannabis company dedicated to relieving period pain and discomfort), and many more suffer from the disease and use their platform to bring awareness.

 

8. BIPOC Women And Endometriosis. 

When it comes to being ignored by doctors, BIPOC women suffer at much higher rates than White women. Racial disparities can prevent BIPOC women from being listened to, treated with empathy, and receiving the treatment for endometriosis symptoms.

Whether it’s socioeconomic disparities (racial wealth gaps and systemic lack of access to resources), implicit bias and lack of diversity in the medical field, or a plain old racist doctor, Black women and other women of color face higher obstacles when it comes to getting proper medical attention. 

According to Shape.com, less than 3 percent of all U.S. doctors are Black women. This means it’s harder for Black women to find any doctors, particularly gynecologists, that look like them. Additionally, BIPOC women have been historically excluded from medical research and trials, adding to the hurdles they face when getting reproductive care. We simply don’t know the ways endometriosis may present differently in Black women than their White counterparts, and that’s a problem.

One of the most antiquated medical ideas that is still taught in medical schools today is that Black women have a higher pain tolerance than other women. So, with a disease that largely presents as pain, you can see the issue. BIPOC women are rarely taken seriously when they go to the doctor for endometriosis symptoms.

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8. What Can You Do?

Be proactive with your healthcare. Do your own research, track your symptoms, and bring up your concerns to your doctor. If you are being ignored or gaslit about your own body and symptoms, then it might be time to find a new doctor. Unfortunately, that isn’t an option for all women, but if you feel stuck and like you’re not being heard, do your best to seek out resources in your community, including other women who share your experience.

 

9. Resources For Those Diagnosed, Especially BIPOC Women. 

The Endometriosis Resource Portal for People of Color is a fantastic resource for women of color experiencing symptoms of endometriosis or who have already been diagnosed with the disease. They provide information about the disease and treatment options, an education program, and events to learn more and connect with others who are going through the same thing. 

 

10. You Are Not Alone.

We arguably in a society that equates a woman’s worth with her ability to produce children. This is a disease that affects the reproductive system.

Endometriosis can be a source of shame and can cause very real mental health problems on top of physical symptoms. It is important that we have more open conversations about this disease and all of the different ways it can affect those who suffer from it. However, if you are suffering from endometriosis, know that you are not alone and there are resources available to you.