For some women, their menstrual period includes headaches, low mood, nausea, and cramping. Over 80% of women experience menstrual pain in their lifetime. One reason for period pain is endometriosis, a condition in which tissue similar to the endometrium —the lining of the uterus—grows outside the uterus. The often misdiagnosed condition affects about 176 million women worldwide and about 11% of American women during their childbearing age. It is most prevalent among women in their 30s and 40s, leading to scar tissue and adhesions that bind to your organs and can make it hard to get pregnant.

Unfortunately, there is no cure, and even after menopause—on average occurs at 50—you can experience some residual effects. “Depending on how significant your endometriosis was, you could still have pelvic pain because during the course of your reproductive life you could have formed scar tissue,” says Tia Jackson-Bey MD, MPH, a reproductive endocrinologist, and infertility specialist and board-certified obstetrician-gynecologist at RMA of New York. “That scar tissue doesn’t go away even though you’re not getting your period and your ovaries aren’t functioning,” she says. However, as your estrogen levels decrease, symptoms can subside, though that may not be the case if you take hormone replacement therapy.

Although endometriosis is a fairly common disorder, it isn’t always easily diagnosed. It can take four to 11 years to receive a proper diagnosis from the onset of pain. Furthermore, some women with the condition may not have noticeable symptoms, and/or it is misdiagnosed because their pelvic pain can be attributed to other issues such as irritable bowel syndrome and other inflammatory diseases or “normal” period pain.

Signs and symptoms of endometriosis

Still, Black women are more likely to be misdiagnosed as their pain is said to be caused by something else, as well as there was a time when it was believed that Black women weren’t affected by the condition as often as white women. “We need to address provider bias,” says Dr. Jackson-Bey. “Even if you look today, it will say risk factors: white, thin, smoker,” she says.

Although pelvic is the most common symptom, other typical symptoms can include:

• infertility
• pain during sexual intercourse
• painful urination during menstrual periods
• pain during bowel movements during menstrual periods
• abnormal or heavy menstrual bleeding or bleeding between periods
• other gastrointestinal problems, such as diarrhea, constipation and/or nausea
• severe lower back or abdominal pain that occurs during your menstrual period

If you are experiencing any of these symptoms, you should see a healthcare provider because while some pain can occur from having your menstrual period, you shouldn’t feel as if you cannot function. “Endometriosis may start as menstrual-related pains, but with age, because of the scar tissue formation, cyst formation in the ovaries, and even inflammation in the pelvis, it can change your pain receptors,” Dr. Jackson-Bey. This can mean that your pain becomes more severe over time as your nerve fibers can become more sensitive from all the chronic inflammation. “You may hear people describe the pain as feeling like their womb, legs, or lower back being on fire. That’s not an exaggeration; that is how they are sensing the pain due to the pathology, she says.

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Diagnosis and treatment of endometriosis

While there isn’t a cure for endometriosis, the pain and symptoms can be managed. “The true way to diagnose it is to do surgery, to remove a tissue sample to be examined under a microscope by a pathologist,” says Dr. Jackson-Bey. If tissue similar to the endometrium is found on organs outside the uterus in areas such as the ovaries, fallopian tubes, the bladder, bowels, and rectum, you probably have endometriosis. “If it’s endometriosis, typically it will respond to oral contraceptives and IUD,” she says.

Contraceptives reduce estrogen, and one of estrogen’s functions is to grow the uterus lining. “By turning down estrogen with hormonal contraceptives or Lupron, we keep all of those cells very quiet and don’t allow them to go through those growth cycles,” she says.

Other forms of treatment also include:

• Pain relievers: over the counter medications like ibuprofen can help but not always.
• Gonadotrophin-releasing hormone agonists (GnRH): drugs such as Lupron or Elagolix are used to suppress estrogen production, prevent menstruation, and induce artificial menopause.
• Surgery: is performed to remove or destroy endometrial growths.

Currently, the exact cause of endometriosis is unknown. But genetics could play a role. “If your mother, a sister, or a cousin has been diagnosed, there can definitely be a family link,” says Dr. Jackson-Bey. One of the oldest theories is that the disorder is due to retrograde menstruation, which is when your period blood flows back into your pelvis instead of leaving your body through the vagina. Still, “most women seem to have that to some degree,” yet don’t all develop endometriosis.

While there is no cure for endometriosis, treatment options can manage your symptoms. You should also contact your doctor if you believe that you have the condition to get diagnosed and start treatment as soon as possible.