March is Endometriosis Awareness Month, an initiative that takes place across the globe to raise awareness of a disease which affects an incredible amount of women.
Endometriosis affects almost 200 million women worldwide (source #1), and about 1 out of every 10 women in the United States, regardless of ethnic and social background. Many women remain undiagnosed so their suffering continues untreated.
Many celebrities have tried to shed light on endometriosis, a disease that’s rarely spoken about. In a TV interview, Molly Querim openly talked about her struggles with endometriosis pain. The comedian and actor Amy Schumer announced on Instagram that she had a hysterectomy and an appendectomy to treat endometriosis. She wanted to share her story to raise awareness, because "so many people don't even know the word 'endometriosis.'"
What is endometriosis?
Endometriosis is overall a quite common gynecologic disease. It is defined by the presence of endometrial cells (from the inner lining of the uterus) found outside the uterus (womb). Abnormal (ectopic) locations of endometrium are most frequently found in the pelvis: —on the walls, ovaries, fallopian tubes, back of the uterus and bladder, and bowels. Rarely, endometriosis spots can be located far away from the uterus, including the lungs, diaphragm, nose, and even brain.
These endometriotic lesions can be found on the surface or deep within the abnormal location. They could be large or small, new and old—all factors that can contribute to the variety and severity of the symptoms.
In response to the normal changes of estrogen hormone levels in a woman's body, endometriotic lesions can become inflamed or bleed, which is what causes the pain. Over time, these chronic lesions can form scar tissue.
What are the endometriosis symptoms?
The primary symptom of endometriosis is experiencing pain during or before menstruating, during intercourse, bowel movements, and even urination. Women with endometriosis may experience pain only during specific moments mentioned above or chronically. Other symptoms include nausea or stomach bloating, and women may also experience fatigue, depression, or anxiety. A rare symptom is sometimes infertility. Sometimes, endometriosis is diagnosed when it is discovered during an unrelated surgery.
When do I need to worry that I’m experiencing endometriosis pain?
We know that cramps during menstruation are normal. Plus, pelvic pain, related to cycles or not, is not necessarily a sign of endometriosis.
But, when women experience significant discomfort—pain that necessitates taking pain control medications or missing school or work—they should raise awareness with their physician or gynecologist.
Unfortunately, there isn’t a way to prevent or cure endometriosis right now. However, early diagnosis and management can help control symptoms and even halt its progression in the body, so it’s important to talk regularly with your doctors and monitor any potential symptoms
Can endometriosis impact fertility?
Endometriosis can impact fertility in a few different ways.
Most critically, it can cause infertility because chronic inflammation and scarring could affect key reproductive organs, like the fallopian tubes and ovaries. Tubes can get scarred, inflamed, or blocked, and ovaries may develop ovarian cysts (endometriomas), which can affect the quality of eggs. Research indicates that endometriosis may also affect how the uterine lining works and prepares for the establishment of pregnancy.
An indirect impact of endometriosis is painful intercourse, which can affect the quality and regularity of sex. Plus, any associated depression and anxiety may only worsen the situation.
At the moment, there is no known way to prevent endometriosis. However, we’re optimistic. There’s a significant amount of research being conducted to understand how endometriosis spreads, and why endometriosis occurs in some but not all women. Increased awareness, means many women may be diagnosed earlier, which can slow the development and impact of endometriosis on a woman's body and life. So, listening to your body is the first crucial step.
Zondervan KT, Becker CM, Missmer SA. Endometriosis. N Engl J Med 2020; 382:1244-56.