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Recently, a patient made an appointment at Planned Parenthood of Illinois (PPIL) because she was suffering from heavy, painful periods and having sharp, stabbing pelvic pain that lasted for days. The pain was bad enough that it made it difficult for her to work or enjoy life, yet she thought maybe this was normal. When she came in for her visit, her provider suspected endometriosis may be to blame.

It’s urgent that we talk openly and honestly about this painful condition that affects an estimated 5 to 10 percent of all women, so we sat down with Yvonne Oldaker, our Associate Medical Director, to answer questions about this mysterious disease.

What is endometriosis?

Endometriosis happens when tissue similar to the lining of the uterus (endometrium) grows outside the uterine cavity. It is most commonly found in the pelvic cavity and ovaries but can grow on the intestines and bladder or other parts of the body. Endometriosis growths are almost always benign (not cancerous) and it is not a sexually transmitted infection.

Why do some people with uteruses suffer from this chronic disease?

What causes endometriosis is unknown, but scientists believe genetics plays at least some role in this disorder that affects girls and women of all ages, from as young as 8 through the post-menopausal years. Experts know that the hormone estrogen promotes the growth of endometriosis, so treatment often focuses on lowering a person’s estrogen levels.

The symptoms of endometriosis vary, but the most common one is extreme lower abdominal pain when having your period, though the pain can happen at any time in a person’s menstrual cycle. People with endometriosis may also experience pain during or after sex, and suffer from very heavy bleeding, constipation, diarrhea, fatigue, and infertility.

The only way to definitively diagnose endometriosis is with a laparoscopy, which allows surgeons to see the disease and take a biopsy that can be evaluated in a laboratory. Since PPIL does not perform laparoscopies, we refer patients to specialists for diagnosis. If we suspect endometriosis based on symptoms, however, it is not always necessary to get a laparoscopy before starting treatment.

How do you treat endometriosis?

When a patient thinks they may have endometriosis, the first thing we do is try to rule out other common reasons for pelvic pain, and talk with our patients about their reproductive goals. The patient we recently saw was not planning on becoming pregnant in the near future, so she started taking birth control pills to treat her endometriosis. 

The pill works by decreasing estrogen levels in a person’s body, which can suppress a person’s period and prevent the endometriosis from getting worse. Our patient was also feeling emotional about being diagnosed with a chronic pain condition, so she connected with one of our behavioral health clinicians for needed support.

Birth control pills aren’t the only treatment options and may not be right for every patient. Other options include rings, implants, or IUDs, progestins, and pain medications. If you are already on birth control, we can help you continue with the method that works best for your body. If you don’t have health insurance, we have enrollment specialists who can help you find programs that can help you see a specialist for diagnosis and treatment.

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Unfortunately, the medical system in the U.S. has a long history of disregarding the concerns and pain of women, especially Black women and women of color. Endometriosis is not uncommon—it's estimated that as many as 1 in 10 women suffer from the condition. Unfortunately, many people are undiagnosed or get diagnosed much later than they should, left to suffer in silence for far too long, even when the pain of endometriosis is debilitating. You deserve better.

If you think you may have endometriosis, make an appointment at PPIL. We are here to help.

Tags: endometriosis