“What is endometriosis?” was digitally searched more than 31 million times in 2018. While the disease affects an estimated 190 million women worldwide, many have not heard of the condition, let alone its symptoms.

Dr. Richard Burney, director of the University of Alabama at Birmingham’s Division of Reproductive Endocrinology and Infertility, provides insight on endometriosis symptoms and treatment options.

What is endometriosis?

Endometriosis is defined by the presence of endometrium, or uterine lining, in locations outside the uterus. It is predominantly found in the lining of the pelvis, ovaries, intestine and bladder but can also be found in sites more distant to the uterus, such as abdominal incisions, the lungs and, in rare cases, the brain.

In normal menstrual cycles, the endometrium grows in thickness to support a potential pregnancy. If pregnancy does not occur, the endometrial lining is shed via the cervix during the process of menstruation, commonly known as a period. However, studies show 94% of women have lining that is shed into the pelvis, known as retrograde menstruation, during the time of the period. Most of this blood and tissue is cleared by the immune system, but for some women, the tissue implants on surfaces and organs in the pelvis and becomes endometriosis. The endometriosis lesions menstruate in response to cyclic hormones, resulting in pain and scarring in the pelvis.

Dr. Richard Burney, director of the UAB Division of Reproductive Endocrinology and Infertility. (Lexi Coon / UAB)

Who is affected by endometriosis?

Endometriosis is a common gynecologic condition affecting one in 10 women of reproductive age and as many as one in three women with otherwise unexplained infertility. For many women, the onset of endometriosis symptoms occurs during adolescence. During the reproductive-age years, this condition can result in debilitating pain and/or infertility. The ovarian form of the disease, known as an endometrioma, is particularly challenging from the fertility perspective. The prevalence of endometriosis in menopausal women is very low, potentially due to a reduction in circulating estrogen.

What are the symptoms?

Endometriosis is a leading cause of chronic pelvic pain, particularly pain before and during menstruation, during intercourse or during bowel movements. Many women with endometriosis also note low back pain and headache at certain times during the menstrual cycle. It is also associated with vaginal spotting for two or more days, particularly in women with infertility.

Additionally, many adolescents, teens and young women suffer for years with painful periods. Inability to conceive for a duration of 12 months in women with regular menstrual cycles or six months in women with irregular menstrual cycles is another indication to see a health care provider.

Are there different forms of endometriosis?

Three distinct forms of endometriosis are recognized. Peritoneal endometriosis describes the finding of lesions on the lining of the pelvis. Ovarian endometriosis is when lesions shed within the ovary. Deep infiltrating endometriosis occurs when lesions are in deeper layers of tissue or organs.

Endometriosis is also categorized by stages based on the extent of one’s condition. Stage 1 is often considered minimal disease, typically lesions found in the lining of the pelvis. More severe disease that affects ovaries and/or deep tissues are more often categorized as stage 4. Burney cautions that the staging system does not necessarily correlate with pain levels.

How is endometriosis diagnosed?

Diagnosis of endometriosis is challenging due to the absence of a convenient laboratory test, which has resulted in a nearly seven- to 10-year delay from the onset of symptoms to definitive diagnosis. Surgery, typically laparoscopy, provides a diagnosis and an opportunity to treat lesions.

In the absence of laboratory or surgical tests, endometriosis is suspected based on medical history and pelvic examination with pain mapping. An imaging study such as a pelvic ultrasound can help identify ovarian endometriosis, and MRI has proved useful for the detection of deep infiltrating endometriosis.

What are treatment options for endometriosis?

Management of endometriosis is contingent on the goals and priorities of the patient. It can require multiple practitioners across a variety of specialties.

For patients prioritizing fertility, both laparoscopic surgery and/or fertility treatment are evidence-based approaches. For patients who are more interested in controlling endometriosis-associated pain, a two-step approach is recommended. The first step is treatment of existing disease by ablating lesions, typically through surgery. The second step is prevention of recurrence by reducing endometrium from entering the pelvis.

Additionally, ovarian endometriosis, which forms fluid-filled cysts can transition into types of ovarian cancer. It is important for women with these cysts to have regular examinations. For women with symptomatic cysts, surgical removal can be considered.

UAB Department of Obstetrics and Gynecology has been ranked the No. 5 program in the nation by U.S. News & World Report.

This story originally appeared on the University of Alabama at Birmingham’s UAB News website.