Endometriosis is a painful, chronic disease that affects approximately 1 in 10 women of childbearing age. A growing number of scientific articles on infertility have shown that 2 out of 5 women with a history of female infertility, and as many as 4 out of 5 women with chronic pelvic pain, may have endometriosis.
Endometriosis often goes unrecognized by doctors or is misdiagnosed and incorrectly treated. Endometriosis can have a profound impact on quality of life, including work, education, relationships, and the ability to conceive. Endometriosis can be particularly disruptive during a woman’s period. A woman with endometriosis may suffer for many years before obtaining the correct diagnosis, as symptoms can be confused with pelvic inflammatory disease (PID), irritable bowel syndrome (IBS), fibromyalgia, and other illnesses. Diagnosis may be further complicated by the presence of multiple chronic conditions.
The endometrium is the lining of the uterus that builds up each month, breaks down, and sheds during the menstrual period. Endometriosis occurs when tissue similar to endometrial tissue exists outside of the uterus.
Endometrial tissue growing outside the uterus develops into growths (also called implants or lesions) which respond to the menstrual cycle. Like the lining of the uterus, endometrial growths are affected by the hormonal changes that bring about menstruation.
Research has now shown a link between genetics and endometriosis. When the genes which code for endometrial tissue are working differently, endometriosis becomes more sensitive to estrogen and also triggers the body to produce large quantities of prostaglandins, a group of lipids made by the body during tissue damage. These prostaglandins initiate inflammatory responses in the abdominal cavity. This results in inflammation that causes pain, scarring, adhesions, infertility, and other problems. Read more about the causes of endometriosis.
Endometriosis can occur anywhere in the pelvic cavity. Endometriosis most commonly involves a woman’s ovaries, fallopian tubes, the ligaments that support the uterus, the spaces around the reproductive organs, and the tissue lining the pelvic cavity. Endometrial tissue may also spread to organs such as the bladder or bowel.
Throughout history, the symptoms of severe, chronic pelvic pain in women were often attributed to mental illness, demonic possession, or promiscuity. Hysteria, which means “of the womb” in Latin, was a common diagnosis for many women who complained of pelvic pain. Pregnancy was considered a cure for dysmenorrhea (painful periods), and women with this complaint were typically encouraged to marry and get pregnant as soon as possible. In cases where ancient doctors did recognize endometriosis symptoms, such as pelvic adhesions (fibrous scarring that connects organs or tissues, causing pain), they prescribed preparations containing the urine of men or bulls, tar water, castor oil, or the secretions of the blister beetle. These treatments could either be swallowed or inserted vaginally. Leeches were also a popular treatment for gynecological conditions.
In the 1920s, Canadian gynecologist Thomas Cullen first identified and described how endometrial implants are associated with disease activity. In the 1940s, new techniques in endoscopy allowed doctors to better examine and visualize what was happening inside the body in cases of endometriosis. The first birth control pill became available in 1960, and the age of hormonal treatment for endometriosis began. Treatment for endometriosis further improved in the 1970s, when laparoscopic surgical techniques gained acceptance. Laparoscopic removal of implants and adhesions lowered the risk for surgery-related complications and made for much faster healing.
Modern research into endometriosis is focusing on new and better treatments and possible ways to prevent the condition from developing.
Approximately 176 million women worldwide are impacted by endometriosis, and an estimated 1 out of 10 women of childbearing age suffer from the disease in the United States. It is impossible to know how many women remain undiagnosed. Endometriosis mostly affects women in their reproductive years, especially between the ages of 25 and 40, but can develop in girls as young as 11.
One study estimates that 75 percent of women who experience pelvic pain and 50 percent of women with fertility issues have endometriosis.
Symptoms from endometriosis generally disappear after women go through menopause. Pelvic pain which persists after menopause warrants further evaluation to determine its causes.
There are four stages of endometriosis: minimal, mild, moderate, and severe. Stage is determined by the location, amount, depth, and size of the endometrial implants.
The stage of endometriosis is not necessarily related to the level of pain experienced. In other words, someone with stage 1 endometriosis may experience significantly more pain than someone with stage 4 disease. Read more about the stages of endometriosis.
Many women with endometriosis do get pregnant. However, women with endometriosis may find it harder to conceive. In fact, researchers think as many as half of women with infertility are affected by endometriosis.
Some possible reasons for this infertility include:
Additionally, some treatments for endometriosis may delay or prevent pregnancy. Read more about endometriosis treatment options.
Endometriosis and endometrial cancer are separate conditions. Though their names sound similar, endometriosis is a benign condition while endometrial cancer is a malignant process. Very limited data has shown that there may be a link between endometriosis and developing endometrial cancer later, but more studies are needed to draw any conclusion at this time. Like most cancers, the development of endometrial cancer depends on many factors. Having endometriosis does not necessarily mean you are at a higher risk of getting cancer than someone who does not have endometriosis.
Typically, a gynecologist or other health care provider will review your medical history and complete a physical examination and pelvic exam. A diagnosis of endometriosis can only be confirmed after the doctor performs a laparoscopy and biopsies suspected tissue. Other examinations that may be used to help diagnose endometriosis include ultrasound, a computed tomography (CT) scan, and a magnetic resonance imaging (MRI) scan. But laparoscopy is considered the gold standard for diagnosis of endometriosis. Read more about endometriosis diagnosis.
Symptoms of endometriosis may include excessive menstrual cramps, back pain, abnormal menstrual flow, pain during intercourse, chronic fatigue, infertility, and painful bowel movements or urination. It can also include bloating and gastrointestinal issues, like nausea, diarrhea, or constipation. Learn more about endometriosis symptoms.
Depending on the severity of the symptoms, treatment for endometriosis may include pain medications (over-the-counter or prescription), hormonal therapy (oral contraceptives or injections), or surgery (laparoscopy, laparotomy, or hysterectomy). Read more about endometriosis treatments.
While symptoms can be similar, the underlying root cause of these conditions is different. Endometriosis develops outside of the uterus. Adenomyosis is limited to the inside of the uterus. A notable difference is that adenomyosis symptoms most often start late in the childbearing years, after having children. Read more about the differences between endometriosis and adenomyosis.