The question “What is endometriosis?” is searched online millions of times each year. The condition affects an estimated 190 million women worldwide, yet many have not heard of it.
Photography: Lexi Coon
Richard Burney, M.D., director of UAB Medicine’s Division of Reproductive Endocrinology and Infertility, shares information on endometriosis, including the causes, symptoms, and treatment options.
What is endometriosis?
The uterus, or womb, is an organ in the pelvis of women where babies are conceived and grow before birth. The tissue that lines the uterus is called the endometrium, and when tissue like this grows in other parts of the body, it’s known as endometriosis. It can develop in many parts of the body, but the most common locations include the lining of the pelvis, ovaries, intestines, and bladder. It also can appear in abdominal incisions from prior surgery, the lungs, and – in rare cases – the brain.
During normal menstrual cycles, the endometrium gets thicker 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 that in many women, some of this lining is shed into the pelvis during their period. This is called retrograde menstruation.
Most of this blood and tissue that is shed is cleared by the immune system. But in some women, the tissue implants on surfaces and organs in the pelvis and becomes endometriosis. These endometriosis tissue growths, known as lesions, get worse in response to menstrual cycle hormones and cause pain and scarring in the pelvis.
Who is affected?
Endometriosis is a common condition that affects one in 10 women of reproductive age and as many as one in three women with otherwise unexplained infertility. Endometriosis symptoms start in adolescence for many women, and during the reproductive-age years, symptoms can include extreme pain and/or infertility. The most common form of the disease occurs in the ovaries and is known as endometrioma, and it can make it difficult to get pregnant. Endometriosis is much less common among menopausal women, possibly due to lower estrogen levels in the body.
What are the symptoms?
Endometriosis is a leading cause of chronic pelvic pain, especially before and during menstruation, during intercourse, or during bowel movements. Many women with endometriosis also have lower back pain and headaches at certain times during the menstrual cycle. It is also associated with vaginal spotting for two or more days before the onset of the period, particularly in women who have infertility.
Many adolescents, teens, and young women suffer for years with painful periods. Women with regular menstrual cycles who can’t get pregnant after trying for at least 12 months (or six months for women with irregular menstrual cycles) should see a health care provider, as this could be a sign of endometriosis.
Are there different forms of endometriosis?
There are three types of endometriosis:
- Peritoneal endometriosis – when the lesions develop on the lining of the pelvis
- Ovarian endometriosis – when the lesions shed within an ovarian cyst
- Deep infiltrating endometriosis – when the lesions develop in deeper layers of tissue or organs
Endometriosis is also described in stages. When the condition is mild, and/or when the lesions occur in the lining of the pelvis only, it is usually called stage 1. More severe cases that affect the ovaries and/or deep tissues are normally classified as stage 4. This staging system does not necessarily relate to pain levels.
How is endometriosis diagnosed?
Diagnosing endometriosis is challenging, because there is no convenient test for it. In many cases, 10 years may pass between the first symptoms and a diagnosis. Laparoscopic surgery – which involves inserting surgical instruments with tiny cameras into the body through small cuts (incisions) – can provide a definite diagnosis and also allows any lesions to be treated.
Endometriosis is often diagnosed based on the patient’s medical history, a pelvic examination, and identifying where the pain occurs. An ultrasound of the pelvic area can help identify ovarian endometriosis, and magnetic resonance imaging (MRI) scans often can detect deep infiltrating endometriosis.
What are the treatment options?
How endometriosis is treated and managed varies depending on the patient’s preferences and how severe her condition is. It often requires input from doctors in multiple medical specialties. For patients who want to become pregnant, laparoscopic surgery and/or fertility treatment are common and proven approaches.
For women who are more interested in controlling the pain caused by endometriosis, a two-step approach is recommended. The first step is treating the disease by destroying the lesions, a process called ablation or excision, that is usually done during a surgical procedure. The second step is helping prevent the condition from coming back by reducing the amount of endometrium that enters the pelvis.
With ovarian endometriosis, fluid-filled cysts known as endometriomas are also referred to as “chocolate cysts”. Women with an endometrioma are urged to have regular examinations, and removing the cysts may be considered if the symptoms are significant.
Click here to learn more about care for endometriosis at UAB Medicine.