What is endometriosis?

The tissue that lines the uterus is called the endometrium. Normally, if a woman doesn't get pregnant, this tissue is shed each month during her period. In endometriosis, tissue that looks and acts like endometrial tissue implants outside the uterus. Each month, this misplaced tissue responds to the hormonal changes of the menstrual cycle. It builds up, breaks down, and bleeds. But the blood has nowhere to go. This causes surrounding tissue to become inflamed or swollen. It can also cause scar tissue, chronic pain, and heavy periods.

Endometriosis is a main cause of infertility in women. This can happen if the tissue implants in the ovaries or fallopian tubes. Tissue can also implant on other organs in the pelvis. Endometriosis affects about 10 percent of women.

What causes endometriosis?

Although the exact reason endometrial tissue is able to grow outside of the womb is unknown, there are theories:

  • Retrograde menstruation, when menstrual debris goes backward out of the fallopian tubes during a period.
  • Most women have some degree of retrograde menstruation though their immune system is able to clear the debris and prevent the development of endometriosis. The immune system typically prevents tissue from growing where it doesn't belong.
  • Hormonal changes during ovulation and menstruation.
  • In severe cases, masses, lesions and scar tissue may form in the endometrium.

Having a first-degree relative with endometriosis may increase a woman's chance of developing the condition.

What are the risk factors for endometriosis?

Although any woman may develop endometriosis, the following women seem to be at an increased risk for the disease:

  • Women who have a mother, sister, or daughter with the disease
  • Women who gave birth for the first time after age 30
  • White women
  • Women with an abnormal uterus

What are the symptoms of endometriosis?

Symptoms of endometriosis may occur at any time during the menstrual cycle. Some women experience mild endometriosis with little or no pain.

Pelvic pain that extends down to the legs during the menstrual cycle is common, but some women experience a throbbing, gnawing and dragging pain and describe a feeling that their insides are being pulled down. This pain can range from mild to disabling.

Other symptoms include:

  • Pain during sexual intercourse
  • Urinary urgency and pain while voiding
  • Lower back or abdominal pain
  • Chronic tiredness
  • Constipation
  • Shooting rectal pain and pain during a bowel movement
  • Pain during ovulation
  • Inflammation of the pelvic cavity
  • Pain while standing or walking
  • Pain from adhesions (scar tissue) that bind the fallopian tubes, ovaries, uterus, bowels and bladder
The amount of pain a woman has isn't always related to the severity of the disease. Some women with severe disease may have no pain. Other women with a milder form of the disease may have severe pain or other symptoms

How is endometriosis diagnosed?

Your doctor may feel endometrial growths during a pelvic exam and order imaging tests to identify endometrial cysts or larger areas of endometriosis. Your doctor may initially ask for an ultrasound or a magnetic resonance imaging exam to get a view of the inside your uterus.

The most definitive test to determine the existence and severity of endometriosis is laparoscopy, a minimally invasive surgical procedure in which a scope with a small camera is inserted through a small incision near the belly button. A biopsy may be taken at this time to rule out other illnesses.

Other tests may include:

  • Biopsy. For this test, a small tissue sample is removed from the body and examined.
  • Ultrasound. This imaging test uses high-frequency sound waves to create an image of the organs.
  • Computed tomography (CT scan). This is an imaging test that uses X-rays and a computer to make detailed images of the body. A CT scan shows details of the bones, muscles, fat, and organs. It can find problems that may not show up on an ordinary X-ray.
  • Magnetic resonance imaging (MRI). This imaging test provides a two-dimensional view of organs or tissue.

How is endometriosis treated?

The doctors at the Cedars-Sinai Minimally Invasive Gynecologic Surgery Center treat endometriosis with an emphasis on preserving fertility.

A big challenge for women with endometriosis is getting pregnant. For some, surgery can improve the chance of natural conception. For others, infertility therapies, such as ovulation induction or in vitro fertilization, may be more effective.

Hormonal preparations are available to treat endometriosis, although there may be some adverse effects with long-term hormone use. Typically, symptoms return when the hormone therapy is stopped. Hormone therapy is not recommended for women who want to become pregnant.

Surgery to remove the endometrial tissue remains an option, although the tissue may regrow in a few years. Using minimally invasive surgical techniques, fertility may be preserved. Surgical options include:

  • A conservative approach that removes lesions and adhesions but retains reproductive organs.
  • A semi-conservative approach which allows ovarian function to continue, avoiding the symptoms of menopause.

For women who do not want to become pregnant, a total hysterectomy—including removal of the ovaries, typically through minimally invasive surgery techniques—may be the only option to bring total relief. The cessation of hormone activity will cause menopause-like symptoms, including hot flashes.

Conservative therapies such as anti-inflammatory drugs, yoga, acupuncture and relaxation techniques might provide some benefit.

Cedars-Sinai physicians are working on a number of research studies to improve standard therapies and discover new ones, including a cure.

The stage of endometriosis often guides the treatment:

  • Stage I — Minimal evidence of endometriosis with only superficial lesions
  • Stage II — Mild evidence as above, with some deep lesions
  • Stage III — Moderate evidence as above, plus a presence of endometriomas (a pelvic mass) and adhesions in the ovary
  • Stage IV — Severe evidence with all of the above and large endometriomas and adhesions

Living with endometriosis

Simple steps that can help ease the pain of endometriosis include:

  • Rest, relaxation, and meditation
  • Warm baths
  • Prevent constipation
  • Regular exercise
  • Use of hot water bottle or heating pad on your belly

Key points

  • Endometriosis is common in women during the years they can have children.
  • It causes tissue that looks and acts like endometrial tissue to implant outside the uterus.
  • Treatment may include medicine, surgery or both.
  • It can make it very hard or impossible for a woman to get pregnant.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

  • Know the reason for your visit and what you want to happen.
  • Before your visit, write down questions you want answered.
  • Bring someone with you to help you ask questions and remember what your provider tells you.
  • At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.
  • Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.
  • Ask if your condition can be treated in other ways.
  • Know why a test or procedure is recommended and what the results could mean.
  • Know what to expect if you do not take the medicine or have the test or procedure.
  • If you have a follow-up appointment, write down the date, time, and purpose for that visit.
  • Know how you can contact your provider if you have questions.