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What Is Endometriosis?

Endometriosis is a common health problem in women that can cause pain and cramping and make it more difficult to get pregnant. Endometriosis occurs when cells that should be in the lining of the uterus begin to grow outside of the uterus. These growths are called endometrial implants. They can break down and bleed, resulting in scar tissue. Endometrial implants typically stay in the pelvic area. In rare cases, they may also appear elsewhere in the body.

Endometriosis can be a challenging condition to manage, but effective treatment is available. At University of Utah Health, our Women's Health providers offer expert care for women with endometriosis. We will create a personalized treatment plan that may include non-surgical and surgical strategies.

If endometriosis is interfering with your ability to get pregnant, you can find help and support at the Utah Center for Reproductive Medicine, where our fertility specialists offer the most advanced technologies to diagnose and treat infertility. 

Endometriosis Risk Factors

In the United States, about one in 20 women (13.6 million) have endometriosis. Women are at higher risk of developing this condition if they:

  • have a family history of endometriosis (especially if a mother, sister or aunt has the disease);
  • gave birth for the first time after age 30 or have never given birth;
  • started their period at a young age;
  • have short menstrual cycles (periods less than 27 days apart);
  • have heavy menstrual cycles that last longer than a week; or
  • have a health problem that blocks the flow of menstrual blood.

Signs and Symptoms of Endometriosis

Endometriosis can begin as early as a girl’s first period. But symptoms typically develop later, in a woman’s 30s or 40s. The condition can cause many different types of pain, including:

  • very painful menstrual cramps;
  • chronic, cyclic pain in the pelvis and lower back;
  • pain during or after sexual intercourse; and
  • pain while having a bowel movement or while urinating (especially during your period).

Pain happens because the endometrial cells growing outside the uterus thicken, break down, and bleed with each menstrual cycle. The endometrial tissue can’t easily get out of the body, and this leads to painful symptoms—especially during your period.

The endometrial cells may continue to expand and cause other problems, such as cysts in your ovaries (endometriomas) and scar tissue.

Other symptoms of endometriosis can include:

  • heavy uterine bleeding during your periods or between periods;
  • difficulty becoming pregnant; and
  • digestive symptoms, such as diarrhea, constipation, bloating, and nausea.

Endometriosis is sometimes mistaken for other conditions that cause pelvic pain, such as:

Endometriosis Stages

After all of the test results are available, the provider can “stage” the endometriosis into one of four stages:

  • stage I—minimal,
  • stage II—mild,
  • stage III—moderate, and
  • stage IV—severe.

Staging is based on factors such as the size and location of the endometrial implants and how widespread they are, as well as how much scar tissue is present. Most of the time, the stage doesn’t affect your symptoms—a woman with Stage I endometriosis could have severe symptoms, and a woman with Stage IV could have mild symptoms. Endometriosis does not always progress from one stage to another, and it can get worse or better with treatment.

Endometriosis Diagnosis

If you think you may have endometriosis, discuss your concerns with your provider. He or she will talk to you about your symptoms and perform a pelvic exam. During a pelvic exam, we may be able to tell whether you have large cysts or scars on or around your reproductive organs.

Imaging tests, such as ultrasound and magnetic resonance imaging, can help your provider learn more about what is happening inside your body. These tests can also provide detailed information about the size and location of endometrial implants, which can help with surgical planning, if needed.

A minimally invasive surgery called a laparoscopy can also confirm a diagnosis of endometriosis. Laparoscopy involves inserting a thin, flexible tube into the abdomen through small incisions near the navel. A tiny camera at the end of the tube helps the surgeon see the size and location of endometrial tissue outside the uterus. During this outpatient operation, the surgeon may take a tissue sample for testing. The surgeon may be able to remove the endometrial implants during laparoscopic surgery as well.

Endometriosis Treatment Options

Your provider will create a personalized treatment plan based on your symptoms and whether you want to get pregnant. Treatment can include medicine, surgery, or a combination of both.

Endometriosis Medication

Medication for endometriosis can include:

  • pain medication, such as non-steroidal, anti-inflammatory drugs;
  • hormone therapy; and
  • aromatase inhibitors, which reduce the amount of estrogen your body produces and are used alongside hormone therapy to relieve symptoms.

Hormone therapy options include:

  • Hormonal birth control — This medication is available in the form of pills, injections, implants, and intrauterine devices. These drugs can relieve symptoms of endometriosis (especially pain symptoms). They prevent menstruation until after the person stops taking them. Hormonal birth control can be a good option for women who do not want children (or more children).
  • Gonadotropin-releasing hormone (GnRH) agonists and antagonists — This type of hormone therapy can control the growth of endometriosis and is available in pill, injection, and nasal spray form. These drugs prevent the body from producing estrogen, a hormone that makes symptoms of endometriosis worse. The medication also helps control the growth of endometriosis. Women who take GnRH agonists and antagonists do so for a few months and then stop. Menstruation typically returns within six to 10 weeks of taking the last injection or spray. Taking GnRH agonists may improve a woman’s chances of getting pregnant.

Endometriosis Surgery

If medication doesn’t help, we may recommend surgery to remove the implants. This is usually done laparoscopically. Implant removal will relieve your symptoms; however, your endometriosis and pain may return and worsen over time.

Surgery to remove the uterus (hysterectomy) and/or ovaries can help, too, but the relief may not be long-lasting. These surgeries are major and carry short- and long-term risks, so we typically do not recommend them unless all other treatment options are unsuccessful.

Endometriosis and Fertility

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Many women with endometriosis can get pregnant. However, about 30 to 50 percent of women with endometriosis experience infertility. Researchers aren’t sure why this is the case, but some possible reasons include:

  • Endometrial implants block off or change the shape of the pelvic area and reproductive organs. This may prevent the sperm from finding the egg.
  • The immune system attacks the developing embryo early in pregnancy.
  • The lining of the uterus does not develop properly and can’t support the embryo.

Women with stage III or IV endometriosis are more likely to have trouble getting pregnant than those with stages I or II.

If you have endometriosis and are having difficulty getting pregnant, surgery to remove the endometrial implants may help. If not, your provider may refer you to a fertility specialist. Fertility treatments may include stimulating your ovaries to make more eggs, providing in vitro fertilization, and other methods.

Prognosis for Women with Endometriosis

Endometriosis is a chronic condition, and there isn’t a cure yet. But treatment can help manage pain and fertility issues so that you can experience a good quality of life. Symptoms usually improve significantly after menopause (when your period stops).

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