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Many people who have periods deal with heavy flow and painful cramps from time to time. But for people with endometriosis, these symptoms are all too common. The gynecology team at Banner Health are experts in endometriosis. Learn more about this common gynecologic condition and when to see your health care provider.

What is endometriosis?

Endometriosis is a painful medical condition that affects approximately 1 in 10 women of reproductive age. It occurs when tissue similar to the lining of the uterus grows in other areas of your body outside of the uterus, often within the pelvic region, including the fallopian tubes or ovaries. 

Endometriosis can also grow into adjacent areas of the body, such as the bladder and bowel.  Rarely, endometriosis has been found in areas outside of the pelvis, such as the chest, abdominal wall and even the lungs.

During your period or menstrual cycle, the endometrial tissue growing outside of the uterus reacts to hormonal changes, just like the lining inside the uterus. It grows and sheds outside of the uterus, causing inflammation, fibrosis (scarring) and pelvic pain.

Endometriosis symptoms can range from mild to debilitating. Patients with endometriosis often experience pain during their periods, intercourse, urination and bowel movements, as well as noncyclic pain (pain that happens outside of your period). Other patients may not have any painful symptoms, but endometriosis may be discovered if they have problems getting pregnant.   

There are three types of endometriosis: 

  1. Peritoneal or superficial disease: Lesions may range from microscopic to less than 5 mm in depth
  2. Ovarian endometriosis or endometriosis: Involving one or both ovaries
  3. Deep or infiltrating endometriosis: Lesions are larger than 5 mm and have spread into adjacent areas like the fallopian tubes, bowel and bladder

What causes endometriosis?

Any person with a uterus of reproductive age — from the start of your period through menopause — can have endometriosis. However, no one knows what causes endometriosis. Experts currently have a few theories on the causes and potential risk factors.

Potential causes include:

  • Backward (retrograde) menstruation: During a normal period, a person’s body sheds the uterus lining out of the vagina each month. This lining is made up of blood and uterine tissue. In retrograde menstruation, the opposite process happens. The blood and tissue flow up through your vagina into your fallopian tubes. Cells from the blood and tissue stick to the pelvic organs, where they grow, continue to thicken and bleed during your period.
  • Induction theory: Some experts believe hormonal or immune factors cause the cells that line the inside of the abdominal cavity (called peritoneal cells) to transform into endometrial-like cells. 
  • Transformation of embryonic cells: Embryonic cells (cells in the earliest stage of development that can make any other cell in the body) can transform into endometrial-like cell implants due to the influence of hormones like estrogen during puberty. 
  • Metaplasia of the peritoneum: When normal cells in the peritoneum (lining of the abdomen) transform and behave like endometrial-like cells. 
  • Endometrial cell transport: Endometrial cells can be transported to other parts of the body through blood or lymphatic fluid.

Potential risk factors include:

  • Family history: You are at a higher risk of developing endometriosis if you have a family member who has or had it.
  • Immune system disorders: In some cases, your immune system cannot fight off or control the growth of endometrial tissue outside of the uterus.
  • Surgery: After hysterectomy or C-section, endometrial cells may stick to a surgical incision. 

Endometriosis is a complex condition and likely involves a combination of genetic, hormonal and immune system factors. 

What are the symptoms of endometriosis?

Endometriosis symptoms can vary from person to person, but pelvic pain is one of the most common signs. While menstrual cramps (dysmenorrhea) are common, pain related to endometriosis can be much more severe and may worsen as the condition continues. 

Other symptoms of endometriosis may include:

  • Fatigue
  • Pain between periods
  • Bleeding between periods
  • Long and heavy periods (heavy menstrual bleeding)
  • Painful urination and/or bowel movements
  • Digestive issues such as constipation, diarrhea or nausea
  • Problems with getting pregnant (infertility)

Chronic pain can also lead to depression and anxiety. Some people have such severe pain that it affects their quality of life and ability to function at work or perform everyday tasks. 

How is endometriosis diagnosed?

Unfortunately, endometriosis can be challenging to diagnose. In the United States, it takes an average of 10 years from the time symptoms start to receive an accurate endometriosis diagnosis. The challenge is that endometriosis often has vague symptoms that overlap with other conditions, like adenomyosis, uterine fibroids, irritable bowel syndrome (IBS) or pelvic inflammatory disease (PID). 

Diagnosing endometriosis starts with visiting your health care provider. They may ask about your symptoms, their severity and how they affect your daily life. They may also ask questions about your menstrual cycle, pain patterns and if you have a family history of endometriosis.

Your health care provider may then perform a pelvic exam to check for any abnormalities or signs of endometriosis. In some cases, they may order imaging tests (such as a transvaginal ultrasound or MRI) to look for signs of endometriosis, such as ovarian cysts or abnormal tissue growth. 

It used to be that surgery was necessary to confirm an endometriosis diagnosis. New guidelines now recommend these imaging tests to look specifically for signs of ovarian and deep endometriosis.  Accurate imaging provides the patient and their provider with helpful information to guide treatment options.   

Surgery is not always needed just because endometriosis is suspected or found on imaging. But when ovarian and/or deep endometriosis is found, surgery may be needed to remove the endometrial tissue. Pre-operative imaging also provides an accurate, full map of the disease for the surgery team, rather than just showing the ‘tip of the iceberg’ that can be seen during laparoscopic surgery.

If it is determined you should also have a laparoscopy, your surgeon will see if there are any endometrial lesions, scarring or cysts.  Your surgeon may also take a tissue sample (endometrial biopsy) of a suspected lesion for testing and remove the growth to ease your symptoms or improve your fertility.

How do you treat endometriosis?

Endometriosis is a chronic inflammatory condition. Although pain symptoms may be managed with medications and lesions can be removed surgically, continued hormonal management may be needed to suppress the ovaries that continue to stimulate endometrial tissue. Finding the right treatment for you depends on many factors, including age, symptoms and desire to have children. Your health care provider will discuss this with you, so you can determine your best treatment option.   

Nonsurgical endometriosis treatments

The primary non-surgical treatments for endometriosis are hormone therapy and pain management.

Hormone treatments: Treatments that include hormone therapy can change hormone levels or stop your body from producing certain hormones. They can also affect your ability to get pregnant, so hormone therapy may not suit everyone. 

Hormone treatments can be taken as pills, shots, patches, implants and IUDs. The most common options include:

  • Birth control pills with estrogen and progesterone (combined oral contraceptives) or progesterone-only
  • Progestins to stop periods
  • Gonadotropin-releasing hormone (Gn-RH) antagonist to limit ovarian hormones
  • Gonadotropin-releasing hormone (Gn-RH) agonist to stop ovarian hormones

Pain medication: Several over-the-counter NSAIDs (nonsteroidal anti-inflammatory drugs) like ibuprofen may help with endometrial pain.

Other treatment options that may help include:

  • A healthy diet that includes omega-3 fatty acids, whole grains, fresh fruits and vegetables and iron rich foods 
  • Regular exercise, which should include about 150 minutes of moderate intensity activity and two muscle strengthening workouts per week, as recommended by the Centers for Disease Control and Prevention (CDC)
  • Stress reduction techniques, including acupuncture 
  • Adequate sleep

Surgical options

If nonsurgical treatments aren’t enough to help, your provider may recommend a surgical option, most often laparoscopy. During this minimally-invasive surgery, your surgeon makes a small cut in your abdomen to remove endometriosis lesions or scar tissue.

In rare cases where the disease is so severe that laparoscopy may not be possible, your provider may recommend a laparotomy. This operation requires a larger open cut.

Removing endometrial tissues with these methods can provide short-term pain relief, but symptoms may come back. When your periods are this painful and debilitating, your provider may recommend a hysterectomy, a surgical procedure to remove the uterus, cervix, fallopian tubes and sometimes the ovaries. A hysterectomy should only be considered if you no longer wish to have children.

Can I still get pregnant if I have endometriosis?

Endometriosis is one of the most common conditions linked to women with infertility. The impact of endometriosis on fertility varies from person to person and depends on factors such as the severity of the condition, the extent of the disease and other individual factors. However, many with endometriosis-related infertility can still get pregnant and carry a successful pregnancy. 

For women with endometriosis who are struggling with infertility, assisted reproductive techniques (ART) such as in vitro fertilization (IVF) or intrauterine insemination (IUI) have proven to be the most successful ways of conceiving.

Talk to your health care provider or a reproductive endocrinologist about your fertility goals when discussing your endometriosis treatment plan. They can evaluate your specific situation, perform fertility tests and recommend appropriate treatments or interventions to enhance your chances of getting pregnant.

What is the long-term outlook for people with endometriosis?

Left untreated endometriosis can lead to a host of health issues and complications including:

  • Increased pain and discomfort
  • Progression of the disease (more extensive scarring and inflammation)
  • Fertility issues
  • Negative impact on mental health
  • Increased risk of complications such as ovarian cysts (endometriomas), bowel or bladder problems, adhesions causing organ dysfunction or obstruction and – rarely – increased risk of certain cancers 

Many people find relief from endometriosis symptoms and pain with treatment. Contact your health care provider to discuss your symptoms and a possible plan for treatment. 

How we care for endometriosis at Banner Health

If you have concerns about endometriosis, you can count on Banner Health. We provide comprehensive gynecologic services, including family planning, fertility issues, pregnancy, parenting, breastfeeding support, and assistance with perimenopause and menopause.