How Serious Is Endometriosis?

Endometriosis can cause abdominal pain, infertility and ovarian cysts. Complications of endometriosis may require surgery.

Endometriosis is a common condition in which tissue similar to the lining of the uterus grows outside the womb and can cause pelvic pain and difficulty getting pregnant.

The inner lining of the uterus is called the endometrium. In endometriosis, cells like those found inside the endometrium grow outside the womb. Endometriosis most commonly occurs in the ovaries, fallopian tubes, the bowel, and the areas in front, in back, and to the sides of the uterus.

Some women with endometriosis have no symptoms. When symptoms occur they may be serious and can include: 

• Pain in the pelvic area 
  • Often just before or during menstrual periods
  • Periods may get worse over time
  • May occur between menstrual periods and worsen during a period
  • During or after sex
  • With bowel movements or while urinating, especially during a period
  • Can be severe in some cases
• Difficulty getting pregnant 
• Ovarian cysts called endometriomas (cysts containing endometriosis tissue)
  • Endometriomas are usually filled with old blood resembling chocolate syrup and are sometimes referred to as "chocolate cysts" 
  • They are benign (not cancerous) but may also cause pelvic pain

Endometriosis symptoms usually resolve when a woman goes through menopause.

The cause of endometriosis is unknown but there are several theories as to why the condition may occur:

• Metaplasia is when one type of tissue changes to another normal type of tissue. One theory is that endometrial tissue may have the ability to replace other types of tissues outside the uterus.
• Retrograde menstruation is an older theory that supposes menstrual tissue flows backwards through the fallopian tubes (called “retrograde flow”) and deposits on the pelvic organs where it grows, however, researchers have found 90% of women have retrograde flow and do not have endometriosis, so it is believed something else (such as immune system or hormonal dysfunction) triggers endometriosis.
• A genetic predisposition may exist. First-degree relatives of women who have endometriosis are more likely to develop the disease.
• Lymphatic or vascular distribution of endometrial cells in which endometrial fragments travel through blood vessels or the lymphatic system to other parts of the body may explain how endometriosis cells end up in distant sites, such as the lung, brain, skin, or eye.
• Immune system dysfunction may play a role. 
• Environmental factors may contribute to the development of endometriosis, such as the effects of toxins in the environment on reproductive hormones and immune system function. This theory is controversial.

There is no simple test to diagnose endometriosis, and it is difficult to diagnose. In addition, many women are brought up to believe their symptoms are normal, and often birth control hormones or pregnancy can temporarily relieve symptoms even without a diagnosis.  

The only way to definitively diagnose endometriosis is with a laparoscopic procedure and a biopsy of the tissue. This is an invasive procedure. It may also be used to remove endometriosis at the same time. 

Endometriomas (ovarian cysts containing endometriosis tissue) may be seen with ultrasound. 

Women need to find a doctor experienced in treating endometriosis, because a common problem among patients with endometriosis is having a healthcare provider take the pain seriously.

Medications used to treat endometriosis include:

• Nonsteroidal anti-inflammatory drugs (NSAIDs) for pain
  • Ibuprofen (Advil, Motrin) 
  • Naproxen (Aleve, Naprosyn) 
• Hormonal birth control, including 
  • Oral pills, patches, and vaginal rings can reduce or prevent menstrual bleeding 
  • Progestin-containing intrauterine device (IUD) can help treat pain
• Gonadotropin-releasing hormone (GnRH) analogs and GnRH antagonists 
  • Nafarelin (Synarel) 
  • Leuprolide (Lupron) 
  • Goserelin (Zoladex) 
  • Elagolix (Orilissa) 
• Aromatase inhibitors 
  • Letrozole (Femara)
  • Anastrozole (Arimidex)

Surgery for endometriosis is done both to diagnose endometriosis and also to remove it. It may be performed before medications are tried since it’s used diagnostically. It may also be considered if medications do not work to relieve pain. 

• Endometriosis surgery is often done laparoscopically, which is less invasive than open surgery. The goal of surgery is to remove endometriosis and scar tissue, but it is not a permanent cure and endometriosis tissue often grows back and pain returns without post-surgical treatment such as hormonal birth control.
• Surgery for endometrioma (ovarian cysts containing endometriosis tissue) is usually only done if the cyst is larger than 4 to 5 cm, symptomatic, or is growing.
• Removal of the uterus (hysterectomy), ovaries (oophorectomy), or ovaries and fallopian tubes (salpingo-oophorectomy) is the only permanent treatment and may be recommended for patients who:
  • Have tried other treatments and still have severe symptoms
  • Do not wish to become pregnant in the future
  • Want a permanent treatment 

Endometriosis can also cause infertility. Treatments for infertility related to endometriosis include:

• Medications to cause ovulation
  • Clomiphene (Clomid)
  • Letrozole (Femara)
  • Anastrozole (Arimidex)
• Fertility medicines plus intrauterine insemination (IUI)
• In vitro fertilization (IVF)
• Surgery to remove endometriosis tissue

Endometriosis can cause serious complications. Complications of endometriosis include:

• Chronic abdominal pain
• Infertility
• Ovarian cysts
• Need for surgeries