What is Endometriosis?

Endometriosis, also known as “endo,” is when the endometrium (the tissue that normally lines the uterus) grows outside of the uterus. It can cause abdominal pain, difficulties getting pregnant, and painful intercourse. 

During a typical menstrual period, most of the uterine lining and blood is shed through the cervix. But it can also enter the pelvis through the fallopian tubes and move to other areas of the body. The endometrial-like tissue may grow in response to the hormone estrogen, and bleed like the uterine lining does each month during your menstrual period.

Endometriosis can affect the:

• Ovaries

• Fallopian tubes

• Bowels

• Bladder

• Ureters

• Area behind the uterus

• Peritoneum (the tissue that coats most of the organs in the pelvis and abdomen)

When endometrium builds up in areas outside of the uterus, it can become swollen, inflamed, and irritated. The build-up irritates structures in the pelvis and abdomen, which can cause a type of sticky scarring called adhesion. These adhesions can cause the reproductive organs to stick to other organs in the pelvic area.

In some cases, endometrial cells may grow on or inside the ovaries and create a blood-filled cyst called an endometrioma. The tissue irritation, inflammation, and scarring can impact menstrual cycles, intercourse, and fertility. 

Stages

Endometriosis is sorted into four stages, depending on the number and severity of endometrial tissue growths, adhesions, and endometriomas (not symptoms):

1. Minimal

2. Mild 

3. Moderate 

4. Severe 

Quiz: Do I have endometriosis?

Symptoms

The symptoms caused by endometriosis can vary. Some people have no symptoms at all. For people who do have symptoms, the most common one is pain, which shows up in different ways: 

• Very painful menstrual cramps, called dysmenorrhea, that can occur before and during your period

• Chronic (long-term) pain in the lower back and pelvis

• Pain during or after sex, called dyspareunia, which can feel like a "deep" pain with penetration 

• Abdominal pain with nausea, vomiting, or diarrhea

• Painful bowel movements, called dyschezia 

• Pain when urinating, called dysuria 

Other symptoms of endometriosis include:

• Heavy menstrual bleeding

• Bleeding in between normal periods

• Difficulty getting pregnant

Symptoms do not always correlate with stage or how extensive the endometriosis is. Pain, for example, is not always an accurate measure of disease severity. Different people experience and report their symptoms differently — and this has an impact on how their experience is heard and validated. Race is likely to play a role, but more research is needed to establish the links with symptoms.

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Causes

Endometriosis is a common health problem that affects 6% to 10% of women worldwide — that is roughly 1 in 10 women. It can happen to anyone who gets menstrual periods.

Endometriosis affects 6% to 10% of women of reproductive age worldwide. 

Experts do not know why some people get endometriosis, although there are a few working theories. Research is ongoing. 

Studies show that longer exposure to estrogen can stimulate the growth and spread of endometrial tissue. In other words, experiencing more periods and exposure to greater quantities of estrogen is a risk factor for endometriosis. This can happen if: 

• You started having periods before age 11 to 12.

• You have long and heavy menstrual periods that last more than 7 days.

• You have short menstrual cycles (27 days or fewer).

There is also solid evidence that a family history of endometriosis is more common in those with the disease. The risk of developing endometriosis is three to nine times higher in those who have a first-degree relative with the disease. Studies are conflicting on whether alcohol and caffeine affect the risk of getting endometriosis.

Additional factors that have been linked to developing endometriosis include a diet high in red meat and exposure to environmental toxins (such as phthalates, bisphenol A, or organochlorinated pollutants). 

Other studies suggest factors that may decrease the risk of endometriosis, like regular exercise and a higher body mass index (BMI).

Medications

Although surgery is needed to make a definitive diagnosis, your healthcare provider might prescribe medication if they suspect endometriosis. The thought is if your pain gets better after starting medication, then you most likely have a clinical diagnosis of endometriosis (a diagnosis that is not based on surgery or biopsy). 

Women in the U.S. miss an average of 6.3 hours of work each week due to endometriosis. 

Hormonal medications can lessen menstrual cramping and heavy bleeding during your period. They also help slow the growth of endometrial tissue, which can reduce pain from endometriosis. Hormone therapy has been shown to reduce pelvic pain and pain with sex in more than 80% of women with endometriosis. 

Examples of commonly prescribed hormonal medications include: 

• Birth control pills: These can be in the form of combined estrogen and progestin pills or progestin-only pills. 

• Injection: Progestin can also be taken in the form of an injection called Depo-Provera, or DMPA. 

• Hormonal intrauterine devices (IUDs): Available options include Mirena, Kyleena, Liletta, and Skyla. 

• Gonadotropin-releasing hormone (GnRH) agonists: These medications cause estrogen levels to fall, preventing you from having periods. A popular example is Lupron.

• Elagolix: This medication is a GnRH antagonist that blocks the release of estrogen by working at the level of the brain. 

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Surgery

Surgery may be necessary when treatment with hormonal medicines is not successful or when it can’t be used because of certain medical conditions. It may involve the removal of adhesions, endometriotic nodules, and ovarian cysts. Up to 80% of women who undergo laparoscopic surgery for endometriosis say it improves their pain. Unfortunately, for 40% to 80% of these women, pain returns within 2 years of surgery, and they may need additional treatment. 

Between 30% and 50% of women with endometriosis have difficulty getting pregnant on their own. 

Laparoscopy is an option for women who are having trouble becoming pregnant, or who are not trying yet but still want the ability to have children in the future. A large study found that women who underwent surgical removal of their endometrioma(s) had higher rates of getting pregnant. 

Hysterectomy (removal of the uterus) with removal of the ovaries can also be an effective approach to definitively treat endometriosis. Because getting pregnant after hysterectomy is not possible, this option is reserved for women who have chosen to not have children in the future, or who have chosen to not become pregnant biologically. This surgery provides final relief from endometriosis-related pain in more than 90% of women who get it.

Opting into surgery is not a decision to be made lightly, and you may feel overwhelmed or scared. That’s normal. Be sure to discuss your options with your provider, who can help you understand your surgical options and decide how to proceed.