What Is Endometriosis?

Endometriosis is a painful and chronic disease that affects millions of women and occurs when the tissues that line the uterus - the endometrium - grow outside of the uterus.

Typically, endometriosis is found in the pelvic area: outside the uterus on the ovaries, fallopian tubes, and ligaments that support the uterus; outside of the uterus, bowel, rectum, bladder, and the lining of the pelvis. However, endometrium cells can be found in other parts of the body as well. More uncommon areas for endometrial growth include lung, arm, and thigh tissue.

In endometriosis, the displaced endometrial tissues develop into lesions or growths that respond to the menstrual cycle in the same way as the uterus does. Every month, the endometrial tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out the vagina.

The endometrial tissues grown on other areas of the body do not have an exit point, which leads to internal bleeding, inflammation, and breakdown of blood and tissue in the lesions.

This may cause intense pain, scar tissue formation, adhesions, infertility, and bowel problems.

Causes of Endometriosis:

There is no known specific cause for endometriosis. However, there are a number of suggested theories about the causes of endometriosis.

Hereditary Link - Women who have mothers or sisters with endometriosis are six times more likely to develop the disease. When there is a hereditary link, endometriosis tends to be worse in the next generation.

Retrograde menstruation - During menstruation, some menstrual tissue backs up through the fallopian tubes and proliferates wildly. Certain experts believe that all women experience a degree of retrograde menstruation, yet an immunological or hormonal condition allows for the endometrial tissue to grow and proliferate outside of the uterus.

Metaplasia - Metaplasia is the ability for tissues to change from one type of normal tissue to another type of normal tissue. It's been suggested that endometrial tissue may have the ability to replace other types of tissues outside of the uterus.

Immune System Dysfunction - It's unknown whether this is a cause for endometriosis, but certain women with endometriosis tend to display certain immunologic defects and/or dysfunctions.

Vascular/Lymphatic Distribution - Another theory suggests that endometrial fragments may travel through the lymphatic system or blood vessels to other parts of the body, explaining why endometriosis ends up in distant parts of the body.

Symptoms of Endometriosis:

In women who do have symptoms, the most common symptom is pelvic pain. This pelvic pain generally correlates with menstrual cycles; however, this is not always the case.

For some women, the pain may not correlate with menstruation at all. The pain of endometriosis may be so intense and debilitating that it severely affects their lives.

Women with endometriosis may notice a decrease in symptoms during pregnancy. This is due to hormonal changes during pregnancy as well as the fact that menstruation stops, since it’s menstruation that causes endometriosis.

Endometrial pain can also occur:

  • During sex (dyspareunia)

  • During urination/bowel movements

  • During menstruation (dysmenorrhea)

  • During a physical exam

Other symptoms can include:

  • Diarrhea and painful bowel movements, especially during menstruation

  • Intestinal pain

  • Abdominal tenderness

  • Backache

  • Severe menstrual cramps

  • Excessive menstrual bleeding

  • Pain in the pelvic region with exercise

  • Infertility

What Are Adhesions?

Adhesions are bands of fibrous scar tissue that form inside the body. Adhesions can be found anywhere in the body, between almost all organs and tissues.

In endometriosis, adhesions form from the endometrial tissue implanting and bleeding into the surrounding area, which causes inflammation, and can lead to the formation of scar tissue as part of the healing process.

Adhesions can bind an ovary to the pelvic wall or to the uterus. These bands of tissue may also extend between the bladder and the bowel.

The pain of adhesions can be described as stabbing, sickening, intense, sharp, pulling, and nauseating.

Active endometriosis pain is often described as burning, dull, heavy, and pinching.

Diagnosis of Endometriosis:

Diagnosing endometriosis can be difficult. There is often a large diagnostic delay for endometriosis because the symptoms may not be easily diagnosed or recognized in primary care or by the woman. Some women may not receive a proper diagnosis for upwards of twelve years.

An experienced gynecologist should be able to recognize the symptoms of endometriosis by talking to the woman and taking a thorough medical history - including the symptoms she is experiencing.

Your doctor may do an extensive pelvic exam, palpitating your pelvic area for abnormalities.

An ultrasound is not a definitive way to diagnose endometriosis but can identify cysts (endometriomas) associated with endometriosis.

The only way to properly diagnose endometriosis is through laparoscopic surgery unless the disease is present in the vagina. However, the surgeon performing this invasive procedure must know what they are looking for.

A proper laparscopic evaluation and biopsy of the tissue is the gold standard of diagnostics and the only definitive way to diagnose the disease.

Treatment of Endometriosis:

There are several different options for treating endometriosis:

  • Over-the-counter pain relievers such as NSAIDS (non-steroidal anti-inflammatories) to reduce pain and inflammation.
  • Hormonal contraceptives, such as birth control, aim to stop ovulation for as long as possible while producing the least amount of side effects.
  • Surgery may remove endometrial growths, scar tissues, and adhesions without removing your reproductive organs. Surgery can be done laparoscopically or through open abdominal surgery for more extensive cases.
  • In severe cases, your doctor may recommend a total hysterectomy with removal of all adhesions.

Link Between Endometriosis and Infertility:

Endometriosis can cause infertility, but not all women with infertility issues have endometriosis. Endometriosis is found in about one-third of infertile women.

Studies have shown that women with mild to moderate endometriosis may take longer to conceive and are less likely to conceive than the overall population.

The more severe the endometriosis, the more difficulty a woman may have becoming pregnant.

However, having endometriosis does not mean a woman will never conceive, it just means that she may take longer to conceive. Many women who have been diagnosed with endometriosis bear children without any difficulty, and others will become pregnant eventually - with time and occasionally assisted by reproductive technologies.

Related Resource Pages on Band Back Together:

Chronic Illnesses

Chronic Pain

Dyspareunia

Infertility

Invisible Illnesses

IUI

IVF

Additional Resources for Endometriosis:

Endometriosis Foundation of America - non-profit organization focused on increasing awareness, education, and research on endometriosis.

Endometriosis Research Center - a nonprofit research center that offers information on up-to-date endometriosis research and seeks to build awareness and support for women with endometriosis.

Endometriosis UK - a nonprofit organization based in the Unite Kingdom that is committed to providing information on endometriosis and support for women affected by the disease.

Endometrioisis.org - a group that brings together endometriosis sufferers, doctors, researchers, and other interested in this chronic disease. The site provided information on endometriosis, tips and support for coping with the disease, and resources for finding an endometriosis specialist.