An Overview of Endometriosis

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Endometriosis is a disorder in which the tissue that normally lines the uterus grows outside of the uterus. No one is quite sure what causes it, though theories abound.

The Endometriosis Association estimates that the disease affects 5.5 million women in the United States, and many millions more throughout the world. Despite this, it remains one of the most poorly understood conditions of our time.

Symptoms

Endometriosis can manifest itself in a variety of ways. Because the location of the lesions have a great deal to do with the symptoms, each woman's symptoms will vary.

In general, though, some of the hallmark symptoms of endometriosis include:

  • Pelvic pain
  • Pain before and/or after menstruation
  • Severe menstrual cramps (the kind that require more than a few aspirin)
  • Painful intercourse
  • Heavy or irregular menstrual bleeding
  • Painful bowel movements (often involving cycles of diarrhea and constipation)
  • Infertility
  • Intestinal distress (bloating, vomiting, nausea)
  • Bladder pain and/or frequency

Some women with endometriosis don't have any symptoms and may not know they have endometriosis until a problem, such as infertility, is discovered.

Interestingly, the extent or severity of your endometriosis has little correlation to the amount of pain you might experience.

Diagnosis

Currently, the only way to definitively diagnose endometriosis is through laparoscopy (surgery in which a lighted scope is inserted into small incisions in the abdomen). Because visual diagnosis can be tricky, suspected endometriosis is often removed and sent to pathology for histological confirmation.

Physicians who treat endometriosis frequently may be able to feel endometriosis nodules during a pelvic exam and make a preliminary diagnosis based on their findings and a woman's history of symptoms. However, laparoscopy plus biopsy will show conclusive evidence of the disease as well as its extent (and, often treatment can be done at the same time). Use our Doctor Discussion Guide below to start a conversation with your doctor about interpreting your results and more.

Endometriosis Doctor Discussion Guide

Get our printable guide for your next doctor's appointment to help you ask the right questions.

Doctor Discussion Guide Woman

Although there have been attempts at revising the current staging of endometriosis, many physicians use The American Society for Reproductive Medicine's Revised Classification of Endometriosis. The staging form assigns points based on the location and depth of the endometriosis. There are four stages in all.

Treatment

A number of treatment options exist but, with each option, you have to weigh the risks versus the benefits.

Hormonal Treatments

Drugs used to treat endometriosis include those that put a woman into chemical menopause and those that attempt to shrink endometriosis lesions by stopping ovulation (birth control pills and progesterone-only pills or shots).

Side effects may be significant with many of these drugs, and recurrence of symptoms after stopping treatment is a problem.

Pain Medications

Other treatment options include simply treating the pain with painkillers. 

Alternative pain control techniques can also be used, such as nerve blocks and acupuncture. Because endometriosis symptoms often continue even after treatment, some women have found non-traditional means of alleviating symptoms, including herbal remedies, aromatherapy, dietary modifications, vitamin supplements, relaxation techniques, allergy management, and immunotherapy.

Surgery

Conservative surgery is another treatment option. The aim of surgery is to remove or destroy endometriosis and to restore distorted anatomy. When the endometriosis is removed, pain may be relieved. If endometriosis is interfering with fertility, surgery may be able to correct these problems. Today, endometriosis surgery most often involves the use of the laparoscope.

Sometimes it becomes necessary for a woman to opt for radical surgery, including removal of the uterus and ovaries, as well as removal of all endometriosis lesions. This is perhaps the hardest decision that women with endometriosis face.

Hysterectomy used to be a much more common treatment for endometriosis than it is today. However, it may still be necessary when other avenues of treatment have failed. Many times, physicians will also recommend removal of both ovaries (bilateral oophorectomy) at the time of hysterectomy, as some studies suggest this results in greater long-term pain relief.

But there remains the question of whether hysterectomy is the answer for everyone. Some continue to suffer from continued symptoms and a documented existence of the disease even after hysterectomy and bilateral oophorectomy.

Endometriosis and Infertility

When endometriosis affects reproductive organs, fertility can be compromised. Recent research has provided more evidence that minimal or mild endometriosis can also affect fertility.

Researchers have also found that women with endometriosis are at increased risk for elevated levels of APA (antiphospholipid antibodies), which has been linked to recurrent miscarriage, intrauterine growth retardation, and pre-eclampsia.

However, not all women are affected in these ways. And even among those who are, many are still able to conceive.

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Article Sources

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Additional Reading

  • U.S. Department of Health & Human Services. Endometriosis. Updated April 1, 2019.