Endometriosis: a Painful and Baffling Disease

Endometriosis affects an estimated 5 million women of reproductive age in the United States, and an additional 500,000 women in Canada. With endometriosis, tissue normally found in the uterus (i.e., the endometrium) is also found in other areas, such as the ovaries, the bowel and the bladder, causing internal bleeding. Scar tissue, inflammation and other problems can develop, resulting in severe pain, infertility, and even bowel obstruction. The disease affects women of all races and socioeconomic groups, starting in their teenage years through middle age. 47% of women diagnosed with endometriosis had symptoms before age 20. The cause of the disease is unknown, although many theories trying to explain why it happens have been advanced.

Symptoms of endometriosis include:

• Chronic pelvic pain
• Painful periods
• Pain during sex
• Ongoing fatigue
• Painful urination or bowel movements during periods
• Low resistance to infections
• Extensive allergies
• Difficulty becoming pregnant

How is endometriosis diagnosed?

The symptoms above will alert your physician to the possibility of endometriosis. He or she may do a physical exam, looking for cysts and nodules and areas of tenderness or thickening in your pelvis. For a definitive diagnosis, a procedure known as "laparoscopy" is required. This surgical procedure is usually done as an outpatient procedure. After anesthesia is administered, a small cut is made in or near your belly button and gas (carbon dioxide) is instilled to distend the abdomen. Then, a special thin scope is inserted, allowing your doctor to "visualize" or see the internal organs and pelvic cavity. By performing a laparoscopy, your doctor can determine the size, location, and number of endometrial growths. Sometimes, tissue will be removed to confirm the diagnosis. In other cases, your doctor will remove endometrial growths, as part of the treatment, at the same time he or she does the laparoscopy.

Treatment options for endometriosis run the gamut from symptomatic (pain) relief and medications to suppress further growth of endometrial tissue to surgery. Many women affected by endometriosis can live reasonably normal lives. But some women can't long escape the pain, which ranges from mild to excruciating. In some cases, the disease can cause very severe, chronic pain and emotional stress, and make it difficult or impossible for those affected to carry on their normal business and personal activities. This can lead to serious financial difficulties and relationship problems. There is no reason for any woman with endometriosis to suffer in silence or go it alone.

Endometriosis facts at a glance

• Endometriosis is commonly found in 10 to 15% of women between 25 and 44 years of age; it is also found in teenage women.
• Between 25 to 50% of infertile women have endometriosis.
• Severe endometriosis can cause distortion of normal pelvic anatomy, which makes it more difficult to conceive, and partially explains the high incidence of infertility among women so affected.
• Symptoms include: pelvic pain, changes in menstruation, pain with intercourse, pain while defecating or urinating during menstruation, and infertility. Some women with the disease, however, may not have any symptoms at all.
• Treatment is individualized, based on the patient's age, severity of symptoms, and reproductive wishes. Treatments include symptomatic relief, medications to suppress further growth of the endometrial tissue, ovulation blocking agents, and gonadotropin-releasing hormone (GnRH) agonists, surgery to remove the endometrial implants or growths, and hysterectomy.
• Suppressive medical therapy or conservative surgery does not effectively cure endometriosis, and recurrence of the disease is likely. Only by totally stopping ovarian function can doctors prevent the recurrence of endometriosis.
• For help, see your primary care physician or obstetrician/gynecologist. For more information, contact: Endometriosis Association, 8585 N. 76th Place, Milwaukee, Wisconsin 53223 USA, (800) 992-3636 US, Puerto Rico, The Virgin Islands, and the Bahamas, (800) 426-2END Canada, (414) 355-2200, FAX: (414) 355-6065

A great deal of understanding and support is available for those with the problem. For more information, contact:

Endometriosis Association
8585 N. 76th Place
Milwaukee, Wisconsin 53223 USA
(800) 992-3636 US, Puerto Rico, The Virgin Islands, and the Bahamas
(800) 426-2END Canada
(414) 355-2200
FAX: (414) 355-6065
Web: www.endometriosisassn.org/

The American College of Obstetricians and Gynecologists (ACOG)
409 12th Street, S.W.
Washington, D.C. 20024-2188
(202) 638-5577
Web: http://www.acog.org

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