Dear Friends:

It has been estimated that approximately five million American women and girls have endometriosis. Endometriosis is a progressive condition in which cells from the endometrium (the lining of the uterus that builds up under the influence of hormones and then is shed monthly as menstrual flow) become implanted in other parts of the body. These 'implants' cause bleeding and scarring and may interfere with fertility and bowel and bladder function.

What is the Cause of Endometriosis?

Although there are many theories, no one has clearly been able to identify the cause of endometriosis. While some experts speculate that a backup of menstrual flow through the fallopian tubes into the abdomen is at fault, this does not explain why endometriosis implants can sometimes be found in such uncommon areas as the skin, lungs, and even the brain. 

What are the Symptoms of Endometriosis?

Not every woman with endometriosis will have symptoms. When symptoms do occur, their severity is believed to be related to the location of the endometrial implants and how deeply they have penetrated the body tissues; however, many women who have minimal symptoms may have extensive implants. The most common symptom experienced is pelvic pain. Some women have this pain just before and immediately after their menstrual period, while other women have continuous pain throughout their menstrual cycle. Other symptoms include, but are not limited to:

• Dysmenorrhea (severe menstrual cramping)
• Leg pain
• Low backache
• Blood in urine
• Premenstrual spotting
• Difficulty urinating
• Pain with bowel movements
• Nausea and vomiting
• Dyspareunia (pain with sexual intercourse)
• Irregular or frequent periods
• Pain after intercourse
• Heavy periods
• Bloating
• Blood in stools

What are the Long-Term Effects of Endometriosis?

Often women with endometriosis will not develop long-term effects. If these problems do occur they can include:

• Infertility
• Ecoptic (tubal) pregnancy
• Bowel obstruction
• Miscarriage
• Kidney and ureter (tubes from the kidneys to the bladder) damage

How is Endometriosis Diagnosed?

Diagnosis of endometriosis begins with a thorough medical history and physical exam by a gynecologist or other physician who specializes in women?s health concerns. Some physicians consider pelvic ultrasound, CAT scan, or MRI useful, especially to identify individual implants, but many health care providers do not consider these tests helpful when trying to determine the extent of endometriosis.

A laparoscopy (insertion of a lighted tube through which the physician can view the inside of your abdomen) may be performed to verify the diagnosis. While the only way to be certain of the diagnosis of endometriosis is by direct visualization, if symptoms are not severe physicians may choose to start treatment without making a firm diagnosis.

What are the Treatment Options for Endometriosis?

Treatment can be medical, surgical, or a combination of both.

Medical treatments include medications for pain relief, such as nonsteroidal anti-inflammatory medications, birth control pills, or progestins (synthetic progesterone) which thin and reduce the size of endometrial implants, as well as medications that prevent the ovary from producing hormones and releasing eggs, known as gonadotropin-releasing hormone (GnRH) agonists.

Surgery may be done for women with severe endometriosis and/or infertility. When endometriosis is diagnosed through a laparoscopy the surgeon will often perform surgical excision of endometrial lesions during the procedure. If the endometriosis and adhesions (scar tissue strands) are extensive, a procedure called a laparotomy (surgical opening of the abdomen) may be performed. 

When a woman no longer desires to have children and is experiencing pain that has not responded to other treatment options, a total hysterectomy (removal of the uterus and ovaries) may be recommended.

In Closing:

At this time, there is no cure for endometriosis; however, effective treatment is possible. It is important to find a specialist who has experience in treating this disease and form a treatment partnership with this professional, making informed decisions regarding your care together.

Further Information:

The Endometriosis Research Center (ERC) provides support for women with endometriosis, educational services to health care providers and patients, and funds research on endometriosis. ERC can be reached by telephone at (800) 239-7280 or visit them on the internet at www.endocenter.org.

The Endometriosis Association offers group support, education to health care providers and the public, funds research, and provides online support and crisis call help. They can be reached by telephone at (800) 992-3636 or on the internet at www.endometriosisassn.org. 

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