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Extreme menstrual cramps, severe stomach aches, diarrhea, and possible infertility - between 10 percent and 20 percent of women in the United States of childbearing age suffer from these symptoms of endometriosis, which comes from the word "endometrium," the tissue that lines the inside of the uterus. When a woman is not pregnant this tissue builds up and is shed each month as menstrual flow.
In endometriosis, tissue that looks and acts like endometrial tissue within the uterus is found outside the uterus, usually inside the abdominal cavity. This misplaced tissue develops into growths or lesions that respond to the menstrual cycle in the same way that the tissue of the uterine lining does. Each month, at the end of every cycle, the tissue builds up, breaks down and sheds. However, unlike menstrual fluid from the uterus, which is discharged from the body during menstruation, blood from the misplaced tissue has no place to go. This results in internal bleeding and inflammation causing pain, infertility, bowel problems and scar tissue that eventually develops into what are known as endometrial lesions, implants, nodules or growths.
Endometriosis can strike women of any socioeconomic class, age, and race. While some women with endometriosis may have severe pelvic pain, others with the condition have no symptoms whatsoever. This chronic disease can disrupt a woman's whole existence - her ability to work, her ability to get pregnant and her relationships with her partner, her children and every one around her. Nothing about endometriosis is simple, and there are no absolute cures.
Endometriosis is most often found in the ovaries, on the fallopian tubes and the ligaments supporting the uterus, in the internal area between the vagina and rectum, on the outer surface of the uterus and on the lining of the pelvic cavity. Infrequently, endometrial growths are found on the intestines or in the rectum, on the bladder, vagina, cervix, and vulva (external genitals), or in abdominal surgery scars. Very rarely, they have been found outside the abdomen, in the thigh, arm or lung.
Physicians use stages to describe the severity of endometriosis:
Minimal or mild endometriosis - endometrial growths that are small and not widespread.
Moderate endometriosis - larger growths or more extensive scar tissue is present.
Severe endometriosis - large growths and extensive scar tissue.
Symptoms of endometriosis
Most commonly, symptoms of endometriosis start years after menstruation begins. Over time, symptoms gradually intensify as the endometriosis growths increase in size. After menopause, the growths shrink away and the symptoms subside. Pelvic pain is the most common symptom; however, the amount of pain is not always related to the severity of the disease. Some women with severe endometriosis have no pain, while others with just a few small growths have incapacitating pain.
Common symptoms of endometriosis include:
- Excessive pain before and during periods (dysmenorrhea)
- Pain with sex (dyspareunia)
- Infertility occurs in about 30 percent to 40 percent of women
- Painful urination during periods
- Painful bowel movements during periods
- Other gastrointestinal upsets such as intestinal pain, diarrhea, constipation and nausea
Endometrial cancer occurs in less than one percent of women who have the disease. When it does occur, it is usually found in more advanced patches of endometriosis in older women. The long-term outlook in these unusual cases is reasonably good.
Endometriosis and infertility
Endometriosis is considered one of the three major causes of female infertility. The extensive scarring and organ damage associated with severe endometriosis is known to cause infertility. However, unsuspected or mild endometriosis is a common finding among infertile women and how this type of endometriosis affects fertility still is not clear. While the pregnancy rates for women with endometriosis remain lower than those of the general population, most patients with endometriosis do not have fertility problems.
Causes of endometriosis
The cause of endometriosis is still unknown. One theory, (the transtubal migration theory), is that during menstruation some of the menstrual tissue backs up through the fallopian tubes into the abdomen, where it then implants and grows. Another theory suggests that endometrial tissue is distributed from the uterus to other parts of the body through the lymph system or through the blood system. A genetic theory suggests that it may be carried in the genes in certain families or that some families may have predisposing factors to endometriosis.
Whatever the cause of endometriosis, its progression is thought to be influenced by various stimulating factors such as:
- Hormones or growth factors.
- Delayed childbearing. Because the hormones made by the placenta during pregnancy prevent ovulation, the progress of endometriosis is slowed or stopped during pregnancy, and the total number of lifetime cycles is reduced for a woman who had multiple pregnancies.
- Dioxin (TCCD) exposure. Dioxin is a toxic chemical byproduct of pesticide manufacturing, bleached pulp and paper products, and medical and municipal waste incineration.
How endometriosis is diagnosed
Diagnosis of endometriosis begins with a gynecologist evaluating a women's medical history. A complete physical exam, including a pelvic examination, also is necessary. Diagnosis of endometriosis only is complete when proven by a laparoscopy, a minor surgical procedure done under anesthesia in which a laparoscope (a tube with a light in it) is inserted into a small incision in the abdomen. A laparoscopy shows the location, extent and size of the growths and will help the patient and her doctor make better treatment decisions.
Treating endometriosis with medication
If pregnancy is an issue, then age may affect the treatment plan. If it is not an issue, then treatment decisions will depend primarily on the severity of symptoms. With mild symptoms, medication for pain may be the only treatment needed. For women with a definitive diagnosis of endometriosis by laparoscopy who are not seeking pregnancy, a physician may suggest hormone treatment. Hormone treatment is most effective when the implants are small. The doctor may prescribe a weak synthetic male hormone called danazol, a synthetic progestin or a combination of estrogen and progestin such as birth control pills.
While birth control pills are the most common medication prescribed for hormone treatment, Danazol (Danocrine®) is also prescribed. It improves symptoms in 80 percent to 90 percent of endometriosis patients and also reduces the size of growths. While side effects with danazol treatment are not uncommon (e.g., acne, hot flashes or fluid retention), most of them are relatively mild and go away when treatment is stopped.
Overall, pregnancy rates following this therapy depend on the severity of the disease. However, some studies have shown that with mild-to-minimal endometriosis, danazol alone does not improve pregnancy rates.
Another type of hormone treatment is a synthetic pituitary hormone blocker called gonadotropin-releasing hormone agonist, or GnRH agonist.
Most importantly, since hormone treatment stops ovarian hormone production and shuts off ovulation, women being treated for endometriosis need to wait until after therapy to try to become pregnant. Loss of bone mineral is another concern with hormone therapy.
It is important to remember that these drugs are unsafe if there is any chance that a woman is pregnant. Although pregnancy is not likely while taking hormone medication, a fetus accidentally exposed to these drugs may develop abnormally. Therefore, careful use of a barrier birth control method such as a diaphragm or condom is essential during treatment.
Treating endometriosis with surgery
Surgery may be the treatment of choice for women with endometriosis who are older and feel the need to become pregnant without a long waiting period after medication. It may also be the choice for those who have severe physical changes due to the disease. In addition, women who are not interested in pregnancy but who have severe, debilitating pain, may also consider surgery.
Conservative surgery attempts to remove the diseased tissue without risking damage to healthy surrounding tissue. This surgery, called laparotomy, is performed in a hospital under anesthesia. The surgeon cauterizes (removes tissue with heat) small areas of endometriosis. Pregnancy rates are highest during the first year after surgery, as recurrences of endometriosis over time are fairly common. Other surgical techniques include using a laser during laparoscopy to vaporize abnormal tissue. This involves a shorter recovery time.
Some patients require more radical surgery to correct the damage caused by untreated endometriosis. Hysterectomy and removal of the ovaries may be the only treatment possible if the ovaries are badly damaged. In some cases, hysterectomy alone without the removal of the ovaries is recommended.
Because endometriosis affects each woman differently, it is essential to learn as much as possible about your condition and to maintain clear, honest communication with your doctor.
This article was reviewed and updated June 2007.
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