Endometriosis is a condition affecting 10 percent to 20 percent of women; it is a condition that can cause debilitating pelvic pain and infertility. The disease has long been under-recognized and under-treated.
Today, women, foundations, and physicians are leading a new movement—in the United States and worldwide—to properly diagnose and treat women with this disease. Most recently, a worldwide study found the economic burdens of the disease to be significant. The economic burden may not be important to a suffering individual, but the realization that a particular disease leads to significant loss of working days and health-care expenditures results in increasing awareness of its impact. This, in turn, leads to dollars spent on research to improve treatments—and ultimately to help women.
Endometriosis is a condition in which the tissue that normally lines the uterus, termed the endometrium, is found outside the uterus. This tissue, which is referred to as ectopic endometrial tissue, is located predominantly in the pelvis. It can be on the top of the rectum, the ovaries, the Fallopian tubes, or the bladder. This tissue can also be found in other parts of the abdomen, the lungs, and even the brain. The misplaced endometrial tissue is responsive to the monthly cycles in a woman’s hormone that result in bleeding each month. This bleeding into the pelvis or abdomen can lead to pain (usually pelvic), scarring of tissues, and infertility.
The symptoms of endometriosis can range from mild pelvic pain just before and during a woman’s period to crippling pain throughout the month. Other symptoms associated with endometriosis include bladder pain, rectal pain, pain with intercourse and sex, rectal bleeding, or urinary tract bleeding. Some women with significant endometriosis have no pain at all.
Getting a Diagnosis
No one really understands the cause of endometriosis and whether it can be prevented. Endometriosis should be suspected when a woman has severe pain with her periods, heavy periods, or any of the symptoms noted below. Without recognition and diagnosis, treatment cannot be initiated. Women must talk to their physicians if they are having debilitating pain with their periods or significant pelvic pain. What was once labeled as “bad period pain” may indeed be due to endometriosis, and no longer should women be expected to suffer in silence during these days of each month.
Endometriosis is typically diagnosed by a surgical procedure called a laparoscopy, or belly-button surgery. During this surgery, a thin, lit tube is placed into the pelvic and abdominal cavity; these regions are inspected and biopsies of any abnormal areas are taken. Pictures are usually taken in order to document the amount and location of the disease. Endometriosis of the ovaries, called endometriomas, can also be diagnosed on an ultrasound.
Treatment for endometriosis typically consists of hormonal treatments such as birth-control pills, progestins, ovarian suppression of hormone production, or surgical resection. Surgical resection may consist of resection of disease only, removal of a portion of an ovary, or hysterectomy with or without removal of the ovaries.
Treatment of the condition is dependent on treatment goals (whether to relieve pain or to treat infertility) and desires for future fertility. Treatment options can be varied and controversial. Most recently there has been a growing movement in favor of resection of the disease. Clinicians are also employing, with more frequency, pelvic-floor physical therapy techniques, along with diet and nutrition interventions to help women. Newer data also suggest that treatment with a type of drug usually used to treat breast cancer—aromatase inhibitors—may also be effective in helping to control endometriosis pain. Unfortunately, many women with severe pain will ultimately resort to narcotics.
While endometriosis is a very common condition, it can be quite difficult to treat. A general gynecologist most often treats mild and moderate endometriosis with birth-control pills, other hormones, and/or Lupron (a drug that temporarily shuts down the ovaries). Lupron may be given alone or with “add back” estrogen or progestin.
Moderate and severe endometriosis is generally treated by physicians and gynecologic surgeons who have a special interest in the condition. This may be a physician with additional training in reproductive endocrinology, gynecologic oncology (due to the complex nature of the surgery related to the disease), or those with additional training and skills in minimally invasive surgery.
If you suspect that you may have endometriosis based on the symptoms listed below, review this with your physician.
If, based on the symptoms above, you suspect that you may have endometriosis, review this with your physician. Make sure that you get answers to your questions and solutions to your problems.