By Angie Schaffer
After asking around, it became apparent that not many people know more than vague, often inaccurate details about the disease endometriosis. Physicians and researchers are befuddled about its cause and have created a handful of theories that each explain only part of its puzzling existence. The only cure is a hysterectomy — a complete removal of a woman’s uterus — for a disease that affects 5.5 million women and girls in just the U.S. and Canada alone.
The most commonly known fact about endometriosis is its signature bad cramps. Better words would be “excruciating” and “debilitating,” because women who suffer from this disease are often bedridden during menstruation. Bad cramps, however, are just the beginning. Endometriosis is classified using four levels of severity, and symptoms can include pain, fatigue, bowel and bladder complications, heavy or irregular bleeding and fertility problems. While some women have all of these symptoms, others have none at all.
The symptoms can be traced back to the backbone of the disease: the “migration” of endometrial tissue from the uterus to other parts of the body, usually in the abdominal cavity. This is the tissue that is signaled to fill with blood every month, as part of the menstrual cycle. The theories to explain endometriosis mentioned above focus primarily on how tissue that should be found only in the uterus ends up in other parts of the body. What is not questioned is that once in other parts of the body, this tissue acts just as it would in the uterus — it fills with blood as the hormones command it. Since it has no place to dispense this blood, these “implants” grow larger every month. Prostaglandins, hormones that cause the uterine muscles to cramp, are found in larger quantity in women with endometriosis. Together, implanted endometrial tissue and increased prostaglandins contribute to the pain most sufferers identify with endometriosis.
Treatment options include medication and surgery. Medication can either stop, postpone or not affect menstruation, but generally deals with decreasing levels of hormones that cause the implants to fill with blood. The hope with this treatment is that the restricted hormone levels will cause lesions to shrink. When medication does not work, invasive procedures become a surprisingly common last resort. Laparoscopy, the same procedure used to diagnose endometriosis, can also be used to remove small implants; when they become larger and a larger incision is necessary, the procedure is called a laparotomy. If the endometriosis is very serious, physicians may turn to a hysterectomy, or the removal of the uterus and ovaries. The extent to which this is carried out is dependent on the risks the patient is willing to take.
Kim, a certified medical assistant at Heartland Women’s Healthcare, has found endometriosis to be a common complaint in her line of work.
“About one out of five people who come in have it,” she says. In her experience, hysterectomies for women with endometriosis are fairly common.
“The only way to completely get rid of endometriosis is a hysterectomy,” she says.
And not even this procedure is certain — if the surgeon misses one implant of endometrial tissue, the whole situation can start again, and women who take hormones to control their bodies after the loss of their reproductive organs may be inviting the disease to return.
Kim has seen the ups and downs of the disease every day in her job.
“It’s a long process [to cure endometriosis],” she says. “Sometimes it doesn’t go away; it can get better or worse.”**Additional information for this article was found in *Coping with Endometriosis* by Robert H. Phillips, Ph.D., and Glenda Motta, R.N.**