by Penny Newman

Created on: April 27, 2008   Last Updated: April 29, 2008

ENDOMETRIOSIS: A MISUNDERSTOOD DISEASE

It took more than 10 years, enduring multiple tests and visiting a variety of doctors before I received my diagnosis of endometriosis. This would be expected if the disease was rare, but it is actually quite common. According to Taber's, this disease occurs in 10% to 15% of actively menstruating women between the ages of 25 and 44. Still, many women and young girls must suffer needlessly because doctors, even gynecologists, are not trained to recognize the symptoms, resulting in years of pain and suffering before a diagnosis is made.

This is a disease in which uterine tissue that normally grows inside the uterus starts growing outside the uterus instead. These growths are called implants. They are tiny, but can be very painful. These implants can grow on different organs, most often these include the bowel, bladder, fallopian tubes, and ovaries, but they can be found elsewhere too. Over time, these implants can really cause havoc. My appendix was the first organ that was removed as a result of this disease, and my doctor told me that it was "unidentifiable." The implants had completely distorted this organ, and it was sticking to my abdominal wall. At another time, a doctor told me, "I hate operating on patients who have had endometriosis. Everything is all stuck together."

Symptoms of endometriosis will vary depending on the severity of the disease and where the implants have grown, but they include pelvic pain, pain with intercourse, excessive urination, diarrhea (often bloody), painful bowel movements, heavy bleeding, nausea, vomiting, irregular menstrual bleeding, fatigue, lower back pain, and hip joint pain. Some patients experience no symptoms at all. These symptoms can occur at any time, although they may be worse during menstrual periods. As the disease progresses, it is more likely a patient will experience these daily, rather than just during a menstrual period.

Unlike ovarian cancer, endometriosis is not malignant. It is a benign condition and it is not cancerous. A person cannot die from endometriosis; however, endometriosis has been known to cause bowel obstruction, which could result in death.

Treatment is available once a diagnosis is made; however, there is no cure. The only way to make a definitive diagnosis is through a laparoscopy. This involves making a small incision in the abdomen and using a thin telescopic device to investigate. The good news is that the condition can also be treated at the same time, cauterizing the visible implants. Drugs that mimic the effects of menopause are also a treatment option. If symptoms are less severe and the disease is caught early enough, certain birth control pills may help. For advanced disease, removal of the uterus and ovaries is also a treatment option. This is usually only performed after drugs and laparoscopies have failed.

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