Endometriosis

Endometriosis is an unusual disease. The best way to diagnose and treat the disease confounds both patients and physicians. Endometriosis is defined as "the presence of endometrial-like glands and stroma in any extrauterine site." In other words, the cells that are normally found in the uterus, that grow and are then shed during the menstrual period, are found outside the uterus. Although this describes the pathologic entity "endometriosis" it does not describe the disease endometriosis.

The disease of endometriosis is characterized by pelvic pain. Pain may be sporadic; it tends to increase before and during the menstrual period and may occur during sexual intercourse. Endometriosis (even without associated pain) is also associated with primary infertility. Women may have visible endometriosis (called implants) in their pelvis with no associated symptoms or problems achieving pregnancy. Conversely women who have pain and endometriosis implants could have another disease causing their symptoms.

Dr. Von Rokitansky first described the disease endometriosis in 1860. Since that time there have been many theories as to its cause. Currently it is thought that the majority of endometriosis comes from a process called retrograde menstruation. During the menstrual period endometrial tissue travels backwards through the fallopian tubes. This is a process that occurs in 70-90% of women but obviously not all these women have the disease of endometriosis. It is thought that a combination of genetic factors, childbearing history and both immunologic and hormonal factors cause some women to develop symptomatic implants. Interactions between different components of the immune system, notably natural killer cells, macrophages and cytokines prevent the normal clearance of menstrual debris from the pelvis and thus allow the formation of endometriosis implants.

Traditionally endometriosis was diagnosed by a diagnostic laparoscopy. A woman would go to her gynecologist complaining of pain or infertility, a laparoscopy was done, endometrial implants were seen and the diagnosis made. If no endometriosis was seen she was told that she did not have endometriosis. If a lot of implants were seen she had severe disease, if only a few implants were seen she had mild disease. However it was puzzling why the amount of visible endometriosis didn’t seem to correlate with the patient’s symptoms. As experience with laparoscopic surgery increased it became apparent that there are many different and subtle appearances to endometriosis implants, they can be red, white, blue, black, yellow, clear, raised or flat or appear as defects in the lining of the pelvis. We now know that women with minimal visible disease may have nodules that are deep beneath the pelvic lining that are capable of causing significant pain. Conversely visible or large implants may not be the cause of a woman’s pain.

Once the diagnosis of endometriosis is suspected or made a treatment plan is developed. It is important to keep in mind that we need to treat the disease endometriosis and not just the pathologic entity. Surgically eradicating all visible endometriosis implants does not guarantee that the woman will have relief of her symptoms. Medical treatments even after surgery are needed both to treat remaining endometriosis that was not visible and to prevent recurrences. Endometriosis and its associated symptoms can be very frustrating to affected women. Chronic pain can cause depression, an inability to sleep, and decreased coping skills. It is important to address these issues along with the medical treatment of the underlying disease. This can be through a combination of medications and behavioral therapy such as relaxation techniques.

The treatment of endometriosis related infertility is equally frustrating. It appears that medical treatment alone does not offer any benefit in achieving conception (partly because all medical treatment of infertility prevents ovulation) but surgical treatment may improve the pregnancy rate.

Although sometimes difficult to diagnose and always difficult to treat endometriosis can be controlled through the use of medicines and surgery. Women with endometriosis should stay informed about all the options available for treating this disease.