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There are many things about this disease that we do not understand. We do not even know how many women have endometriosis, as there is no simple test to diagnose it and many women suffer the symptoms without reporting them to their doctors. One estimate is that seven to 15 per cent of Canadian women have endometriosis. It is a disease of the child-bearing or reproductive years and usually disappears after menopause.
What is Endometriosis? The endometrium is the lining of the uterus. It thickens and swells during the menstrual cycle, making the uterus ready for possible pregnancy. When a pregnancy does not happen, the lining is shed. This shedding forms the menstrual flow.
Endometriosis occurs when bits of the endometrium travel backwards out through the fallopian tubes. They settle on tissues outside the uterus. Endometriosis can be thought of as bits of uterine lining in abnormal places. Sometimes the lining forms cysts filled with blood.
These bits of endometrium may land on the ovaries, the outside of the uterus, or even parts of the bowel or bladder. Once there, they settle and may even grow. The body’s hormones which cause the normal swelling of the endometrium inside the uterus during the menstrual cycle also cause the endometrium outside the uterus to swell. The symptoms of endometriosis are not necessarily related to the extent of disease.
When the tissue swells, it can cause pain which is the most common symptom of endometriosis. The extent of pain does not seem to depend on the amount of endometrial tissue present. Doctors think the pain occurs when the endometrium tissue irritates nearby pain nerves either by releasing chemicals or just by pressure due to its size. These areas become very tender and sensitive to pressure. There may be pain with intercourse. The pain can be mild to severe and may come back after treatment.
The disease can cause scar tissue, creating problems with infertility. Although, most women who suffer infertility because of endometriosis, have only minor conditions of the disease. Often the tubes are not blocked. Instead, it may be that endometriosis affects the ovaries’ ability to produce eggs, or the ability of these eggs to travel through the tubes to the uterus. Women with endometriosis may also have an abnormal menstrual cycle.
Women with endometriosis often suffer much emotional distress. The impact of the pain on their daily lives may cause them problems. Also, they may suffer from uncertainty about what the disease is, how it will affect them in the future, and what it will do to their chances of having children. Finally, the medical and surgical treatments available may be time consuming and emotionally draining.
Having said this, endometriosis is often mild and does not progress. It is a benign disease which means it will not turn into cancer or cause life-threatening problems with the internal organs. Once recognized, treatment is aimed at relieving the suffering from pelvic pain. Many women who are infertile because of endometriosis can also be treated so that pregnancy becomes possible.
Before endometriosis can be treated, it must be diagnosed. Diagnosis can be difficult, as the only test that will give a definite answer involves surgery. Surgery, however, involves some risks and is expensive and time consuming. Therefore, when the symptoms are mild, the diagnosis is based on a medical history and physical exam alone. Treatment can be started and if the symptoms are relieved, surgery is not necessary.
The surgery used is laparoscopy. A small instrument (laparoscope) much like a telescope is put through the wall of the abdomen. The doctor can see the uterus, ovaries, and other tissues such as the bowel and bladder. Endometriosis shows up as small or large blue or brown spots on the surface of these organs.
As in so many other conditions, prevention is the best form of treatment. Although not enough is known about endometriosis to be able to list prevention methods, it is known that women who exercise regularly have a much lower chance of having this disease.
The treatment of endometriosis depends on symptoms and needs, not on the amount of endometriosis. Many women only need information and reassurance that endometriosis is not a dangerous disease. For those who want relief from pelvic pain, simple measures are often enough. For other women, some type of drug or surgical treatment is necessary.
Simple medications can be used. Anti-inflammatory drugs such as Ibuprofen (Motrin™, Advil™, Napr™ Medepin™) or Naproxyn™ can be used to treat pelvic cramps. These drugs work especially well for pain associated with periods. For women who find these drugs ineffective or are unable to use them, or for those who would also like to use birth control, the birth control pill is useful for preventing pain from endometriosis.
Danazol is another medication used for treatment of endometriosis. It is more powerful than the birth control pill and often has unpleasant side effects. For these reasons, this drug is used only with women who do not respond to treatment with anti-inflammatory drugs or birth control pills, or with women for whom these medications are not appropriate. It is taken for three to six months to shrink the endometriosis.
A new group of medications, gonadotropin-releasing hormone agonists, have been helpful for the treatment of endometriosis. These drugs and Danazol both cause temporary menopause when taken for a few months. Periods will stop while a woman is on the medication and will restart within one to two months after the medication is stopped.
Both Danazol and gonadotropin-releasing hormone agonists have also been used to treat infertility in women with endometriosis. However, doctors now think that pregnancy rates may be no better in women with endometriosis who use these medications than in those women who do not. Since both medications have side effects and stop periods for several months, further research is needed into their role in managing infertility from endometriosis.
Laparoscopy may also be used in treating the pain and infertility caused by endometriosis, especially when pills have not been effective. At surgery, using the laparoscope to see the endometriosis, the diseased tissues can be removed with other surgical instruments.
The laser is one of the newest and most popular surgical means of removing the bits of endometriosis that may be scattered over the tissues in the pelvis. The laser is focused upon the endometriosis and is burnt away. Surgery may reduce pain and can also increase the chance of pregnancy for many affected women. Medication such as Danazol may be used before surgery to shrink the endometrial bits so they are easier to treat.
Endometriosis is not life threatening, but it can cause suffering. It causes pelvic pain and can cause infertility. Many mysteries remain about this disease. We are not sure why some women are affected and others are not. We are not sure why some women have severe pain and others with the same amount of disease are not bothered very much. Finally, we do not understand how it prevents pregnancy. Women will benefit from ongoing and future studies of this common disease.
There are endometriosis support groups in many major centres. These can provide educational material and also can be important sources of emotional support.
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