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What is endometriosis?

Endometriosis is a common, yet poorly understood disease that can strike women of any socio-economic class or race. The name endometriosis comes from the word “endometrium,” which is the tissue that lines the inside of the uterus. Normally, if a woman is not pregnant, this tissue builds up and is shed each month as menstrual flow (your period). Endometriosis occurs when this tissue grows outside the uterus on the surfaces of organs in the pelvic and abdominal areas where it does not normally grow. Tissues surrounding the area of endometriosis may become inflamed or swollen, leading to the development of scar tissue. After menopause, the abnormal implants shrink away and the symptoms subside.

In what places, outside of the uterus, does endometriosis grow?

Most endometriosis is found in the pelvic cavity, including:

  • on or under the ovaries.
  • behind the uterus.
  • on the tissues that hold the uterus in place (uterosacral ligaments).
  • on the bowels or bladder.

In extremely rare cases, endometriosis areas can grow in the lungs or other parts of the body. When the disease affects the ovary, large patches of endometriosis may form into cysts that are filled with dark blood, and are called ‘chocolate cysts’ or endometriomas.

What are some symptoms of endometriosis?

One of the most common symptoms of endometriosis is pain, mostly in the abdomen, lower back and pelvic areas. The severity of pain a woman feels is not linked to the amount of endometriosis. Some women experience no pain even though their endometriosis is extensive, which means that the affected areas are large or there is scarring. Some women, on the other hand, have severe pain even though they have only a few small areas of endometriosis. The following are some symptoms of endometriosis:

  • extremely painful (or disabling) menstrual cramps.
  • lower backache.
  • intestinal and pelvic pain.
  • pain during or after sex.
  • painful bowel movements or painful urination during menstrual periods.
  • heavy menstrual periods, or spotting or bleeding between periods.
  • infertility.
What can raise my chances of getting endometriosis?

You are more likely to develop endometriosis if you:

  • began getting your period at an early age.
  • have heavy periods.
  • have periods that last more than seven days.
  • have a short monthly cycle (27 days or less).
  • have a close relative (mother, aunt, sister) with endometriosis.
How can I reduce my chances of getting endometriosis?

Some studies suggest that you may lower your chances of developing endometriosis if you exercise regularly and avoid alcohol and caffeine.

Does endometriosis make you infertile?

Severe endometriosis with extensive scarring and organ damage may affect fertility. It is considered one of the three major causes of female infertility; about 30 percent to 40 percent of women with endometriosis are infertile. While the pregnancy rates for patients with endometriosis remain lower than those of the general population, most patients with endometriosis may not experience fertility problems. For those with endometriosis-related infertility, it is often treated successfully with hormones, Assisted conception and fertility enhancing surgery.

How do I know if I have endometriosis?

Currently, health care providers use a number of tests for endometriosis. The two most common are imaging tests - ultrasound, a machine that uses sound waves to produce images of organs and systems within the body and magnetic resonance imaging (MRI), a machine that uses magnets and radio waves to provide an image. The only way to know for sure is by having surgery. The most common type is laparoscopy. The surgeon uses a small viewing instrument with a light, called a laparoscope, to look at the reproductive organs, intestines and other surfaces to see if there is any endometriosis. The diagnosis can be confirmed by doing a biopsy, which involves taking a small tissue sample and studying it under a microscope.

Does endometriosis cause endometrial cancer?

Endometrial cancer is very rarely associated with endometriosis, occurring in less than one per cent of women who have the disease. When it does occur, it is usually found in more advanced patches of endometriosis in older women and the long-term outlook in these unusual cases is reasonably good.

What is the cause of endometriosis?

The cause of endometriosis is still unknown. One theory is that during menstruation some of the menstrual tissue backs up through the fallopian tubes into the abdomen, where it implants and grows.
Another theory suggests that endometriosis may be a genetic process or that certain families may have predisposing factors to endometriosis. Several studies have shown that the incidence of endometriosis is much higher in women having a sister or mother who has already had endometriosis. There was a study conducted involving more than 150 women with endometriosis; of these, 18 (12 percent) were found to have a mother or sister with endometriosis. However, in the same group of women, only two (1.5 percent) showed that they had a mother-in-law or sister-in-law who had endometriosis. This clearly shows that there is a familial tendency with endometriosis. Some studies of late, also present the theory that certain lifestyle choices and stress can contribute to the development of endometriosis. But there is very little conclusive evidence to prove this.

How would my doctor know if I had endometriosis?

Diagnosis of endometriosis begins with a gynecologist evaluating the patient's medical history. A complete physical exam, including a pelvic examination, is also necessary. However, diagnosis of endometriosis is only complete when proven by laparoscopy, a surgical procedure in which a laparoscope (a tube with a light in it) is inserted into a small incision in the abdomen. The laparoscope is moved around the abdomen, which has been distended with carbon dioxide gas to make the organs easier to see. The surgeon can then check the condition of the abdominal organs and see the endometrial implants. The laparoscopy will show the locations, extent and size of the growths and will help the patient and her doctor to make better-informed decisions about treatment.

Is it true that women who have their tubes tied are protected against endometriosis?

Theoretically, blockage of the tubes by tubal ligation or by any other cause (for instance, pelvic inflammatory disease) should protect against endometriosis. However, a recent investigation of women requesting tubal ligation reversal has not supported this concept. The prevalence rates for endometriosis were found to range from 2 percent through 12 percent in two studies. When an infertile population is studied, these rates range from 5 percent through 35 percent.

Is it true that intercourse during the menstrual cycle increases the risk of endometriosis?

This has not been proved. It has been suggested that intercourse during menses might increase tubal activity and increase the backflow of the menstrual cycle through the tubes and thus increase the risk of endometriosis. However, there are no statistics to bear this out.

Is there a characteristic menstrual cycle of the woman who has endometriosis?

Yes. Many studies have shown that women with endometriosis begin their menstrual cycle at a significantly younger age than women without the condition. Endometriosis is more prevalent in women who have a regular cycle than in women who have an irregular cycle. Another interesting characteristic is that patients with endometriosis have a shorter interval between their periods (less than 27 days). Severe menstrual cramps are also seen much more frequently in endometriosis. It has been shown that the chance of having endometriosis is four times greater in patients with severe menstrual cramps as compared to women with mild menstrual cramps. Another point is that patients with a prolonged menstrual flow are more likely to have endometriosis. If the menstrual flow is longer than a week, the risk of developing endometriosis is 2.5 times greater than in women who have a menstrual flow lasting less than a week.

Are you seeing more endometriosis in younger women today?

We are diagnosing this disease right now in a younger age group of women. Twenty-five years ago, our diagnosis was mainly based on severe symptoms and palpable masses in the pelvic area, and was confirmed by laparotomy. Patients were typically in their mid or late 30s. However, with the use of laparoscopy, the typical age at which the diagnosis is being made has dropped significantly. Currently, it is somewhere in the mid to late 20s. We are expecting a further decline in the average age of diagnosis because of the added knowledge of the disease in younger women and also the availability and increased use of laparoscopy in confirming diagnosis.

Do you see endometriosis after menopause?

Normally, no. This is because the growth of endometrial implants are dependent upon the female hormone. After menopause, the ovaries cease to produce the hormones that promote the growth of endometriosis and we usually do not see many cases. However, after menopause, there are two factors which may promote or maintain endometriosis. One is the use of estrogen replacement therapy and the other is the presence of high endogenous estrogen in obese patients.