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Endometriosis - the facts

We bring you all the facts about endometriosis – a complex disease which can reduce the chances of having a child...

What is endometriosis?

The name comes from the word 'endometrium' – the tissue that lines the inside of the uterus (womb).

Endometriosis occurs when tissue normally found in the womb lining is found outside the womb. The most common sites for endometriosis are the ovaries, the fallopian tubes, the ligaments supporting the uterus, the internal area between the vagina and rectum, the outer surface of the uterus, and the lining of the pelvic cavity. Occasionally, endometrial growths are found on the intestines, bladder, cervix or vulva, in the rectum or in abdominal surgery scars. Very rarely, growths have been found outside the abdomen, in the thigh, arm or lung.

Normally, if a woman is not pregnant, endometrial tissue builds up inside the uterus and is shed each month during her period. Endometrial tissue outside the uterus responds to the menstrual cycle in a similar way. At the end of every cycle, when the uterus sheds its lining, endometrial tissue growing outside the uterus swells and bleed. But unlike the womb lining, blood from this misplaced endometrial tissue has nowhere to go. The surrounding tissues may become inflamed or swollen and the inflammation may make nearby structures stick to each other and form bands of tissue which can cut across loops of bowel. These bands, called 'adhesions', can cause fertility problems by blocking the fallopian tubes which carry the egg from the ovaries and in which the sperm and egg mix to allow fertilisation. Patches of endometrium outside the womb can also form cysts: swellings containing the shed blood.

Severe endometriosis, with extensive scarring and organ damage, is a major cause of infertility. Many women do not have their endometriosis diagnosed until they seek medical help because they are not conceiving.

What are the symptoms?

Endometriosis is a complex disease and the extent of its presence does not automatically correspond to the number or severity of symptoms. So it is possible for a woman to have a number of severe symptoms and very little disease or to have no symptoms and extensive disease. In general, the following are the most common and most easily recognised symptoms:

  • Pain before and during periods: Pain is a difficult thing to measure, but in the case of endometriosis, it does not usually respond to 'over the counter' painkillers and a hot water bottle. Or it may be that it is constant, sometimes developing into spasms. Many women experience pain during periods, but pain before the period starts is also a possible indication of endometriosis.
  • Painful sex: This is a common symptom but, not surprisingly, is seldom spoken about by women with this disease. Painful sex, particularly during deep penetration, may indicate endometriosis.
  • Painful bowel movement: This is perhaps the most difficult symptom to associate with endometriosis. Bowel movement is painful if you are prone to constipation or 'piles', for example. It can also indicate other conditions, like irritable bowel. However, it will almost certainly be worse before and during periods and, in some cases, may be accompanied by blood loss from the rectum. Combined with either or both of the above symptoms, this is a strong indicator of endometriosis.
  • Painful urination: Again, pain before or while passing water can indicate other conditions. However, like a painful bowel, it will be worse before and during periods and can also include blood loss.

There are other symptoms which women with endometriosis report – lower back pain, leg pain, tiredness, depression and general ill health are among them.