Symptoms and Diagnosis

What are the symptoms of endometriosis?

Common symptoms of endometriosis are:

• Painful periods
• Pain on sexual intercourse
• Pelvic pain
• Pain before or whilst opening the bowels
• Pain when the bladder's full
• Some ovarian cysts
• Difficulty falling pregnant

The exact symptoms depend on the position and extent of endometriosis. However, it's also possible for women to have severe endometriosis and have no symptoms at all. On the other extreme, some women have very little endometriosis and yet have severe symptoms. We don't yet understand why this is the case.

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How does endometriosis cause pain?

The endometriosis cells are under the influence of the same hormones as the lining of the womb, so internal bleeding can occur at the same time as your periods.

The endometriosis cells can stimulate inflammation and the formation of scar tissue. This scar tissue can lead to the formation of bands between pelvic organs (adhesions). These reduce the mobility of pelvic organs, cause stretching and with it pain.

Endometriosis on the ovaries can lead to the development of cysts, which contain dark brown old blood. Because of the appearance of the contents, these are called chocolate cysts. The swelling caused by chocolate cysts leads to pain.

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Does endometriosis cause all pelvic pain?

No. Conditions that affect the bowel and bladder can also cause similar symptoms, as can blocked fallopian tubes, ovarian cysts and adhesions due to infection or following surgery. Disorders of the pelvic floor and the muscles of the lower abdomen can also cause pelvic discomfort. Finally, psychological factors may also play a part in how we respond to pain, as well as occasionally being the cause. It's important to recognise that pelvic pain can be due to more than one problem.

Common Myths

• Pregnancy cures endometriosis. Pregnancy leads to changes in the mother's hormones which make the pain go away during the pregnancy and for a variable length of time after the birth. But the pain virtually always comes back.
• Hysterectomy not cures endometriosis. The painful periods will stop, as the womb is removed, but unless the endometriosis is also removed the other pains will continue. A standard hysterectomy does not remove the endometriosis, so it is important to ask your gynaecologist whether the endometriosis will be removed.
• Removing ovaries or the natural menopause cures endometriosis. When the periods stop, so does the period pain. But where endometriosis has caused scar tissue to form, the scar tissue remains and so does the pain.

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Diagnosing endometriosis

Because there are several causes of pelvic pain, it can be difficult to diagnose endometriosis. The following are good clues, and when present should raise the possibility of endometriosis. It is unusual for women with endometriosis to have all the features, but the more of them that are present the more the likely is the diagnosis of endometriosis.

Your story

• A history of painful periods, beginning in puberty, with pain that often starts before the periods and gets worse with the period is very suggestive of endometriosis. Pain with sex, when opening your bowels, or with passing urine are also good indicators.

An internal examination

• A gynaecological examination, particularly of the back of the upper portion of the vagina can be very helpful. In the more severe type of endometriosis the scar tissue produces nodules in this area and these can be felt by the doctor examining you and may reproduce your symptoms.

Ultrasound scan

• The scan must be performed through the vagina, and may show an endometriosis cyst on the ovaries. These cysts are also called chocolate cysts because they contain old blood, which when released looks like chocolate. The appearance of these cysts is very typical on an ultrasound scan, and if found there is a significant chance that there is more severe endometriosis present in addition to the chocolate cyst.

MRI scans

• These can show chocolate cysts as well as scar tissues in the pouch of Douglas (the area between the vagina and the back passage).

Despite all these pointers to the diagnosis of endometriosis, in some women we do not find any abnormality, despite a strong clinical suspicion of the diagnosis, and a laparoscopy is needed. Even in women where the findings have suggested endometriosis, a laparoscopy is needed to confirm the diagnosis and document the extent of the disease. This information helps to plan the best course of treatment.

Laparoscopy

• Laparoscopy involves passing a telescope into the abdomen through a small cut in the belly-button, under a general anaesthetic. This is the "gold standard" for diagnosis. Despite a lot of suggestive features, some women do not have endometriosis at laparoscopy. This too is helpful, to focus on other causes of pelvic pain. (I will provide pictures of endometriosis)

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