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What is endometriosis?

The endometrium is the tissue that lines the inside of the uterus (womb). Endometriosis is a condition where endometrial tissue is found outside the uterus. It is 'trapped' in the pelvic area and lower abdomen.

Who gets endometriosis?

About 1 in 10 women of childbearing age have some degree of endometriosis. Symptoms typically begin between the ages of 25-40. It can affect any woman. However:

Sometimes it runs in families, so endometriosis is more common in close blood relatives of affected women.

The risk of developing endometriosis is also higher in women who had their first period at an earlier age than average.

The oral contraceptive pill ('the pill') reduces the risk of developing endometriosis. This protective effect may persist for up to a year after stopping 'the pill'.

What causes endometriosis?

The exact cause is not known. It is thought that some cells from the lining of the uterus (the endometrium) get outside the uterus into the pelvic area. They probably get there by passing backwards along the fallopian tubes when you have a period.

The endometrial cells continue to survive next to the uterus, ovary, bladder, bowel, or fallopian tube. The cells respond to the female hormones (oestrogens), just like the lining of the uterus does each month. Throughout each month the cells multiply and swell, and then break down as if ready to be shed at the time of your period. However, because they are trapped inside the pelvic area, they cannot escape. They form patches of tissue called endometriosis.

Patches of endometriosis tend to be 'sticky' and may join organs to each other. For example, the bladder may 'stick' to the uterus. Large patches of endometriosis may form into cysts which bleed each month when you have a period. The cysts can fill with dark blood.

What are the symptoms of endometriosis?

Patches of endometriosis can vary in size from the size of a pinhead to large clumps. Symptoms vary, and include those listed below. In general, the bigger the patches of endometriosis, the worse the symptoms. But this is not always the case. Some women have large patches of endometriosis with no symptoms. Some women have just a few spots of endometriosis, but have bad symptoms.

Painful periods. The pain typically begins a few days before the period and usually lasts the whole of the period. It is different to normal period pain which is usually not as severe, and doesn't last as long. Painful sex. The pain is typically felt deep inside, and may last for a few hours after sex.

Pain in the lower abdomen and pelvic area. Sometimes the pain is constant, but is usually worse before and during a period. Heavy and prolonged periods and other menstrual symptoms may occur. Difficulty becoming pregnant. This may be due to clumps of endometriosis blocking the passage of the egg from an ovary to the fallopian tube.

Uncommon symptoms include pain on passing faeces (motions), pain in the lower abdomen when you pass urine, and blood in the urine or faeces. Very rarely, patches of endometriosis occur in other sites of the body. This can cause unusual pains in various parts of the body which occur at the same time as period pains.

The symptoms caused by endometriosis can be caused by other conditions. So, tests are usually advised to find the cause of the symptoms. Endometriosis is usually confirmed by a laparoscopy. This involves making a small cut in the abdominal wall below the umbilicus (tummy button) under anaesthetic. A 'telescope' is pushed through the skin to look inside. Patches of endometriosis can be seen by the doctor.

How does endometriosis progress?

If endometriosis is left untreated, it becomes worse in about 4 in 10 cases. It gets better without treatment in about 3 in 10 cases. For the rest it stays about the same. Endometriosis is not a cancerous condition, nor does it reduce life expectancy.

What are the treatment options for endometriosis?

Not treating is an option if symptoms are mild and fertility is not an issue. Also, in about 3 in 10 cases, the condition clears and symptoms go without any treatment.

Painkillers such as paracetamol during periods may be all that you need if symptoms are mild. Anti-inflammatory painkillers (ibuprofen, diclofenac, naproxen, etc) may be better than paracetamol. You can take painkillers in addition to any other treatment.

Hormone treatments work by reducing the amount of oestrogen that you make, or by blocking the effect of oestrogen on the endometrial cells. Endometrial cells are dependent on oestrogen (the main female hormone). If the endometrial cells are starved of oestrogen, they do not grow and survive. Patches of endometriosis then gradually shrink and may clear away.

There are various hormone medicines, and one is usually advised by a specialist. All have about the same success rate. They are good at easing pain, but are not thought to help infertility due to endometriosis. Things such as severity of symptoms, age, plans for pregnancy, and possible side-effects are taken into account when deciding on which one to use.

Some women respond to one hormone treatment better than others. Also, the treatments have different possible side-effects. One may be tried and be fine. However, it is not unusual to switch from one hormone treatment to another if the first does not suit.

Surgery is sometimes advised to remove some larger patches of endometriosis. This may ease symptoms and increase the chances of pregnancy if infertility is a problem. If you have completed your family, and other treatments have not worked well, a hysterectomy (removal of the uterus) and removal of the ovaries may be an option. This has a high chance of success for curing the symptoms.