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Endometriosis Fact Sheet

What is endometriosis?
Endometriosis is a condition where fragments of endometrial tissue (the tissue that normally lines the inside of the womb) are deposited outside the womb. These deposits become "trapped" mainly in the pelvis and lower abdomen - growing on the ovaries, fallopian tubes, bladder, bowel, uterine surface and other pelvic organs. Occasionally they can be deposited in other areas such as the lung or diaphragm.

The deposits of endometriosis respond to the same hormones as the endometrium, so can enlarge, bleed and cause inflammation during the menstrual cycle. They can gradually enlarge, forming cysts called endometriomas ("chocolate cysts"). The inflammation causes organs and tissue to stick together, forming scar tissue and adhesions.

If untreated, approximately 4 in 10 cases of endometriosis will get worse over time. Some will regress and improve without treatment, and some will stay the same.

What are the symptoms?

Most common:
Painful periods (mild - severe; the amount of pain does not correlate with the extent of the disease);
Painful intercourse;
Fertility problems (due to the scarring and adhesions in the pelvis);
Bowel symptoms (frequently pain with bowel movements, excess wind, constipation or diarrhoea; especially during or prior to menstruation);

Other symptoms:
Abnormal menstrual bleeding (prolonged, heavy, irregular, inter-menstrual spotting);
Ovulation pain;
Abdominal bloating;
Pain when passing urine;
Low back pain;
Lethargy and tiredness.

Endometriosis can be entirely asymptomatic.

Who suffers from it?
It can affect women of all ages, including teenagers, but usually recedes after the menopause. The exact rates are unknown (as it is so often asymptomatic) but best estimates show that between 1 in 10 and 1 in 5 New Zealand women have some degree of endometriosis. It can run in families. The combined oral contraceptive pill ("the pill") is protective.

How is it diagnosed?
The history of painful periods is suggestive of endometriosis. Once you have talked to your doctor, they will need to perform an internal examination to exclude other causes for your pain. An ultrasound scan will be performed, but unless there are large cysts present (endometriomas) it will usually be normal. The only definitive test for endometriosis is a laparoscopy - this is "keyhole surgery" where a small camera is inserted into the abdomen. The surgeon can see the patches of endometriosis, and if suitable they can often be removed at the same time.

How is it treated?
There are a variety of treatments available to help the symptoms of endometriosis, however unfortunately none of them can completely cure the disease. Your doctor or specialist will be able to help you decide which treatment option might be the most suitable for you, and which is funded for your condition. The aim of treatment is to relieve symptoms, shrink or slow the endometrial growth, prevent or delay recurrence, and if possible to help preserve or restore fertility.

1. Pain relief - such as paracetamol, anti-inflammatories (ibuprofen, diclofenac, naproxen) and codeine may be needed to control pain;
2. Hormone treatments - these aim to reduce or block the effect that oestrogen has on the endometrial cells; this then causes the patches of endometriosis to shrink and clear away. Options include the combined oral contraceptive pill (which may be "tricycled" for great effect), the mirena IUS or coil; progestogens such as provera or primolut; testosterone derivates such as danazol; GnRH analogues such as goserelin and nafarelin. All of these options may cause hormonal side effects, and cannot be used for anyone trying to conceive;
3. Surgery - occasionally surgery is recommended. This will usually be "conservative", aiming to remove or destroy the endometrial growths using heat or laser at the time of laparoscopy. More radical surgery is rarely needed, but if the patient has completed their family a hysterectomy might be considered which has a high chance of successfully treating the symptoms.

If symptoms are mild, and fertility is not an issue, endometriosis does not necessarily require any treatment at all.

Further information:
Visit the New Zealand Endometriosis Foundation for further information, support and advice - or call their helpline on 0800 733 277.