This chronic, painful condition is one of the most common gynaecological complaints, affecting around two million women in the UK. Jane Feinmann investigates its causes and cures

Endometriosis is a condition in which fragments of the endometrium, the tissue that normally lines the womb, can migrate to other parts of the pelvic area and even further afield. For a reason that doctors don’t fully understand, this tissue becomes implanted and starts growing on other organs in some women. And once implanted, the endometrial tissue continues to respond to the monthly menstrual cycle, causing internal bleeding that has no outlet as well as pain inflammation and the formation of scar tissue.

Recognising the symptoms
Many women with endometriosis have no symptoms at all. It is commonly noted for example at the time of a sterilization operation, when the deposits are seen, but have produced no problems. When symptoms do occur, they vary considerably in type and severity. You should consider the possibility of endometriosis if you have unusually heavy, painful periods or pain during or after sex, or when having a bowel movement or passing urine. These symptoms can be caused by a whole range of other clinical problems, however, which explains why it frequently takes several years before women with endometriosis get a proper diagnosis.

The only way to diagnose endometriosis is by a laparoscopy, a minor operation carried out by a hospital gynaecologist. A miniature telescope is inserted into the pelvis through a small cut near the navel, enabling the surgeon to see any endometrial implant. Your doctor may also suggest that you are tested for the condition if you are having fertility problems, as it accounts for about 6 per cent of cases of infertility.

Next page: Treating the condition

Treating the condition
Endometriosis can be successfully treated with a number of different drug and surgical therapies, though all have some associated drawbacks and side effects. It’s worth bearing in mind that although potentially painful, this condition is never malignant nor is it necessarily progressive, and only around a third of women with mild endometriosis go on to develop a more serious condition.

If you can cope with over the counter pain relief during menstruation, perhaps along with recommended complementary therapies such as acupuncture, aromatherapy or reflexology, that’s almost certainly the best solution. However, for women with severe or disabling symptoms, the following drug options are available:

• Testosterone derivatives such as Danazol or Gestrinone. These drugs suppress rather than cure symptoms and can cause major side effects including weight gain, acne, cramps and tiredness.They can also cause some masculinising symptoms such as deepening of the voice and increased hair growth.
• Synthetic progesterone such as Provera. Again, this only suppresses symptoms and can cause breast tenderness, irritability and depression.
• GnRH analogues such as Zoladex, Synarel or Seprecur. These hormonal treatments bring about a state of false menopause and are usually prescribed only when other treatments fail. They are effective at relieving the pain of endometriosis but are likely to cause hot flushes and other menopausal-type symptoms.
• Combined oral contraceptive or the Mirena intrauterine system (IUS). These mimic the hormonal effects of pregnancy, have minimal side effects and relieve pelvic pain and cramps in eight out of ten women. They’re no use, however, if the treatment is aimed at improving fertility, as both are highly effective contraceptives.
• Conservative surgery aimed at removing and destroying the endometrial growths. This is usually carried out by laparoscopy or laparotomy, the latter being an operation in which the abdominal area is cut open. Apart from the immediate discomfort, surgery has fewer side effects and lasts longer than drug treatments; it is usually recommended when a woman wants to become pregnant right away. However, it carries the same risks as any invasive procedure.
• Hysterectomy, the last resort treatment for women whose lives are seriously disabled by the condition, may be performed after all other treatments have been ruled out.

Five questions to ask your GP

1. What can I do to help control my symptoms?
2. Will pain medication make me feel better?
3. How might endometriosis affect my sex life?
4. Will endometriosis affect my ability to have children?
5. Are there surgical options other than a hysterectomy? If I’m recommended this surgery, how will I know that the surgeon has expertise in this area?

The National Endometriosis Society is a UK charity devoted exclusively to this disease. It provides a national helpline, available 365 days a year on freephone 0808 808 2227, as well as details of local support groups, a quarterly newsletter, a website on www.endo.org.uk publications and fact sheets.