Living with endometriosis

What is endometriosis?

Endometriosis is a condition affecting many women due to the presence of tissue similar to the tissue which lines the inside of the womb. This tissue lies outside the womb it is still affected by the hormonal changes of the monthly menstrual cycle. Like the womb lining the endometriosis tissue grows during the month and bleeds at the time of menstruation (your period).

This swelling and bleeding causes a reaction in the surrounding area and inflammation. It can also cause other organs in the pelvis e.g. bowel, to stick to the area, these are called adhesions.

Is endometriosis common?

Yes! Endometriosis is very commonly found by doctors when examining the pelvis or performing surgery. Another common time for finding endometriosis is during investigation for infertility (failure to become pregnant). It is difficult to say exactly how many women have the condition as it often causes no problems or symptoms. At least a quarter of patients with endometriosis have no symptoms.

What problems does it cause?

The most frequent problem that endometriosis causes is pain. This is usually in the lower abdomen and pelvis and can cause painful intercourse. The pain often starts before the period is due and becomes worse until the start of the period. After this, it eases slowly. If the endometriosis is situated on the bladder or bowel it can cause urinary or bowel symptoms around the time of the period e.g. pain on passing water or diarrhoea.

How did I get it?

Although no-one knows for certain how endometriosis occurs, there are two likely reasons for its development.

Pieces of womb-lining tissue get outside the womb through the Fallopian tubes as it is shed at the time of the period.
Areas of cells outside the womb change into areas of endometriosis under the influence of hormone changes of the menstrual cycle.

You do not "catch" endometriosis nor is there any way in which you can prevent its development.

How does my doctor know I have endometriosis?

You will probably have had an operation called a laparoscopy which allows the doctor to look at the outside of the womb and the surrounding organs through a small tube inserted through the wall of your stomach. Some times it can cause cysts to develop on the ovaries. These gradually fill with blood, which become brown and sticky like melted chocolate as time passes, therefore these are known as "chocolate cysts".

Will it affect my chances of getting pregnant?

As we mentioned earlier, endometriosis is often found when investigating a woman who has been trying unsuccessfully to get pregnant. The presence of even small amounts of endometriosis, even if everything else appears normal, seems to affect the transport and fertilisation of eggs released from the ovary. If the endometriosis is more severe it can affect the release of eggs from the ovary or cause blockage of the Fallopian tubes.

Having endometriosis doesn't mean you can't get pregnant and in fact in some cases pregnancy can alleviate the pain of endometriosis.

How can it be treated?

There are two ways to approach the treatment of endometriosis and both may be used in some cases. The treatment chosen will take into account your problems and the desired outcome from treatment.

Treatment with drugs
Endometriosis tissue is under the influence of the hormone changes of the menstrual cycle. Drugs given for the treatment of endometriosis generally aim to block these hormones and stop the stimulation making the endometriosis grow each month. The treatments are often hormones themselves and can produce lasting relief of symptoms.
These drugs work in a number of ways and although they generally work well and are well tolerated, they do have side effects in a few people. The side effects also vary and if you feel that you have problems with your treatment you must discuss them with your doctor.
Surgical treatment
Another treatment option in endometriosis may be to remove the disease at an operation. This may involve just the removal of the endometriosis spots, or removal of some of the pelvic organs depending on the severity of the disease and patient's problems.
Surgery can sometimes be used to deal with the problems caused by endometriosis such as adhesions or ovarian cysts.

Newer treatments such as laparoscopic treatment with a laser (a small tube inserted through the skin into the pelvis) to the endometriosis are becoming available now, but are not applicable in all cases.

The treatment for your endometriosis will depend on a number of factors and may involve a number of different drugs and/or operations. Your doctor will discuss these choices with you and agree the most appropriate way forward in your case. We hope this has been of some help in explaining the condition. Your doctor will be the best person to explain how the condition affects you, but further information may be obtained from the organisations listed below:


        The National Endometriosis Society
        35 Belgrave Square
        London, SW1X 8QB

        Women's Health Concern        Advice on menopause, HRT and
        PO Box 1629                   gynaecological conditions. Leaflets
        London W8 6AU                 include Endometriosis (No.9).

        The Amarant Trust             News, counselling, information
        Grant House                   re: menopause and HRT.
        56-60 St John Street
        London EC1M 4DT

        Women's Health                Leaflets on the menopause and HRT.
        52 Featherstone Street
        London EC1Y 8RT

        Hysterectomy Support Network  Pre and post-operative support;
        3 Lynne Close                 annual membership; leaflet and
        Green Street Green            booklet available.
        Orpington, Kent BR6 6BS

        Association for Post-Natal    Help, support and education for
        Illness                       women suffering from post-natal
        25 Jerdan Place, Fulham       depression.
        London SW6 1BE