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EndometriosisThis factsheet is for women who have endometriosis, or anyone who would like information about endometriosis. It's estimated that up to one in 10 women and girls have endometriosis. In some women it causes no symptoms, but it can cause severe pain and may reduce the chances of becoming pregnant.
What is endometriosis?Endometriosis (pronounced "en-doh-mee-tree-oh-sis") is where cells like the ones found in the womb lining (endometrium) grow on organs outside the womb. These go through the same monthly changes as the womb lining itself, sometimes swelling and bleeding into the body cavity. This bleeding can cause pain and swelling because, unlike a normal monthly period, the blood from endometriosis can't escape from the body through the vagina. Instead, the blood stays inside the body and may form rubbery bands of scar tissue, called adhesions. These can attach organs and tissues together and affect organs surrounding the womb. Endometriosis is most common on the ovaries, fallopian tubes and the tissues that hold the womb in place. You can also get endometriosis on or around other organs in your pelvis, such as your bladder or bowel. In very rare cases, endometriosis can occur on organs outside the pelvis. Endometriosis can cause cysts (endometrioma) to form on the ovaries. These are also called "chocolate cysts" because of the brown fluid they contain. These cysts may not cause you any pain - you may only find out about them during an internal examination to check your fertility. But if they burst they can cause severe pain and form adhesions. In some women, endometriosis gets better on its own. But for most, it gets worse without treatment. What causes endometriosis?No one knows for certain what causes endometriosis or why some women get it and others don't.
Who gets endometriosis?Endometriosis can affect any woman of childbearing age, regardless of ethnicity. It can also run in families. Women who have low fertility or very painful periods are more likely to have endometriosis. In some women, difficulty becoming pregnant is the first sign of endometriosis. SymptomsThe symptoms of endometriosis can vary: some women have no symptoms at all, while others have severe pain. The most common symptom is pelvic pain that feels like period pain. Other symptoms include:
Endometriosis on the bowel or bladder may cause swelling of the lower abdomen and pain when going to the toilet, or blood in the faeces during a period. Symptoms of endometriosis usually disappear after the menopause. DiagnosisThe only way to be sure that you have endometriosis is for your doctor to look directly inside your abdomen. This needs to be done in hospital using a laparoscope: a thin tube that is inserted through a small cut in the skin just below the belly button (navel). The examination is carried out under general anaesthesia, which means that you will be asleep throughout the procedure and will feel no pain. You will be asked to follow fasting instructions. Typically, you must not eat or drink for about six hours before a general anaesthetic. Some anaesthetists allow occasional sips of water until two hours beforehand. If the doctor finds that you have endometriosis, he or she may remove a small piece of the endometrial tissue for testing. The examination takes about 30 minutes and you usually won't need to stay overnight in hospital. If you have mild or moderate endometriosis, it can sometimes be removed during your examination. TreatmentThere is currently no cure for endometriosis, but treatments are available for managing the symptoms. These aim to:
The type of treatment you have will depend on your age, how severe your symptoms are and whether you want to have children. It's important to talk to your doctor and agree a treatment plan. If your endometriosis is mild, your doctor may suggest drug treatment. If it is severe, you may need to have surgery. In rare cases, it is necessary to remove the womb (hysterectomy) or one or both ovaries (oophorectomy) to treat severe debilitating endometriosis. Pain reliefPainkillers that you would normally take for a headache may help to control the pain if your symptoms are mild. These medicines can cause side-effects, so always check the patient information leaflet that comes with the medicine and ask your pharmacist for advice. Hormonal treatmentHormonal medicines that reduce the amount of oestrogen in your body will reduce the size of the endometriosis and ease your symptoms. Some examples are:
These hormonal treatments all have different side-effects. Your doctor may suggest trying several hormonal medicines to find one that works best for you. Hormonal medicines can harm a developing baby, so you should use a barrier method of contraception (such as condoms) to prevent you becoming pregnant while taking hormones (except oral contraceptives). Treatment with medicines won't cure endometriosis and symptoms usually return when the medicine is stopped. Complementary therapySome women find complementary treatments such as acupuncture, aromatherapy, herbal remedies, and homeopathy are helpful. Your GP can give you advice on these treatments and refer you to a qualified practitioner. Self-helpExpert patient courses are free, six-week courses designed to teach people how to manage pain and live with a chronic condition. Your GP can give you further information and details of your nearest course. SurgeryThe aim of surgery is to remove as much of the endometriosis as possible while still enabling you to have children. You may need surgery if:
The endometriosis may be cut away, or it can be destroyed with heat from an electric current or a laser. This can usually be done by a procedure called laparoscopy (the same procedure you will have had during your diagnosis). Your surgeon will make small cuts in your belly and then use a laparoscope to view the inside of the pelvis (keyhole surgery). For more information, please see the separate BUPA factsheet, Laparoscopy. Sometimes, an "open" operation, with a larger incision may be needed. Your doctor will give you more information about which option is best for you. Outcome of surgeryYour doctor may use ultrasound, X-ray and MRI (magnetic resonance imaging) to look inside your pelvis and monitor how the endometriosis is responding to treatment. Endometriosis can come back after surgery in some women. Your doctor may recommend you take hormonal medicines after the surgery to help delay the return of symptoms. Endometriosis and fertilityEndometriosis may reduce your chances of becoming pregnant. Medicines used to treat endometriosis do not improve fertility, but surgery can do so if the endometriosis is interfering with the normal workings of the womb and ovaries. Some women with endometriosis who want to have children may need fertility treatment. For more information please see the separate BUPA health factsheet, Assisted conception. Further information
Sources
Published by BUPA's health information team, healthinfo@bupa.com, February 2007.
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