Endometriosis

Published by Bupa's Health Information Team, January 2011.

This factsheet is for women who have endometriosis, or who would like information about it.

Endometriosis is a condition in which cells that normally line the womb (uterus) grow outside the womb in other parts of the body. These cells go through the same monthly changes as the womb lining itself, sometimes swelling and bleeding into the body.

About endometriosis

If you have endometriosis, cells like the ones found in your womb lining (endometrium) grow on other organs outside your womb. Endometriosis is most common on the ovaries, fallopian tubes and the tissues that hold your womb in place. You can also get endometriosis on or around other organs in your pelvis and abdomen (tummy), such as your vagina, bladder or bowel. Rarely, endometriosis can occur in the space around your lungs.

Normally before you have your period, your endometrium will thicken to receive a fertilised egg. When an egg is released and isn’t fertilised (if you don’t get pregnant), the lining of your womb will break down and will leave your body as menstrual blood (a period). If you have endometriotic tissue elsewhere in your body, it will go through the same process of thickening and shedding, but it has no way of leaving your body. This can lead to pain, swelling and scarring which can damage your fallopian tubes or ovaries and cause fertility problems.

It's estimated that up to 22 out of 100 women have endometriosis. Most women who get it are between 30 and 40 and it's rare in women under 20.
 

Symptoms of endometriosis

The symptoms of endometriosis can vary. You may have no symptoms at all. The most common symptom is chronic pelvic pain that feels like period pain. A chronic illness is one that lasts a long time, sometimes for the rest of the affected person’s life. When describing an illness, the term chronic refers to how long a person has it, not to how serious a condition is.

Other symptoms include:

• pain during sex
• changes to your periods, such as spots of blood before your period is due, irregular bleeding or heavy periods
• painful bowel movements
• extreme tiredness

Endometriosis on your bowel can cause swelling in your lower abdomen or pain when you have a bowel movement. You may also have blood in your faeces during a period. If you have endometriosis on your bladder, it can cause pain when you urinate or blood in your urine during a period.

Symptoms of endometriosis usually get better or disappear after the menopause.

If you get pregnant and have endometriosis, the pain may get better during your pregnancy and then come back after you give birth. Some women find that their pain goes away without any treatment.

Complications of endometriosis

Complications of endometriosis include those listed below.

• The bleeding can form bands of scar tissue (adhesions) that can attach to the organs in your pelvis and abdomen.
• Reduced fertility that may have no obvious cause or may be caused by adhesions forming on or near to your ovaries or fallopian tubes.
• An increased risk of miscarriage or giving birth prematurely.
• Cysts can bleed or rupture, causing severe pain.
• Endometriosis of the intestine can cause your bowel to become blocked or twisted.
• An increased risk of certain types of cancer, particularly ovarian cancer.

Causes of endometriosis

The exact cause of endometriosis is unknown. It can affect any woman of childbearing age.

There are certain factors that may make you more likely to get endometriosis. For example, if you:

• have a mother or sister who has endometriosis
• started your periods early

Diagnosis of endometriosis

Your doctor will ask about your symptoms and examine you. He or she may also ask you about your medical history. You may need to have a vaginal examination.

Your doctor may refer you to a gynaecologist (a doctor who specialises in women's reproductive health).

The only way to be sure that you have endometriosis is to have a gynaecological laparoscopy. This is a procedure used to examine your fallopian tubes, ovaries and womb.

Treatment of endometriosis

There is currently no cure for endometriosis, but treatments are available to manage your symptoms. The type of treatment you have will depend on your age, the severity of your symptoms and whether or not you want to have children.

Medicines

If you need pain relief, you can take over-the-counter painkillers such as ibuprofen. Always read the patient information that comes with your medicine and if you have any questions, ask your pharmacist for advice.

Hormonal medicines reduce the amount of oestrogen in your body. These can help to reduce the size of the endometriosis and ease your symptoms. Some examples are:

• gonadotrophin-releasing hormone (GnRH) analogues (eg buserelin)
• progestogens (eg norethisterone)

The combined oral contraceptive is one of the most common treatments for endometriosis, but it isn't licensed for this condition and is prescribed ‘off-label’. This means the medicine is being used to treat a condition that it hasn’t been licensed for and isn't listed in the patient information leaflet that comes with the medicine. A doctor can legally prescribe outside the licence if he or she feels the medicine will be effective for you.

These hormonal treatments all have different side-effects. Your doctor may suggest trying several hormonal medicines to find one that works best for you. Always ask your doctor for advice and read the patient information leaflet that comes with your medicine.

Some hormonal medicines can harm a developing baby. So, it’s important to use an additional method of contraception (such as condoms or an intrauterine device) to prevent getting pregnant while taking these medicines. Ask your doctor for advice.

Surgery

Surgery can remove areas of endometriosis. It can help to improve your fertility if the endometriosis is interfering with your womb and ovaries.

There are different types of surgery, depending on where the endometriosis is and how extensive it is. The endometriosis may be cut away, or it can be destroyed with heat from an electric current or a laser (endometrial ablation) or by directing a beam of helium gas to destroy the tissue.

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 abdomen and then use a laparoscope to view the inside of your pelvis and remove the endometriosis (this is called keyhole surgery).

If the endometriosis is severe and extensive, you may need a laparotomy operation. This is open surgery and a larger cut will be made in your abdomen.

If you have very severe symptoms, your doctor may advise you to have an operation to remove your womb (and sometimes your ovaries). This is called a hysterectomy.

Your surgeon will give you more information about which option might be best for you.

In many women endometriosis can come back after surgery. Your surgeon may recommend you take hormonal medicines after the surgery to help delay the return of symptoms.

After your treatment

Your doctor may use ultrasound, X-ray or MRI (magnetic resonance imaging) to look inside your pelvis and monitor how the endometriosis is responding to treatment.

For answers to frequently asked questions on this topic, see Common questions.

For sources and links to further information, see Resources.