Endometriosis

Symptoms of endometriosis vary from person to person. In some cases there are no symptoms.

However, the most common symptoms include:

Painful periods.
Heavy periods.
Pelvic pain.
Pain during sexual intercourse.
Bleeding in between periods.
Subfertility (difficulty in becoming pregnant) or infertility.
Low backache.

Other symptoms may include:

Difficulty or discomfort when urinating.
Bleeding from your back passage (rectum).
Bowel blockage (if the endometrial tissue is in the intestines).
Coughing blood (if the endometrial tissue is in the lung).

How severe the symptoms are depends largely on where the endometriosis is within your body, rather than the amount of endometriosis you have. A small amount of the condition may be equally or even more painful than a large amount.

Causes of endometriosis

Retrograde menstruation

This is the process of the womb lining (endometrium) flowing backwards through the fallopian tubes and into the abdomen, instead of leaving the body as menstrual blood. This tissue then embeds itself onto the organs of the pelvis and grows, becoming endometriosis. It is believed that this happens to most women, but that most are able to clear the tissue naturally without it becoming a problem.

Genetic disposition

Endometriosis is sometimes believed to be hereditary, being passed down through the genes of family members. It is rare in women of Afro-Caribbean origin and more common in Asian women than in white (Caucasian) women. This suggests that genetics may be involved.

Spreading through the bloodstream or lymphatic system

Although it is not known how, endometriosis cells are believed to get into the bloodstream or lymphatic system (a network of tubes, glands and organs that is part of the body's defence against infection). In very rare cases, endometriosis cells are found in remote places such as the eyes or brain. This theory could explain how they get there.

Immune dysfunction

It is believed that some women are not able to effectively fight off endometriosis. Many women with the condition are said to have lower immunity to other conditions.

Metaplasia

This is the name given to the process of one type of cell changing into another. It is this development which allows the human body to grow as a natural process in the womb before birth. It has been suggested that endometriosis can develop when the baby's womb is first forming, or that the womb can retain the ability to transform cells.

Diagnosing endometriosis

For a diagnosis to be made, you have to be referred to a specialist for an examination called a laparoscopy. For this procedure you will be placed under a general anaesthetic and a special viewing tube with a light on the end (a laparoscope) is passed into your body. The laparoscope has a tiny camera which transmits images to a video monitor so that the specialist can view the endometrial tissue. He or she will then either take a small sample (a biopsy) for laboratory testing, or insert other surgical instruments to treat the endometriosis.
The area of your body where the laparoscopy will be inserted depends on where the specialist thinks the endometrial tissue is. Because many women have symptoms around their pelvis and lower abdomen (tummy), the laparoscope is usually inserted into the pelvis through the navel (belly button).
Your surgeon may also carry out other examinations to rule out other medical conditions when the endometrial tissue occurs in another part of your body.

Treating endometriosis

There is no known cure for endometriosis, but the aim of treatment is to ease the symptoms so that the condition does not interfere with your daily life. This can be done in a number of ways including through pain medication, hormone treatment, or surgery.
Pain medication:
Non-steroidal anti inflammatories (NSAIDS), such as ibuprofen and naproxen, are usually the preferred treatment as they act against the inflammation caused by endometriosis, as well as helping to ease pain and discomfort. Paracetamol can be used to treat mild pain. It is not usually as effective as NSAIDS, but may be used if NSAIDS cause any side effects. Codeine is a stronger pain killer that is sometimes combined with paracetamol or used alone if other pain killers are not suitable. However, constipation is a common side effect, which may aggravate the symptoms of endometriosis.
Hormone treatments:
Hormone treatments aim to limit or stop the production of oestrogen in your body, as it is this hormone that encourages endometriosis to develop. Without exposure to oestrogen, the endometrial tissue can be reduced and this helps to ease your symptoms. Hormone treatments stop the production of oestrogen by putting you in either an artificial state of pregnancy or an artificial state of menopause, stopping your periods. Once your periods have stopped, the endometriosis is no longer aggravated. However, it is important to note that, with the exception of the oral contraceptive pill, these treatments are not contraceptives. There are four broad types of hormone-based treatment:

Progestogens - this type of treatment will stop egg release (ovulation) and can help to shrink endometrial tissue. They can have side effects such as bloating, mood changes, irregular bleeding and weight gain. Drug names include medroxyprogesterone acetate, dydrogesterone and norethisterone.

Antiprogestogens - also known as testosterone derivatives, this type of treatment simulates menopause by decreasing the production of oestrogen and progestorone. The side effects can include weight gain, acne, mood changes and the development of masculine features (hair growth and deepening voice). Drug names include danazol and gestrinone. Gestrinone is known to have fewer unpleasant side effects.

Combined oral contraceptive pill - although it is not officially licensed for the treatment of endometriosis, the Pill can help to relieve milder symptoms and can be taken over long periods of time. It stops the function of the ovaries, which in turn stops the menstrual cycle. It is not suitable for smokers over the age of 35 due to an increased risk of heart disease. The Pill can have side effects, but you can experiment with different brands until you find one which suits you.

Gonadotrophin-releasing hormone (GnRH) analogues - like antiprogestogens, this type of treatment works by creating an effect similar to after the menopause. When taken continuously for over two weeks, the production of oestrogen is stopped. Because they often have side effects such as hot flushes, difficulty sleeping, vaginal dryness, low libido, and headaches, GnRH analogues are recommended alongside HRT (Hormone Replacement Therapy), which is usually used to reduce the symptoms of menopause. Drug names include buserelin, goserelin, nafarelin, leuprorelin and triptorelin.

Treating endometriosis

Pain medication:

Non-steroidal anti inflammatories (NSAIDS), such as ibuprofen and naproxen, are usually the preferred treatment as they act against the inflammation caused by endometriosis, as well as helping to ease pain and discomfort. Paracetamol can be used to treat mild pain. It is not usually as effective as NSAIDS, but may be used if NSAIDS cause any side effects. Codeine is a stronger pain killer that is sometimes combined with paracetamol or used alone if other pain killers are not suitable. However, constipation is a common side effect, which may aggravate the symptoms of endometriosis.

Hormone treatments:

Hormone treatments aim to limit or stop the production of oestrogen in your body, as it is this hormone that encourages endometriosis to develop. Without exposure to oestrogen, the endometrial tissue can be reduced and this helps to ease your symptoms. Hormone treatments stop the production of oestrogen by putting you in either an artificial state of pregnancy or an artificial state of menopause, stopping your periods. Once your periods have stopped, the endometriosis is no longer aggravated. However, it is important to note that, with the exception of the oral contraceptive pill, these treatments are not contraceptives. There are four broad types of hormone-based treatment:

Progestogens - this type of treatment will stop egg release (ovulation) and can help to shrink endometrial tissue. They can have side effects such as bloating, mood changes, irregular bleeding and weight gain. Drug names include medroxyprogesterone acetate, dydrogesterone and norethisterone.
Antiprogestogens - also known as testosterone derivatives, this type of treatment simulates menopause by decreasing the production of oestrogen and progestorone. The side effects can include weight gain, acne, mood changes and the development of masculine features (hair growth and deepening voice). Drug names include danazol and gestrinone. Gestrinone is known to have fewer unpleasant side effects.
Combined oral contraceptive pill - although it is not officially licensed for the treatment of endometriosis, the Pill can help to relieve milder symptoms and can be taken over long periods of time. It stops the function of the ovaries, which in turn stops the menstrual cycle. It is not suitable for smokers over the age of 35 due to an increased risk of heart disease. The Pill can have side effects, but you can experiment with different brands until you find one which suits you.
Gonadotrophin-releasing hormone (GnRH) analogues - like antiprogestogens, this type of treatment works by creating an effect similar to after the menopause. When taken continuously for over two weeks, the production of oestrogen is stopped. Because they often have side effects such as hot flushes, difficulty sleeping, vaginal dryness, low libido, and headaches, GnRH analogues are recommended alongside HRT (Hormone Replacement Therapy), which is usually used to reduce the symptoms of menopause. Drug names include buserelin, goserelin, nafarelin, leuprorelin and triptorelin.

Surgery:
Surgery can be used to remove areas of endometrial tissue and this can help with the symptoms. Adhesions ('sticky' areas of endometriosis that can cause organs to stick together) can also be removed. The kind of surgery you have will depend on where the tissue is.
Often it is carried out as 'keyhole' surgery (also known as minimally invasive surgery) during a laparoscopy, and may include the use of laser surgery techniques. This type of surgery is sometimes called 'conservative' surgery as it has a lesser impact on your body.
Like any surgical procedure, this surgery carries risks, which you should discuss which your surgeon. Although this kind of surgery can relieve your symptoms, they can recur over time. This is because it is very difficult to remove all the traces of endometriosis at any one time.
If conservative surgery and other treatments have not worked and you have decided not to have any more children, then a hysterectomy (removal of the womb) can be an option. There are several different ways this can be done, including:

Total hysterectomy - removal of the womb and the cervix.
Sub-total hysterectomy - removal of just the womb.
Total hysterectomy with bilateral salpingo-oophorectomy - removal of the womb, cervix, ovaries and fallopian tubes.

Treating endometriosis

Progestogens - this type of treatment will stop egg release (ovulation) and can help to shrink endometrial tissue. They can have side effects such as bloating, mood changes, irregular bleeding and weight gain. Drug names include medroxyprogesterone acetate, dydrogesterone and norethisterone.
Antiprogestogens - also known as testosterone derivatives, this type of treatment simulates menopause by decreasing the production of oestrogen and progestorone. The side effects can include weight gain, acne, mood changes and the development of masculine features (hair growth and deepening voice). Drug names include danazol and gestrinone. Gestrinone is known to have fewer unpleasant side effects.
Combined oral contraceptive pill - although it is not officially licensed for the treatment of endometriosis, the Pill can help to relieve milder symptoms and can be taken over long periods of time. It stops the function of the ovaries, which in turn stops the menstrual cycle. It is not suitable for smokers over the age of 35 due to an increased risk of heart disease. The Pill can have side effects, but you can experiment with different brands until you find one which suits you.
Gonadotrophin-releasing hormone (GnRH) analogues - like antiprogestogens, this type of treatment works by creating an effect similar to after the menopause. When taken continuously for over two weeks, the production of oestrogen is stopped. Because they often have side effects such as hot flushes, difficulty sleeping, vaginal dryness, low libido, and headaches, GnRH analogues are recommended alongside HRT (Hormone Replacement Therapy), which is usually used to reduce the symptoms of menopause. Drug names include buserelin, goserelin, nafarelin, leuprorelin and triptorelin.

Total hysterectomy - removal of the womb and the cervix.
Sub-total hysterectomy - removal of just the womb.
Total hysterectomy with bilateral salpingo-oophorectomy - removal of the womb, cervix, ovaries and fallopian tubes.

A hysterectomy operation is sometimes called 'radical' surgery as it is a major operation that will have a significant impact on your body. Deciding to have one is a big decision, which you should discuss with your GP or gynaecologist. Hysterectomies are irreversible, and there is no guarantee that the endometriosis will not recur even after the operation.
No treatment at all is an option if the symptoms are mild and there are no problems with subfertility (difficulty in getting pregnant) or infertility. In about a third of cases, endometriosis gets better by itself without treatment. It is also possible to keep an eye on the symptoms and decide to have treatment if they get worse. Support from self-help groups can be very helpful if you are learning to manage endometriosis.

Complications of endometriosis

The main complication of endometriosis is difficulty in getting pregnant (subfertility) or not being able to get pregnant at all (infertility). Surgery can improve fertility by removing endometrial tissue but there is no guarantee that it will allow you to conceive.
Other problems include the formation of adhesions, which are 'sticky' areas of endometrial tissue that can fuse organs together, and ovarian cysts (fluid-filled swellings in the ovaries) where the endometrial tissue is in or near the ovaries. In some cases these can become very large and painful. Both of these complications can be removed through surgery, but may recur if the endometriosis returns.