What is endometriosis?

Endometriosis occurs when endometrial tissue, which should only be found in the uterus (womb), also grows in places outside the uterus. As part of the menstrual cycle the endometrium (tissue which lines the uterus) grows and is shed during a period. In endometriosis, tissue deposits outside the uterus respond to the same hormones, ie, they enlarge and can bleed and cause inflammation. Scar tissue, cysts and adhesions can develop. Pelvic pain is a common symptom and fertility may be affected.

Who gets endometriosis?

Endometriosis is common, affecting about one in 10 girls and women of reproductive age.

What causes endometriosis?

The cause of endometriosis is not fully known, but it is thought there may be a genetic (inherited) component, so it may run in families. It is likely the cause is multi-factorial, and research continues in this area.

Symptoms of endometriosis

The most common symptom of endometriosis is pelvic pain. The pain is usually associated with the menstrual cycle; however, women with endometriosis may also experience pain at other times during the month. For many women, the pain can be severe and debilitating.

The tissue growing outside the uterus (womb) can form lesions on places such as the pelvic lining (peritoneum), ovaries, bowel, ligaments and ‘pouch of Douglas’ (the area between the uterus and rectum). In rare cases endometriosis can be found in other parts of the body.

Symptoms of endometriosis include:

• pain with periods (dysmenorrhoea)
• bowel problems, eg, bloating, diarrhoea, constipation, pain with bowel movements, painful wind
• painful intercourse (dyspareunia)
• sub-fertility or infertility
• tiredness and low energy
• pain in other places such as the lower back
• pain at other times, eg, with ovulation
• premenstrual syndrome (PMS)
• abnormal menstrual bleeding
• pain before or with urination, recurrent urinary tract infections (UTIs), or interstitial cystitis (inflammation of the bladder causing painful urination).

If you experience symptoms regularly you may need referral to a gynaecologist (usually via your GP).

Grades of endometriosis

Endometriosis is often classified as mild, moderate or severe, though different grading systems may be used.

• Mild grade endometriosis appears as small patches or surface lesions scattered around the pelvic cavity.
• Moderate grade endometriosis appears as larger widespread disease starting to infiltrate tissue and often found on the ovaries, uterosacral ligaments and pouch of Douglas.
• Severe grade endometriosis affects most of the pelvic organs, often with distortion of the anatomy and adhesions.

These grades can have limitations, eg, the extent of endometriosis is not generally related to the symptoms experienced.

How is a diagnosis made?

Some doctors and gynaecologists may suspect endometriosis based on your medical history and symptoms. Scans, blood tests and other investigations may be offered to rule out other causes. A physical examination of the pelvis is often performed. These tests do not diagnose endometriosis on their own.

The only definitive way to diagnose the disease is by a surgical procedure called a laparoscopy. This is done under a general anaesthetic by a specialist gynaecologist. This procedure involves a small incision being made just below the navel. A lighted telescopic instrument called a laparoscope is inserted through the incision and the pelvic organs can be seen. During this procedure tissue can be removed for testing, and endometriosis lesions can be removed, or organs which have become stuck together or to the pelvic wall can be separated.

What treatment is available?

As the cause of endometriosis is still not understood, no particular treatment will provide a permanent cure. The most suitable treatment for you will depend on many factors, including:

• your age
• whether you plan to have children
• the severity of the symptoms
• the extent of endometriosis
• your preference.

A multi-disciplinary holistic approach is considered best practice treatment, which can include surgical, medical and management options. In recent times gynaecologists specialising in endometriosis are favouring surgical resection of the disease as the gold standard treatment, sometimes combined with medical therapy. A referral to a gynaecologist who has a special understanding and skill in treating pelvic pain and endometriosis is recommended.

All treatment options should be explored so that a long term individualised treatment plan can be arranged. Unfortunately endometriosis is known to recur, and repeat treatment procedures are sometimes necessary.

Medical treatment

Medications may be used in the management of endometriosis. There is no evidence that medical treatment improves fertility outcomes, but it can improve symptoms. The types of medical treatment are usually either to relieve pain and inflammation, or to work on reducing the growth of the endometriosis itself.

Some common medications:

• Oral contraceptives (the pill) are often prescribed for you to try first if it is appropriate. The pill can be used effectively to relieve symptoms and regulate periods. The pill can also mask the symptoms of endometriosis.
• Hormonal medications aim to reduce the growth of endometriosis by suppressing oestrogen production. Sometimes these drugs are used in conjunction with surgery to ‘dampen down’ active endometriosis. Hormonal medications can have significant side effects so it is important you understand how they work and can make informed choices. These may be given as an injection, pill, or an intrauterine device or system (IUS).
• Many pain relief medications are available, some without prescription. Get expert advice on the most suitable one for you from a pharmacist, your GP or specialist.
  
• Complementary remedies may also help to relieve pain.

Surgical treatment

Surgery is used to reduce symptoms and improve the chances of fertility (chance of becoming pregnant).

Laparoscopic surgery is the only definitive way to diagnose endometriosis, which is usually removed at the same time. The success of surgery depends greatly on the skill of the surgeon and the thoroughness of the surgery. The aim is to remove all endometriosis lesions, cysts and adhesions, and restore normal anatomy. As with all surgery there is an element of risk, which should be discussed with your surgeon.

A hysterectomy is a procedure to remove the uterus and cervix, and is sometimes recommended in severe cases of long-standing painful and extensive endometriosis. Removal of one or both ovaries (oophorectomy) may be considered also if they have been damaged with cysts (endometrioma). However, if both ovaries are removed, symptoms of menopause will usually be experienced immediately or very soon after surgery. Hormone replacement therapy (HRT) may be recommended and will depend on factors such as age, medical history and personal choice.

While symptoms of endometriosis are often eliminated or helped by hysterectomy, it does not ‘cure’ endometriosis, and it is essential the endometriosis is removed at the same time to help prevent symptoms continuing. Discuss surgical procedures thoroughly with your specialist.

Sometimes symptoms persist even after major surgery and will require thorough review to find the cause.

Effects on women's lives

The effects of the disease on a woman can be serious and far-reaching. It can be distressing to live with a chronic condition like endometriosis. It can cause a great deal of anxiety if it results in a woman having fertility problems.

Taking a look at health habits can determine where lifestyle improvements can be made. Changing the diet can improve bowel-related symptoms. Some women find that their symptoms improve when they use complementary therapies and remedies.

Endometriosis New Zealand can provide more information and support (contact details further below).

Original material provided by Endometriosis New Zealand. Edited by everybody, March 2011.