Ask the expert: what is endometriosis and how is it treated?

Endometriosis is a common condition affecting around one in 10 women in the UK and can occur at any age. As its symptoms can overlap with other conditions, such as irritable bowel syndrome (IBS), diagnosis often takes a long time, on average around eight years from when symptoms first occur. Awareness of the signs and symptoms of endometriosis can help ensure more women receive a diagnosis as early as possible. 

What is endometriosis?

Endometriosis occurs when tissue that lines your womb (endometrium) starts to grow elsewhere and attaches to other organs, usually in your pelvic area and lower tummy, such as your ovaries and fallopian tubes. This causes pelvic pain and can lead to fertility problems. 

Symptoms often worsen according to the stage of your menstrual cycle as endometriosis is affected by levels of the female sex hormone oestrogen. In addition to pelvic pain, common symptoms include heavy and/or painful periods, anaemia, fatigue, painful bowel movements, pain during sex, pain when your bladder is full and sudden urges to urinate. 

What causes endometriosis?

The exact cause of endometriosis is unclear. However, several different factors are thought to play a role.

Genetics may be involved as your risk of developing endometriosis is greater if your mother, sister or aunt has the condition.

Immune conditions may also increase your risk as your blood vessels and lymph vessels, which are vital parts of your immune system, are thought to be the conduits through which endometrial cells from the lining of your womb spread elsewhere.

Your risk of endometriosis is also greater if you have retrograde menstruation. This is a condition where your menstrual blood flows backwards into your pelvis and fallopian tubes. As this menstrual blood contains endometrial cells, it is suggested that this enables the spread of these cells beyond the womb lining.

What are the stages of endometriosis?

There isn’t a universally agreed on set of stages for endometriosis. However, endometriosis is often broadly categorised into four stages, where stage one is minimal, stage two is mild, stage three is moderate and stage four is severe.

This scale of severity refers to the physical signs of endometriosis in your body ie the spread of endometrial tissue and the formation of adhesions, where endometrial tissue causes organs to stick to each other.

However, the physical signs of the disease do not always match up with the symptoms of the disease. For example you may be diagnosed with mild endometriosis but have severe symptoms or you may be diagnosed with severe endometriosis but have few to no symptoms.

How is endometriosis diagnosed?

The diagnosis of endometriosis is a journey that usually starts with seeing your GP to discuss your symptoms and undergo a pelvic examination. Ultrasound scans and MRI scans often can’t detect the disease and there are currently no blood tests or urine tests to diagnose endometriosis either. 

Consequently, a definitive diagnosis can only be reached through a keyhole procedure called laparoscopy. This involves making a small cut in your abdomen through which a telescope-like tube with a light and a camera on the end (laparoscope) is passed to examine the inside of your pelvic area. A special instrument may also be passed inside via another small cut to help move aside internal structures for a clearer view. 

If you have previously had a laparoscopy to treat or investigate another condition, your endometriosis may still not have been detected as endometrial tissue can have many different appearances, which a specialist endometriosis surgeon is best equipped to identify. 

After your diagnosis, depending on the location and severity of your endometriosis, your doctor may recommend further investigations to help plan your treatment. This may include a dynamic pelvic ultrasound scan, MRI scan, colonoscopy (examination of the inside of your bowel) or cystoscopy (examination of the inside of your bladder).

How is endometriosis treated?

Treatment depends on your particular symptoms, their severity and how they affect your quality of life. There are broadly four types of treatment: pain management, hormone treatment, fertility treatment and surgery.

Pain management usually involves taking over-the-counter painkillers and anti-inflammatory drugs. If this is not enough to manage your pain, you can talk to your GP about stronger pain medication.

Hormone treatment focuses on reducing or stopping the production of oestrogen, the hormone that causes your endometrial tissue to grow. This includes the combined oral contraceptive pill and progestogens (artificial versions of the natural hormone progesterone).

If you have endometriosis and are trying to become pregnant, hormone treatment may not be appropriate as it acts as a contraceptive. Your doctor will advise you on which fertility treatments are suitable to increase your chances of conception.

If pain management and hormone treatment are not effective, your doctor may recommend surgery. This involves surgically removing as much of the endometrial tissue outside the womb as possible.

In rare cases, removal of the entire womb (hysterectomy) may be suggested. However, this is a major surgery and is only considered if you no longer want to have children.

Where can you find more information about endometriosis, treatment and support?

The UK charity Endometriosis UK provides information, advice and support for those with endometriosis or those who want to learn more about the condition. The British Society for Gynaecological Endoscopy also lists specialist NHS Endometriosis Centres where patients can be referred for treatment.