Endometriosis: symptoms, how it is diagnosed and how it is treated

What endometriosis is, and where it is found

In endometriosis, tissue similar to the lining of the womb grows outside it, most often on the lining of the pelvis, on the ovaries, and around the womb, bladder and bowel.

This tissue responds to the hormones of the menstrual cycle and can cause inflammation, scar tissue (adhesions) and cysts on the ovaries.

Endometriosis is common between puberty and the menopause. Its cause is not known, and it is more likely if your mother or sister has had it.

Symptoms of endometriosis, and when period pain deserves a medical opinion

Symptoms vary between women. UK guidance from NICE asks doctors to suspect endometriosis when a woman has one or more of these:

• Period pain that affects daily activities and quality of life.
• Pelvic pain lasting six months or longer.
• Deep pain during or after sex.
• Painful bowel movements with periods.
• Pain on passing urine, or blood in the urine, with periods.
• Difficulty conceiving together with any of the above.

Some women have no symptoms, and the amount of pain does not necessarily reflect the amount of endometriosis.

Period pain is often played down. Pain that keeps you from work, study or sleep is worth a medical opinion, in the teenage years too. Endometriosis is one possible cause among several.

More on this: When are periods too heavy? →

Why diagnosis often takes time, and what an assessment involves

Long delays before diagnosis are common. No blood test detects endometriosis, it does not show on every scan, and its symptoms overlap with other conditions.

An assessment usually builds up in steps:

• History: the pain, its timing in your cycle and its effect on daily life.
• Examination: of the abdomen and, with your consent, internally. You can ask for a chaperone.
• Ultrasound: NICE recommends offering a scan with a slim probe in the vagina; if that is not suitable for you, one over the tummy can be considered.
• MRI: sometimes added when deep endometriosis is suspected, for example in the bowel or bladder.
• Laparoscopy: under general anaesthetic, a thin camera passed through a small cut in the abdomen looks at the pelvis directly. As an operation it carries risks, including bleeding, infection and injury to the bowel, bladder or a blood vessel.

A normal ultrasound or MRI scan does not rule out endometriosis, and NICE says that referral may still be needed. Treatment does not have to wait for a laparoscopy.

Treatment aims to control symptoms, and usually begins with pain relief

There is no cure known for endometriosis at present. Treatment aims to control symptoms, and NICE advises basing it on your symptoms, preferences and priorities.

For pain, NICE suggests considering a short trial, for example three months, of paracetamol or an anti-inflammatory painkiller such as ibuprofen. These medicines ease pain but do not treat the endometriosis itself. Anti-inflammatory painkillers can irritate the stomach and may not suit women with stomach ulcers, kidney problems or some types of asthma. Paracetamol can harm the liver above the stated dose.

If pain is not controlled well enough, NICE advises considering other forms of pain management and referral.

Hormonal treatment can reduce pain while it is used, and has side effects

NICE recommends offering hormonal treatment, such as the combined pill or a progestogen. It makes periods lighter or stops them, which can reduce pain, but it does not remove endometriosis that is already there. It does not help every woman, and pain often returns once it is stopped.

Most forms are contraceptives. UK guidance states that they do not affect fertility in the longer term.

• Combined pill or patch: can cause unscheduled bleeding, slightly raises the risk of blood clots and does not suit everyone, for example women who have migraine with aura.
• Hormonal coil: irregular spotting is common in the months after fitting. Occasionally the coil comes out, and rarely it passes through the wall of the womb.
• Progestogen tablets, injection or implant: unpredictable bleeding is the most common side effect. The injection can reduce bone density while it is used and delay pregnancy for many months afterwards.
• GnRH analogues, which switch off the ovaries for a time: they cause a temporary menopause with hot flushes, and bone thinning with longer use, so they are given for a set period only.

Surgery can treat the endometriosis that is seen, but symptoms can return

Surgery is usually discussed when earlier treatment has not helped enough or does not suit you. NICE recommends that it is done as keyhole surgery (laparoscopy), in which areas of endometriosis are cut out or destroyed and cysts on the ovaries treated.

Surgery can relieve pain, but how much it helps differs from one woman to another. Endometriosis can come back even after every visible area has been removed, and a further operation is sometimes needed.

The risks are those of an operation under general anaesthetic, including bleeding, infection and injury to the bowel, bladder, ureters or blood vessels.

Hysterectomy, removing the womb, is considered in some circumstances. It ends periods and the possibility of pregnancy, and is a major operation with risks including bleeding, infection, blood clots and injury to the bladder or bowel. The World Health Organization notes that some women still have symptoms afterwards.

More on this: Gynecological Surgery →

Many women with endometriosis conceive naturally; for some it takes longer

Many women with endometriosis conceive naturally. For some, UK patient guidance says, it can take longer or be more difficult to get pregnant.

Hormonal treatment does not improve the chance of a natural pregnancy, and most forms prevent it, so NICE advises against offering it to women trying to conceive.

When pregnancy is the aim and endometriosis does not involve the bowel, bladder or ureter, NICE recommends offering keyhole surgery because it can improve the chance of a natural pregnancy. It carries the risks of any operation, including bleeding, infection and injury to nearby organs, and surgery on an ovary may reduce its store of eggs.

If you are having difficulty becoming pregnant, your doctor can explain the options and may refer you for fertility tests and treatment.

Living with endometriosis: what to track and what to ask

Endometriosis can be a long-term condition that affects mood and daily life as well as the body, and symptoms can return after any treatment. NICE notes that a pain and symptom diary can help discussions with your doctor. Useful things to record:

• The dates of your periods, and the days you have pain.
• Where the pain is, how strong it is, and what it stopped you doing.
• Pain with sex, with bowel movements or on passing urine.
• What you took for the pain, and how much it helped.

At an appointment it helps to ask what your options are, what the advantages and drawbacks of each are for you, and what may happen if you choose no treatment for now.