What is endometriosis?

Endometriosis occurs when tissue normally found inside the uterus (womb) grows in other parts of the body. It may attach to the ovaries, fallopian tubes, the exterior of the uterus, the bowel or other internal structures. As hormones change during the menstrual cycle, this tissue breaks down and may cause painful adhesions or scar tissue. Around two million women in the UK are affected by endometriosis.

Endometriosis symptoms

Pain just before, during or after menstruation is the most common symptom of endometriosis. For some women, this pain may be disabling and may occur during or after sex or during bowel movements or urination. It sometimes causes chronic pain in the pelvis and lower back. The symptoms may be related to the location of the collections of endometrial tissue. However, many women with endometriosis have mild or no symptoms.

Just cramps or endometriosis?

Endometriosis can be hard to diagnose. The charity Endometriosis UK says the average time from first symptoms to diagnosis is eight years. Most women have some mild pain with their menstrual periods. They may get relief from over-the-counter pain medication. If your pain lasts more than two days, keeps you from doing normal activities, or remains after your period is over, you should seek medical advice. Endometriosis also may cause pain in the lower back.

Endometriosis and teenagers

Endometriosis pain can begin in the teenage years. If your menstrual pain is severe enough to interfere with activities, you should seek medical advice. The first step may be tracking the symptoms and taking pain medication, but ultimately the treatment options for teenagers are the same as for adults.

Endometriosis and infertility

Sometimes the first - or only - sign of endometriosis is trouble getting pregnant. Infertility is the main complication of endometriosis, for reasons that are not yet well understood. Scarring may be to blame. The good news is that medical treatments are effective to overcome infertility and pregnancy itself can relieve some symptoms of endometriosis.

Endometriosis or fibroids?

Endometriosis is one cause of severe menstrual pain, but the pain can be caused by another condition, such as fibroids: noncancerous growths of the muscle tissue of the uterus. Fibroids can cause severe cramps and heavier bleeding during your period. The pain of endometriosis or fibroids can also occur at other times of the month.

What causes endometriosis?

Doctors don't know exactly why endometrial tissue grows outside of the uterus, but there are several theories. Genes play a role and some endometrial cells may be present from birth. The cells might also migrate to the pelvic area during menstruation (retrograde menstruation), through the bloodstream, or during surgery such as caesarean delivery. A faulty immune system may fail to eliminate the misplaced cells.

The brown cells seen here are endometrial cells removed from an abnormal growth on an ovary.

Endometriosis: Who is at risk?

Endometriosis is more common in women who:

• Are aged 25 to 40
• Have not had children
• Have periods longer than seven days
• Have cycles shorter than 28 days
• Started their periods before the age of 12
• Have a mother or sister who has endometriosis

Diagnosis: Tracking symptoms

Your pattern of symptoms can help to identify endometriosis, including:

• When the pain occurs
• How bad it is
• How long it lasts
• A change or worsening of pain
• Pain that limits your activities
• Pain during intercourse, bowel movements or urination

Diagnosis: Pelvic examination

A doctor may perform a pelvic examination to check the ovaries, uterus and cervix for anything unusual. An examination can sometimes reveal an ovarian cyst, or internal scarring that may be due to endometriosis. The doctor also checks for other pelvic conditions that could cause symptoms similar to endometriosis.

Diagnosis: Pelvic scans

Although it isn't possible to confirm endometriosis with scanning techniques alone, your doctor may arrange an ultrasound, CT scan or MRI to help with diagnosis. These may be able to detect larger endometrial growths or cysts. The scans use sound waves, X-rays or magnetic fields to create the images.

Diagnosis: Laparoscopy

Laparoscopy is the only sure way to determine if you have endometriosis. Under general anaesthetic, a surgeon inflates the abdomen with gas through a small incision in the navel. A laparoscope is a viewing instrument that's inserted through the incision. The surgeon can take small pieces of tissue for examination in a laboratory to confirm the diagnosis. This is called a biopsy. 

Treatment: Pain medication

Pain medications such as paracetamol and nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen often help relieve the pain and cramping that comes with endometriosis. However, these drugs only treat the symptoms and not the underlying endometriosis.

Treatment: Contraceptive pills

Oral contraceptives manage your levels of oestrogen and progestogen, which can make your menstrual periods shorter and lighter. That often reduces the pain of endometriosis. Your doctor may recommend taking three packs of the Pill continuously, with no breaks for a menstrual period, or taking the progestogen-only pill. Progestogen-only therapy can also be given by injection, implant or with a specific type of coil. Endometriosis symptoms may return after you stop taking the Pill.

Treatment: Other hormone therapies

These drugs mimic menopause, eliminating periods along with endometriosis symptoms. Gonadotrophin-releasing hormone (GnRH analogues) block production of female hormones. They can cause hot flushes, vaginal dryness, fatigue, mood changes and loss of bone density. Anti-progestogens work by lowering oestrogen. They also have some weak androgen (male hormone) activity. Side effects can include weight gain, smaller breasts, acne, facial hair, voice and mood changes, and birth defects.

Treatment: Laparoscopic surgery

During a laparoscopy, the surgeon may remove visible endometrial growths or adhesions or burn them away with intense heat. Most women have immediate pain relief. However, symptoms can recur, especially if some endometriosis tissue is left behind. The likelihood of recurrence increases over time. Hormone therapy after surgery may improve the outcome.

Treatment: Open surgery

Severe cases of endometriosis may require laparotomy, or open abdominal surgery, to remove growths, or even a hysterectomy - removal of the uterus and possibly all or part of the ovaries. Hysterectomies cannot be reversed, and it is possible that the endometriosis may still return after the operation.

Getting pregnant with endometriosis

Many women with endometriosis don't have trouble getting pregnant. However, laparoscopic surgery can significantly improve the pregnancy rate of women who have moderate to severe endometriosis. In vitro fertilisation (IVF) is an option if infertility persists. The sperm and egg are combined in a laboratory and the resulting embryo is implanted into the uterus.

Coping with endometriosis

Although there is no way to prevent endometriosis, you can make lifestyle choices that will help you feel better. Regular exercise may help reduce pain by improving your blood flow and producing endorphins, the body's natural painkillers. Acupuncture, yoga, massage and meditation also may be helpful in easing symptoms.

An end to endometriosis?

For most women, endometriosis recedes with menopause. Some women find relief from endometriosis during pregnancy. In some cases, particularly for women with mild endometriosis, the symptoms go away on their own.

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