Endometriosis

Next review due September 2023 

Endometriosis is a condition where cells normally found lining your uterus (womb) are also in other parts of your body. Every monthly cycle, these cells can build up and break away in the same way as your womb lining. This causes painful inflammation in surrounding tissues. It’s difficult to cure, but there are treatments that can help.

About endometriosis

About one in every 10 women of child-bearing age has endometriosis. But in women who have very painful periods, it could affect as many as six out of 10. Endometriosis usually disappears after the menopause.

During your menstrual cycle, your womb lining thickens to receive a fertilised egg. If you don’t get pregnant, the lining of your womb breaks down, leaving your body as menstrual blood (a period) each month. This process is controlled by your body’s hormones.

In endometriosis, cells like those that line your womb (endometrial tissue) are also elsewhere in your body. This tissue thickens, breaks down and bleeds with your menstrual cycle. Your body does get rid of the broken down tissue and blood very slowly, but while it’s there it can cause pain, swelling and scarring.

Endometriosis usually affects tissues inside your pelvis. It’s most common in and around the ovaries, the surrounding ligaments and between the womb and rectum (back passage). If you have endometriosis on your fallopian tubes or ovaries, it can lead to . See our FAQ on endometriosis and fertility further down the page. Endometriosis can affect other parts of your body, such as your lungs, but this is rare.

Endometriosis is not a form of cancer, you can’t catch it or give it to anyone else.

Symptoms of endometriosis

One of the most common symptoms of endometriosis is pelvic pain, which is usually worse just before and during your period. The pain may get worse over time and you may find that it doesn’t ease when you take , such as ibuprofen.

Other typical symptoms include:

• pain during sex
• heavy periods
• extreme fatigue
• difficulty getting pregnant (conceiving)

Some women become depressed because of the long-term pain they have.

There are some less common symptoms. Endometriosis on your bowel can cause pain when you have a bowel movement. You may also have blood in your poo during your period. If you have endometriosis on your bladder, it can cause pain when you pass urine. You may also see blood in your pee.

All these symptoms can also be caused by conditions other than endometriosis. If you have any of these symptoms, see your GP.Symptoms of endometriosis often ease during pregnancy, and usually improve or disappear after the .

Some women have no symptoms. You may only find out that you’ve got endometriosis after having tests for other conditions, such as infertility.

Diagnosis of endometriosis

Your Doctor will ask about your symptoms. Don’t be embarrassed to tell them about the problems you’re having – including pain during sex, or seeing blood when going to the toilet. It’s important that they know about these. 

Your Doctor may offer you the following tests. 

• A vaginal or rectal examination.
• An , using a sensor placed in your vagina. This can help to pick up other causes of your symptoms. There is a chance that it won’t pick up endometriosis, even if you have it.

A vaginal examination involves your Doctor inserting gloved, lubricated fingers into your vagina to gently feel for any abnormalities in and around your womb. They’ll use their other hand to press lightly on your abdomen (tummy).

A rectal examination involves your Doctor inserting a gloved, lubricated finger into your anus (back passage). These examinations may feel uncomfortable but shouldn’t be painful. Let your Doctor know if anything hurts. You can ask to have someone stay with you while your Doctor does these tests, if you prefer.Your GP may refer you to a gynaecologist (a doctor that specialises in women’s reproductive health) for further tests.

Diagnosing endometriosis can take time because the symptoms are similar to other health conditions. The only way doctors can be sure is to check with a procedure called a . You have this under  so you’ll be asleep. Your gynaecologist will look inside your abdomen using a laparoscope. This is a narrow tube with an eyepiece that they put in to your abdomen through a small cut. They may take a small sample of tissue (biopsy) to send to the lab for examination under a microscope.

If you have a laparoscopy to diagnose endometriosis, your gynaecologist may remove the endometriosis at the same time. Or they may recommend having surgery to remove it later. See our section on treatment below.

Sometimes, rather than having this procedure right away, your doctor may suggest trying other treatments first, to see if they help.

You might also be offered an magnetic resonance imaging (. This can help to diagnose endometriosis that is deep inside your pelvis, or affecting your bladder or bowel.

Treatment of enodometriosis

In about one in three women, endometriosis gets better on its own over six to 12 months. Other women usually need treatment to reduce their symptoms. Your treatment depends on how bad your symptoms are and whether or not you want to have children.

A number of treatments can help to manage your symptoms, but they don’t always work in the long term. Symptoms come back in up to half of those treated. You may choose to have another course of medication or more surgery if this happens.

Your doctor will discuss the various options with you, and help you decide which treatment is best. 

Pain medicines

Your doctor will probably suggest that you try a non-steroidal anti-inflammatory medicine such as ibuprofen to ease pain and discomfort. You can buy these over-the-counter from your pharmacy. Paracetamol is an alternative. Always read the patient information leaflet that comes with your medicine. If you have any questions, ask your pharmacist for advice. 

Hormone treatments

Hormone treatments can help to reduce areas of endometriosis tissue and so lessen your pain. They aren’t suitable for treating endometriosis in women who are trying to become pregnant.

Your doctor may offer you the combined oral contraceptive pill. This may be for a few months at first, but if it’s helpful, you’ll usually be able to carry on taking it.

If that doesn’t help, or doesn’t suit you, there are several other types of hormonal treatment that your doctor may offer. These include: 

• progestogens, which you can take as tablets, have as an injection every three months or in an intrauterine system (‘coil’)
• gonadotrophin-releasing hormone (GnRH) agonists, which you have as injections, or a nasal spray

Each of these treatments has different side-effects and there may be limits on how long you can take them without a break. Your doctor can explain these and discuss which treatment will suit you best.

Surgery

It’s possible to have areas of endometriosis removed with surgery. If your endometriosis is affecting your fertility, this can help to improve your chance of pregnancy and can also reduce pain. You have surgery for endometriosis under a general anaesthetic so you’ll be asleep. Endometriosis can come 

back after surgery, so you may need to have it repeated in the future.

Laparoscopy (keyhole surgery)

You may have a laparoscopy – a type of keyhole surgery. Your gynaecologist looks inside your abdomen (tummy) by making a small cut and putting in a narrow tube with an eyepiece (laparoscope). Through the laparoscope, they can see and remove or destroy patches of endometriosis.

Laparotomy (open surgery)

If you have severe endometriosis, keyhole surgery may not be suitable. You may need an operation called a laparotomy where a larger cut is made in your abdomen, usually along the bikini line. Your gynaecologist will explain the procedure and why it’s best for you. 

Hysterectomy

If you don’t want to have children in the future, your gynaecologist may suggest a hysterectomy. This is a larger operation to remove your womb and sometimes your ovaries. This operation can also be done using keyhole surgery. If you have your ovaries removed, you are likely to have menopausal symptoms afterwards, such as hot flushes. Your specialist may suggest taking . Talk to your gynaecologist about the pros and cons of this type of surgery, and see our FAQ on hysterectomy.

Causes of endometriosis

Doctors don’t really know yet why people get endometriosis. There are lots of different ideas about how it develops. It’s probably caused by a combination of factors. For example, your immune system or hormones might play a role. Endometriosis may also run in families, as you’re more likely to get it if your mother or sister has it.

Complications of endometriosis

Some complications of endometriosis are listed below.

• Scar tissue can attach to organs in your pelvis and abdomen (tummy). These scars are known as adhesions and can cause pain. They may also cause your bowel to become blocked.
• You may have difficulty getting pregnant (reduced fertility). This affects as many as half of all women with endometriosis.
• Endometriosis increases your risk of getting . These can rupture and cause pain and reduced fertility.

Endometriosis is not a cancer and doesn’t cause cancer. Overall, the risk of all types of cancer is no different for women without endometriosis. But statistically, there is a slight increase in risk of . In one study, two out of every 100 women without endometriosis developed ovarian cancer, compared to three out of 100 with endometriosis.

Speak to your GP or doctor if you have any questions about the complications of endometriosis.