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Endometriosis

Endometriosis is a medical condition where cells like those lining your uterus (womb) are found in other parts of your body. Every month these cells react like your womb lining, building up and then breaking away. This inflames the surrounding tissues, causing pain which is often worse just before and during your period.

If you have endometriosis, you’re not alone. About one in every 10 women is affected. It mostly affects women of childbearing age and usually disappears after the menopause. Endometriosis is often a long-term condition, with no simple cure. But there are treatments which can help.

An image showing the location of the womb and surrounding structures

About endometriosis

Normally, as part of the menstrual cycle, your womb lining thickens every month to receive a fertilised egg. If an egg doesn’t get fertilised (if you don’t get pregnant), the lining of your womb breaks down. This lining leaves your body as menstrual blood (a period). This process is controlled by your body’s hormones.

In endometriosis, you have cells like those that would normally line your womb (endometrial tissue) elsewhere in your body. This tissue will also thicken, break down and bleed with your menstrual cycle, but this tissue and blood has no way of leaving your body. This can lead to pain, swelling and scarring.

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

Endometriosis is not a form of cancer, and it isn’t contagious (doesn’t spread from person to person).

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’s not eased by taking over-the-counter painkillers such as ibuprofen.

Other typical symptoms include pain during sex and heavy bleeding during your periods. If you’re trying for a baby you may find that you have difficulties becoming pregnant. You may feel extremely tired. 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 faeces 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 urine.

All these symptoms may be caused by things other than endometriosis. If you have any of these symptoms, see your GP.

Symptoms of endometriosis often ease during pregnancy, and usually get better or disappear after the menopause.

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

Have a look at our Health Blog post on symptoms of endometriosis.

Graphic showing the first common symptom of endometriosis: Painful or heavy periods
Graphic showing the second common symptom of endometriosis: Pain in your lower abdominal area
Graphic showing the third common symptom of endometriosis: Painful sex
Graphic showing the fourth common symptom of endometriosis: Problems with fertility
Graphic showing the fifth common symptom of endometriosis: Feeling depressed

Diagnosis of endometriosis

Your GP will ask you 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 GP may offer you the following tests.

  • A vaginal or rectal examination. A vaginal examination involves your GP inserting gloved, lubricated fingers into your vagina to gently feel for any abnormalities in and around your uterus (womb). At the same time, they’ll use their other hand to lightly press on your abdomen (tummy). A rectal examination involves your GP inserting a gloved, lubricated finger into your anus (back passage). This may feel uncomfortable but shouldn’t be painful. Let your GP know if anything hurts. You can ask to have someone stay with you while your GP does these tests, if you prefer.
  • An ultrasound scan. Ultrasound uses sound waves to produce an image of the inside of the body. To look for endometriosis, an ultrasound scan may be done using a sensor placed in your vagina. An ultrasound scan may be helpful in picking up other causes of your symptoms. It doesn’t always pick up endometriosis, even if you have it.

Your GP may refer you to a gynaecologist (a doctor that specialises in women’s reproductive health) for further tests.

It may take some time for you to get a diagnosis of endometriosis because the symptoms are similar to some other health conditions. The only way doctors can be sure that you have endometriosis is to check through a procedure called a laparoscopy. This is carried out under general anaesthetic so you’ll be asleep. Your gynaecologist will look inside your abdomen using a narrow tube-like telescopic camera (laparoscope) that they insert through a small cut. They may take a biopsy – a small sample of tissue to send to the lab for examination under a microscope. If you have a laparoscopy to diagnose your endometriosis, your gynaecologist may remove the endometriosis during that procedure. Or they may recommend having surgery to remove the endometriosis at a later time. See our section on treatment below.

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

You might also be offered an MRI scan. An MRI scan uses magnets and radio waves to produce images of the inside of the body.

Treatment of endometriosis

About one in three women get better on their own over 6 to 12 months. Other women may need to have treatment to reduce their symptoms. Your treatment will depend on factors such as 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. About half of women find that their symptoms come back. 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 for you.

Medicines

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 medicines 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 ‘damp down’ or suppress endometriosis and so lessen your pain. They aren’t suitable for treating endometriosis in women who are trying to become pregnant.

If you’re not trying to get 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 you. These include:

  • progestogens, which can be given orally (tablets), as an injection every three months or in an intrauterine system (‘coil’).
  • gonadotrophin-releasing hormone (GnRH) agonists. These may be given by injection, but may also be given as a nasal spray or in an implant.

Each of these medicines 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 with you which treatment may be best for you.

Surgery

Surgery can remove areas of endometriosis. This can help to improve your chance of getting pregnant if your endometriosis is affecting your fertility, and can also reduce your pain. Surgery for endometriosis is done under a general anaesthetic so you’ll be asleep. Endometriosis can come back after surgery, so you may need to have surgery again in the future.

Laparoscopy (keyhole surgery)

Surgery can often be done by laparoscopy – a type of keyhole surgery. This involves a gynaecologist looking inside your abdomen (tummy) using a narrow, tube-like telescopic camera (laparoscope) inserted through a small cut. They can then remove or destroy any 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. If your gynaecologist recommends this they 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 offer you a hysterectomy. This is a larger operation to remove your womb and sometimes your ovaries. This operation can also be done by keyhole surgery. 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.

Endometriosis is 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 may affect up to a half of those women who have endometriosis.
  • Endometriosis increases your risk of getting ovarian cysts. These can rupture and cause pain and reduced fertility.
  • You may have a slightly increased risk of ovarian cancer if you have endometriosis.

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

FAQ: Can treatment for endometriosis help me get pregnant?

The good news is that around seven out of 10 women with endometriosis will eventually get pregnant without medical help. However, some women with endometriosis do have problems with reduced fertility.

Having hormonal treatment for endometriosis can help ease your pain symptoms (see our treatment section above). However, doctors don’t think it increases your chance of getting pregnant.

There are treatments that can help improve your chance of getting pregnant if you have endometriosis. However, there isn’t yet one, agreed ‘best option’. This is something you should discuss with your gynaecologist. What treatment you may have will depend upon several factors including the type and severity of endometriosis and your preferences.

Having laparoscopic surgery to remove or destroy patches of endometriosis may improve your fertility. This is more likely to help if you have mild endometriosis, rather than moderate to severe disease.

After discussion with your gynaecologist, you may decide to opt for one of the forms of medically-assisted reproduction (assisted conception, fertility treatments). These include intrauterine insemination and in vitro fertilisation (IVF). See our topic on female infertility for more information.

FAQ: I have endometriosis – am I more likely to get cancer?

Endometriosis is a benign condition, which means it isn’t a type of cancer.

However, having endometriosis does seem to slightly increase your chance of getting some types of ovarian cancer. Doctors aren’t sure why this is. So there’s lots of research going on to try and find out more about the link between endometriosis and ovarian cancer.

If you’re concerned about your risk of ovarian cancer, talk to your GP or gynaecologist.

FAQ: Will a hysterectomy cure my endometriosis?

If other treatments haven’t worked, and you’re sure that you don’t want to become pregnant in the future, then a hysterectomy may be an option. This is an operation to remove your uterus (womb).

Your gynaecologist may recommend you have your ovaries removed at the same time, as this gives you a better chance of your symptoms ending. Removing your ovaries removes the hormones they produce. It’s these hormones which cause the areas of endometriosis to swell and bleed.

Having your womb and ovaries removed, along with areas of endometriosis, may make your symptoms go away for good. It doesn’t always work though – some women still have symptoms of endometriosis after the operation.

If you have your ovaries removed, this may cause you to have symptoms similar to the menopause, such as hot flushes and mood changes. Your doctor may recommend that you take hormone replacement therapy (HRT) to deal with these. They’ll discuss with you how soon after your hysterectomy you can start HRT.

For more information about your treatment options, or if you have any questions, speak to your doctor. They’ll explain the options available to you, as well as their benefits and risks.

Details

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  • Other helpful websites Other helpful websites

    Further information

    Sources

    • Endometriosis. BMJ Best Practice. bestpractice.bmj.com, last updated 15 September 2016
    • Endometriosis. Medscape. emedicine.medscape.com, updated 25 April 2016
    • Endometriosis. PatientPlus. patient.info/patientplus, last checked 11 March 2016
    • Endometriosis. NICE Clinical Knowledge Summaries. cks.nice.org.uk, last revised May 2014
    • Fertility: assessment and treatment for people with fertility problems. National Institute for Health and Care Excellence (NICE), 2013. www.nice.org.uk
    • Map of Medicine. Dysmenorrhoea. International View. London: Map of Medicine; 2017 (Issue 2)
    • Dunselman GA, Vermeulen N, Becker C, et al. ESHRE guideline: management of women with endometriosis. Hum Reprod 2014; 29(3):400–12. doi:10.1093/humrep/det457
    • Information for women with endometriosis. Patient version of the ESHRE Guideline on management of women with endometriosis. European Society of Human Reproduction and Embryology. www.eshre.eu, 2014
    • Endometriosis. Royal College of Obstetricians & Gynaecologists. www.rcog.org.uk, published July 2016
    • Ovarian cancer risk factors. Cancer Research UK. www.cancerresearchuk.org, last reviewed 5 January 2015
    • Kim HS, Kim TH, Chung HH, et al. Risk and prognosis of ovarian cancer in women with endometriosis: a meta-analysis. Br J Cancer 2014; 110(7):1878–90. doi:10.1038/bjc.2014.29
    • Endometriosis and pregnancy (and breastfeeding). Endometriosis.org. www.endometriosis.org, accessed 13 July 2017
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    Reviewed by Dr Kristina Routh, Freelance Health Editor, Bupa Health Content Team, July 2017
    Expert reviewer, Miss Shirin Irani, Consultant Gynaecologist
    Next review due July 2020

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