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 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 fertility problems. 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.
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 over-the-counter painkillers, such as ibuprofen.
Other typical symptoms include:
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 menopause.
Some women have no symptoms. You may only find out that you’ve got endometriosis after having tests for other conditions, such as infertility.
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 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 laparoscopy. You have this under general anaesthetic 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 (MRI) scan. This can help to diagnose endometriosis that is deep inside your pelvis, or affecting your bladder or bowel.
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.
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 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:
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.
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.
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.
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.
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 hormone replacement therapy (HRT). Talk to your gynaecologist about the pros and cons of this type of surgery, and see our FAQ on hysterectomy.
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.
Some complications of endometriosis are listed below.
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 ovarian cancer. 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.
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.
There are treatments that can help improve your chance of getting pregnant if you have endometriosis, but there isn’t one agreed ‘best option’. This is something you should discuss with your gynaecologist. Any treatment you have will depend upon several factors, including the type and severity of endometriosis and your preferences.
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 or fertility treatment). These include intrauterine insemination and in vitro fertilisation (IVF).
If other treatments haven’t worked, and you’re sure that you don’t want to become pregnant in the future, then hysterectomy may be an option. This is an operation to remove your uterus (womb).
Your gynaecologist will most probably recommend removing your ovaries at the same time, as this increases the chance of curing your symptoms. Removing your ovaries stops the production of the hormones they produce. It’s these hormones which cause the areas of endometriosis to swell and bleed. Having your womb and ovaries removed doesn’t always work – some women still have symptoms after the operation.
If you have your ovaries removed, this is likely to cause menopausal symptoms , such as hot flushes and mood changes. Your doctor may recommend hormone replacement therapy (HRT) to deal with these and help keep your bones healthy. 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.
www.endometriosis-uk.org
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