Endometriosis

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Introduction

Endometriosis

Endometriosis is a common condition where tissue that behaves like the lining of the womb (endometrium) is found in other parts of the body. 

It can appear in many different places, including the ovaries, fallopian tubes, inside the tummy, and in or around the bladder or bowel.

Endometriosis mainly affects girls and women of childbearing age. It's less common in women who've been through the menopause.

It's a long-term condition that can have a significant impact on your life, but there are treatments that can help.

This page covers:

Symptoms

When to see your GP

Treatments

Further problems

Coping and support

Causes

Symptoms of endometriosis

The symptoms of endometriosis can vary. Some women are badly affected, while others might not have any noticeable symptoms.

Symptoms can include:

  • period pain that it isn't relieved with painkillers
  • heavy periods - for example, you may need to use lots of tampons or pads (or use them together), or the blood might soak through your clothes
  • pelvic pain - this may just occur around the time of your period or you may have it all the time
  • pain during and after sex
  • pain or discomfort when going to the toilet
  • bleeding from your bottom or blood in your poo
  • feeling tired all the time

For some women, endometriosis can stop them from doing their normal activities, and it may sometimes lead to feelings of depression.

When to see your GP

See your GP if you have symptoms of endometriosis, especially if they're having a big impact on your life.

It may help to write down your symptoms before seeing your doctor. Endometriosis UK has a pain and symptoms diary (PDF, 238kb) you can use.

It can be difficult to diagnose endometriosis because the symptoms can vary considerably, and many other conditions can cause similar symptoms.

If your GP isn't sure what's causing your symptoms, they may refer you to a specialist doctor called a gynaecologist for some further tests.

You'll need to have a laparoscopy to confirm endometriosis. This is where a surgeon passes a thin tube through a small cut in your skin so they can see any patches of endometriosis tissue in your body.

Treatments for endometriosis

There's currently no cure for endometriosis, but there are treatments that can help ease the symptoms.

Treatments include:

Your doctor will discuss the options with you. Sometimes they may suggest not starting treatment immediately to see if your symptoms improve on their own.

Read more about treatments for endometriosis.

Further problems caused by endometriosis

One of the main complications of endometriosis is difficulty getting pregnant or not being able to get pregnant at all (infertility).

Surgery to remove endometriosis tissue can help improve your chances of getting pregnant, although there's no guarantee that you will be able to get pregnant after treatment.

Surgery for endometriosis can also sometimes cause further problems, such as infections, bleeding, or damage to affected organs. If surgery is recommended for you, talk to your surgeon about the possible risks.

Read more about the complications of endometriosis.

Coping with endometriosis

Endometriosis can be a difficult condition to deal with, both physically and emotionally.

As well as support from your doctor, you may find it helpful to contact a support group, such as Endometriosis UK, for information and advice.

In addition to detailed information about endometriosis, Endometriosis UK has a directory of local support groups, a helpline on 0808 808 2227, and an online community for women affected by the condition.

Causes of endometriosis

The cause of endometriosis isn't known.

Several theories have been suggested, including:

  • genetics - the condition tends to run in families, and affects people of certain ethnic groups more than others
  • retrograde menstruation - when some of the womb lining flows up through the fallopian tubes and embeds itself on the organs of the pelvis, rather than leaving the body as a period
  • a problem with the immune system (the body's natural defence against illness and infection)
  • endometrium cells spreading through the body in the bloodstream or lymphatic system (a series of tubes and glands that form part of the immune system)

But none of these theories fully explain why endometriosis occurs. It's likely the condition is caused by a combination of different factors.

Treatment

Treatment

There's no cure for endometriosis and it can be difficult to treat. Treatment aims to ease symptoms so the condition doesn't interfere with your daily life.

Treatment can be given to:

  • relieve pain
  • slow the growth of endometriosis tissue
  • improve fertility
  • stop the condition returning

Deciding which treatment

Your gynaecologist will discuss the treatment options with you and outline the risks and benefits of each.

When deciding which treatment is right for you, there are several things to consider, including:

  • your age
  • whether your main symptom is pain or difficulty getting pregnant
  • whether you want to become pregnant - some treatments may stop you getting pregnant
  • how you feel about surgery
  • whether you've tried any of the treatments before

Treatment may not be necessary if your symptoms are mild, you have no fertility problems, or you're nearing the menopause, when symptoms may get better without treatment.

Endometriosis sometimes gets better by itself, but it can get worse if it's not treated. One option is to keep an eye on symptoms and decide to have treatment if they get worse.

Support from self-help groups, such as Endometriosis UK, can be very useful if you're learning how to manage the condition.

Pain medication

Non-steroidal anti-inflammatories (NSAIDs), such as ibuprofen and naproxen, are usually the preferred painkillers for the pain caused by endometriosis.

This is because they act against the swelling (inflammation) caused by the condition, which may help ease pain and discomfort. It's best to take NSAIDs the day before - or several days before - you expect period pain.

Paracetamol can be used to treat mild pain. It's not usually as effective as NSAIDs, but may be used if these types of drugs cause any side effects, such as feeling sick, vomiting and diarrhoea.

Codeine is a stronger painkiller that's sometimes combined with paracetamol or used alone if other painkillers aren't suitable. But constipation is a common side effect, which may make the symptoms of endometriosis worse.

For more information, see information about pain relief for endometriosis on the Endometriosis UK website.

Hormone treatment

The aim of hormone treatment is to limit or stop the production of oestrogen in your body, as oestrogen encourages endometriosis tissue to grow and shed. Limiting oestrogen can reduce the amount of tissue in the body.

But hormone treatment has no effect on adhesions - "sticky" areas of tissue that can cause organs to fuse together - and can't improve fertility.

Read more about adhesions and other complications of endometriosis.

Some of the main hormone-based treatments for endometriosis include:

Evidence suggests these hormone treatments are equally effective at treating endometriosis, but they have different side effects.

Although most hormone treatments reduce your chance of pregnancy while using them, only the contraceptive pill or patch and LNG-IUS are licensed to be used as contraceptives.

Progestogens and antiprogestogens are used less commonly these days as they often cause unpleasant side effects.

The combined oral contraceptive pill or patch

The combined contraceptive pill and contraceptive patch contain the hormones oestrogen and progestogen. 

They can help relieve milder symptoms, and can be used over long periods of time. They stop eggs being released (ovulation) and make periods lighter and less painful.

These contraceptives can have side effects, but you can try different brands until you find one that suits you.

Your doctor may recommend taking three packs of the pill in a row without a break to minimise the bleeding and improve any symptoms related to the bleeding.

Levonorgestrel-releasing intrauterine system (LNG-IUS)

The Mirena levonorgestrel-releasing intrauterine system (LNG-IUS) is a T-shaped contraceptive device that fits into the womb. It releases a type of progestogen hormone called levonorgestrel.

This hormone prevents the lining of your womb growing quickly, which can help reduce pain and greatly reduces or even stops periods.

The device is put into the womb by a doctor or nurse. Once in place, it can remain effective for up to five years.

Possible side effects of using LNG-IUS include irregular bleeding that may last more than six months, breast tenderness and acne.

Learn more about the IUS.

Gonadotrophin-releasing hormone (GnRH) analogues

GnRH analogues are synthetic hormones that bring on a temporary menopause by reducing the production of oestrogen. They're usually taken as a nasal spray or injection.

Menopause-like side effects of GnRH analogues include hot flushes, vaginal dryness and low libido. Sometimes low doses of hormone replacement therapy (HRT) may be recommended in addition to GnRH analogues to prevent these side effects.

They're only prescribed on a short-term basis - normally a maximum of six months at a time - and your symptoms may return after treatment is stopped.

GnRH analogues aren't licensed as a form of contraception, so you should still use contraception in the first month while taking them until they take full effect.

Examples of GnRH analogues include:

  • buserelin
  • goserelin
  • nafarelin
  • leuprorelin

Progestogens

Progestogens, such as norethisterone, are synthetic hormones that behave like the natural hormone progesterone. They work by preventing the lining of your womb and any endometriosis tissue growing quickly.

But they can have side effects, such as:

  • bloating
  • mood changes
  • irregular bleeding
  • weight gain

Progestogens are usually taken daily in tablet form from days 5-26 of your menstrual cycle, counting the first day of your period as day one.

Progestogen tablets aren't an effective form of contraception, so you'll still need to use contraception while taking them if you don't want to get pregnant.

Antiprogestogens

Also known as testosterone derivatives, antiprogestogens are man-made hormones that work in a similar way to GnRH analogues. They bring on a temporary menopause by decreasing the production of oestrogen.

Side effects of antiprogestogens can include:

  • weight gain
  • acne
  • mood changes
  • the development of masculine features, such as hair growth and a deepening voice

These side effects are often severe and other medicines are often more effective, so antiprogestogens are usually only prescribed as a last resort.

Like GnRH analogues, antiprogestogens are usually only prescribed for a maximum of six months at a time. Examples of antiprogestogens include danazol and gestrinone.

Surgery

Surgery can be used to remove or destroy areas of endometriosis tissue, which can help improve symptoms and fertility. The kind of surgery you have will depend on where the tissue is.

The options are:

  • laparoscopy - the most commonly used technique
  • laparotomy
  • hysterectomy

Any surgical procedure carries risks. It's important to discuss these with your surgeon before undergoing treatment.

Laparoscopy

During laparoscopy, also known as keyhole surgery, small cuts (incisions) are made in your tummy so the endometriosis tissue can be destroyed or cut out.

Large incisions are avoided because the surgeon uses an instrument called a laparoscope. This is a small tube with a light source and a camera, which sends images of the inside of your tummy or pelvis to a television monitor.

During laparoscopy, fine instruments are used to apply heat, a laser, an electric current (diathermy), or a beam of special gas to the patches of tissue to destroy or remove them.

Ovarian cysts, or endometriomas, which are formed as a result of endometriosis, can also be removed using this technique.

The procedure is carried out under general anaesthetic, so you'll be asleep and won't feel any pain as it's carried out.

Although this kind of surgery can relieve your symptoms and has been shown to improve fertility, problems can sometimes recur, especially if some endometriosis tissue is left behind.

Laparotomy

A laparotomy is a more major operation used if your endometriosis is severe and widespread, or if some of your organs have become stuck together as a result of endometriosis.

During the procedure, the surgeon makes a long cut along the bikini line and opens up the area to access the affected organs and remove the endometriosis tissue.

Recovery time for this type of surgery is longer than for keyhole surgery.

Hysterectomy

If keyhole surgery and other treatments haven't worked and you've decided not to have any more children, removal of the womb (a hysterectomy) can be an option.

A hysterectomy is a major operation that will have a significant impact on your body. Deciding to have a hysterectomy is a big decision you should discuss with your GP or gynaecologist.

Hysterectomies can't be reversed and, though unlikely, there's no guarantee the endometriosis symptoms won't return after the operation. If the ovaries are left in place, the endometriosis is more likely to return.

If your ovaries are removed during a hysterectomy, the possibility of needing HRT afterwards should be discussed with you. But it's not clear what course of HRT is best for women who have endometriosis.

For example, oestrogen-only HRT may cause your symptoms to return if any endometriosis patches remain after the operation. This risk is reduced by the use of a combined course of HRT (oestrogen and progesterone), but this can increase your risk of developing breast cancer.

But the risk of breast cancer isn't significantly increased until you've reached the normal age for the menopause. Talk to your doctor about the best treatment for you.

Complications of surgery

All types of surgery carry a risk of complications.

If surgery is recommended for you, speak to your surgeon about the possible risks before agreeing to treatment.

Read about the complications of endometriosis for more information about the risks of surgery.

Complications

Complications

Women with endometriosis can sometimes experience a number of complications.

Fertility problems

Endometriosis can damage the fallopian tubes or ovaries, causing fertility problems. But it's estimated up to 70% of women with mild to moderate endometriosis will eventually be able to get pregnant without treatment.

Medication won't improve fertility. Surgery to remove visible patches of endometriosis tissue can help, but there's no guarantee this will help you get pregnant.

If you're having difficulty getting pregnant, in vitro fertilisation (IVF) may be an option, although women with endometriosis tend to have a lower chance of getting pregnant with IVF than usual.

Read more about infertility treatments.

Adhesions and ovarian cysts

Some women will develop:

  • adhesions - "sticky" areas of endometriosis tissue that can join organs together
  • ovarian cysts - fluid-filled cysts in the ovaries that can sometimes become very large and painful

These can both occur if the endometriosis tissue is in or near the ovaries. They can be treated with surgery, but may come back in the future if the endometriosis returns.

Read information about treating ovarian cysts.

Surgery complications

Like all types of surgery, surgery for endometriosis carries a risk of complications.

The more common complications aren't usually serious and can include:

  • a wound infection
  • minor bleeding
  • bruising around the wound

Less common but more serious risks include:

Before having surgery, talk to your surgeon about the benefits and possible risks involved.

Bladder and bowel problems

Endometriosis affecting the bladder or bowel can be difficult to treat and may require major surgery.

For example, surgery for endometriosis in the bladder may involve cutting away part of the bladder, and a tube called a urinary catheter may be placed in your bladder to help you pee in the days after surgery.

In a few cases, you may need to pee into a bag attached to a small hole made in your tummy. This is called a urostomy and it's usually temporary.

Treatment for endometriosis in the bowel may involve removing a section of bowel. Some women need to have a temporary colostomy while their bowel heals. This is where the bowel is diverted through a hole in the tummy and waste products are collected in a bag.

Endometriosis UK has more information about endometriosis and the bladder and endometriosis and the bowel