Overview
Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes.
Endometriosis can affect women of any age including teenagers.
It's a long-term condition that can have a significant impact on your life, but there are treatments that can help.
Symptoms of endometriosis
The symptoms of endometriosis can vary. Some women are badly affected, while others might not have any noticeable symptoms.
The main symptoms of endometriosis are:
- pain in your lower tummy or back (pelvic pain) - usually worse during your period
- period pain that stops you doing normal activities
- pain during or after sex
- pain when peeing or pooing during your period
- feeling sick, constipation, diarrhoea, or blood in your pee during your period
- difficulty getting pregnant
You may also have heavy periods. You might use lots of pads or tampons, or you may bleed through your clothes.
For some women, endometriosis can have a big impact on their life and may sometimes lead to feelings of depression.
You can use the Endometriosis Cymru online symptom reporting tool to help you track your symptoms and treatments.
When to see a GP
See a 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.
Your GP will ask about your symptoms, and may ask to examine your tummy and vagina.
They may recommend treatments if they think you have endometriosis.
If these do not help, they might refer you to a specialist called a gynaecologist for some further tests, such as an ultrasound scan or laparoscopy.
A laparoscopy is where a surgeon passes a thin tube through a small cut in your tummy so they can see any patches of endometriosis tissue.
This is the only way to be certain you have endometriosis.
Treatments for endometriosis
There's currently no cure for endometriosis, but there are treatments that can help ease the symptoms.
Treatments include:
- painkillers – such as ibuprofen and paracetamol
- hormone medicines and contraceptives – including the combined pill, the contraceptive patch, an intrauterine system (IUS), and contraceptive implant, and medicines called gonadotrophin-releasing hormone (GnRH) analogues
- surgery to cut away patches of endometriosis tissue
- surgery to remove part or all of the organs affected by endometriosis, such as surgery to remove part of your colon, or apendix or the womb (hysterectomy)
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.
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.
Living 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
- 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.
Find out more about endometriosis on the endometriosis cymru website.
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
Anti-inflammatories (such as ibuprofen) or paracetamol may be tried to see if they help reduce your pain. They can be used together for more severe pain.
These painkillers are available to buy from pharmacies and don't usually cause many side effects.
Tell your doctor if you've been taking painkillers for a few months and you're still in pain.
For more information, read 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.
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.
You can discuss the different options and their side effects.
Most hormone treatments reduce your chance of pregnancy while using them, but not all of them are licensed as contraceptives.
None of the hormone treatments have a permanent effect on your fertility.
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.
Progestogens
Progestogens 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 used to treat endometriosis include:
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 main options are:
- laparoscopy – the most commonly used technique
- 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, 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 will not feel any pain as it's carried out.
Although this kind of surgery can relieve your symptoms and sometimes help improve fertility, problems can recur, especially if some endometriosis tissue is left behind.
You may need to take hormone treatment before and after surgery to help avoid this.
Hysterectomy
If keyhole surgery and other treatments have not worked and you have 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 cannot be reversed and, though unlikely, endometriosis symptoms could 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 can increase your risk of developing breast cancer.
But the risk of breast cancer is not significantly increased until you have 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.
Gonadotrophin-releasing hormone (GnRH) analogues
GnRH analogues are synthetic hormones that bring on a temporary menopause by reducing the production of oestrogen.
They're sometimes given before surgery to help reduce the amount of endometrial tissue. You would normally take them for 3 months before your surgery.
GnRH analogues are not licensed as a form of contraception, so you should still use contraception while using them.
Complementary therapies
There's no evidence that traditional Chinese medicine or other Chinese herbal medicines or supplements can help treat endometriosis.
Complications
Women with endometriosis can sometimes experience a number of complications.
Fertility problems
Endometriosis can cause fertility problems. This is not fully understood, but is thought to be because of damage to the fallopian tubes or ovaries.
But not all women with endometriosis will have problems and will eventually be able to get pregnant without treatment.
Medication will not improve fertility. Surgery to remove patches of endometriosis tissue can sometimes help, but there's no guarantee this will help you get pregnant.
If you're having difficulty getting pregnant, infertility treatments, such as in vitro fertilisation (IVF), may be an option,
But women with moderate to severe endometriosis tend to have a lower chance of getting pregnant with IVF than usual.
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.
Surgery complications
Like all types of surgery, surgery for endometriosis carries a risk of complications.
The more common complications are not usually serious and can include:
- a wound infection
- minor bleeding
- bruising around the wound
Less common, but more serious, risks include:
- damage to an organ, such as a hole accidentally being made in the womb, bladder or bowel
- severe bleeding inside the tummy
- a blood clot in the leg (deep vein thrombosis) or lungs (pulmonary embolism)
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.
You may be referred to a specialist endometriosis service if your bladder or bowel is affected.
Surgery for endometriosis that's around or inside the bladder may involve cutting away part of the bladder.
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 that's around or inside 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.