What is endometriosis?

Endometriosis can affect women of any age, including teenagers.

It happens when tissue similar to the lining of the womb grows in other places, such as in and around the womb.

Endometriosis can also be found on the fallopian tubes, in the ovaries or on the bowel, or more rarely in places like the lung. This tissue responds to hormones that regulate periods and is associated with inflammation. This means endometriosis can cause chronic pain, heavy periods and other symptoms.

Endometriosis is common and affects 1.5 million women in the UK.

It’s a long-term condition that can have a big impact on your life. It can be made more manageable with the right treatment for you.

What causes endometriosis?

We do not yet know the cause of endometriosis. The most common theory is that cells from the lining of the womb are shed and move through the fallopian tubes during a period and attach to the inside of the abdomen. This then develops into endometriosis lesions.

How your immune system works may also play a part. We know that for some people there is a genetic link, although there isn’t one particular gene that causes endometriosis.

What are the symptoms of endometriosis?

Some women can be badly affected by symptoms. Others may have no symptoms.

The common symptoms of endometriosis are:

• pain in your lower tummy or back – can be worse during your period
• period pain that stops you doing your normal activities
• pain during or after sex
• pain when peeing or pooing, particularly during your period
• feeling sick, bloated, constipation, diarrhoea, or blood in your pee or poo during your period
• difficulty getting pregnant
• heavy periods
• persistent tiredness and exhaustion

Symptoms of endometriosis can overlap with those of ​​adenomyosis, pelvic inflammatory disease and ​​fibroids. But these conditions aren’t the same and it’s possible to have one or more of these conditions.

Getting a diagnosis of endometriosis can take a long time. This is because the symptoms are like lots of other common conditions.

How can I get a diagnosis of endometriosis? 

See your GP if your symptoms are having a big impact on your life, like missing work, school or activities that you enjoy. Or if your pain is not controlled by painkillers.

It can be  helpful to write down your symptoms before seeing your doctor and how they relate to your periods. The charity Endometriosis UK has a pain and symptoms diary you can use.

Your GP will ask you about your symptoms and may examine your tummy and vagina. They might recommend some treatments. The GP might send you to see a specialist (gynaecologist) for tests or arrange an ultrasound scan.

The main way to be certain you have endometriosis is by a laparoscopy. This is an operation where a thin camera (called a laparoscope) is passed through a small cut in your tummy. Sometimes it is possible to remove the areas of endometriosis at the same time during this procedure.

After the laparoscopy, the doctor will be able to tell you if you have endometriosis. It’s also possible that no endometriosis is seen at laparoscopy. Your doctor will discuss the findings and any further treatment.

An ultrasound and MRI scan may be suggested. But it’s important to note that a normal result from these scans does not mean you don’t have endometriosis.

Even though it can take a long time to diagnose endometriosis, it is still important to see your GP. You could print this page out and take it with you.

What are the treatments for endometriosis?

There’s no cure for endometriosis, but there are treatments to help your symptoms.

These include:

• over the counter painkillers, such as ibuprofen and paracetamol
• prescribed painkillers, such as mefenamic acid
• hormone medicines and contraceptives, such as the pill or hormone containing coil
• surgery to remove the endometriosis tissue
• surgery to remove part or all of the organs affected, such as part of your bowel, your appendix or womb (hysterectomy).

A hysterectomy is not a cure for endometriosis, but, for some a hysterectomy might relieve some symptoms.

Like all surgery, surgery for endometriosis does carry some risks of complications and not all people having surgery will have improvement in their symptoms. The NHS has more information. Talk to your doctor about this.

Endometriosis can affect your bowel and the bladder. If you have this type of endometriosis that needs specialist treatment, you might be referred to a BSGE accredited endometriosis specialist centre.

It’s ok to ask questions about your care so you can get the information you need . You could ask about your treatment options and the benefits and risks of each. This can help you decide what’s right for you.

What can I do to help myself? 

Pain, lack of energy and depression caused by endometriosis can make life difficult. Speak to your GP or nurse or ask for a referral for more support to help you manage these symptoms.

Hot and cold therapy may  help improve some types of pain. This is where heat pads and ice packs relax your muscles or numb pain. A heated pad or a hot water bottle or TENS machine bottle may also help ease pain.

Exercising, eating a balanced diet, drinking less alcohol and stopping smoking can all help your general health which may make it easier to manage your symptoms. Some people have found that some of the dietary changes suggested to people with IBS can help with their symptoms. If you do want to make changes to the foods you eat, it’s important that you have a balanced diet and get the right nutrients.

Alternative therapies and lifestyle changes can help you to manage symptoms. Certain types of exercise, particularly stretching, has shown to improve pelvic pain. You might find yoga, mindfulness and meditation helpful.

What are the complications of endometriosis? 

Not all women with endometriosis have fertility problems. But some may struggle to get pregnant. Surgery to remove endometriosis tissue might help or in other cases fertility treatment such as IVF might be more appropriate.

If you’re having problems getting pregnant, your doctor may recommend fertility treatments.

Some women with endometriosis develop:

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

You may need surgery to treat these.

Getting more support 

• Contacting a support group can help. Endometriosis UK has a list of local support groups, a helpline and an online community.
• There is lots more information about the condition on the NHS website
• The Royal College of Obstetrics and Gynaecology produce a helpful leaflet.
• The National Institute for Health and Care Excellence (NICE) has published guidance on diagnosis and management of endometriosis.
• NICE published a patient decision aid on hormone treatment for endometriosis symptoms.

Watch our webinar on endometriosis

Read experiences of endometriosis