Endometriosis explained

Across the UK, endometriosis affects 10% of all people with uteruses. It has a major impact on their lives.

Endometriosis, sometimes called endo, is a painful condition where tissue similar to the lining of the womb grows in other parts of the body. Often this happens around the ovaries, fallopian tubes and other parts of the pelvic region. Originally, it was thought that it could only affect these areas. But now we know that it can grow on every organ in the body.

It can affect anyone who has a womb, at any age, no matter their ethnicity or background. Endometriosis is a long-term condition. And it can take some time to get diagnosed and find the right treatment.

Why does endo cause pain and health problems?

The tissue that lines the womb is called the endometrium. This tissue works to prepare the womb for pregnancy as a part of the menstrual cycle. It gets thicker at the same time that your body releases an egg (ovulation).

Then during your period, this tissue breaks down and leaves the body. The endometrium tissue that has grown outside of the womb does the same thing. But, because it’s in a place it should not be,  it has nowhere to go. It cannot easily leave the body, so it causes pain, inflammation and more tissue starts to build up.

Endometriosis is an illness that causes long-term (chronic) pain. It can also cause problems with fertility and pregnancy.

People living with endometriosis are more likely to be infertile, have miscarriages or experience complicated births. It does not only affect the person who has the condition. It can affect their family and people close to them as well.

What are the symptoms of endometriosis?

People who have endometriosis can experience: 

  • pain in the stomach, pelvic area and lower back that often gets worse during periods and ovulation

  • agonising and heavy periods that last a long time. Often with bleeding that soaks through your clothing or means you need to use multiple pads or tampons in a hour

  • stomach problems like diarrhoea, constipation, vomiting and intense cramping during your period. It can be painful going to the toilet, and there might be blood in your pee

This pain and the blood loss caused by endometriosis can have an impact on people’s daily lives. It can stop them from taking part in everyday activities. And they might also experience: 

  • sleepless, interrupted nights because of pain and vomiting

  • anaemia and chronic fatigue (intense tiredness and lack of energy) because of blood loss and disrupted sleep

  • pain during sex. This can lead to a limited sex life due to how painful it is

  • trips to A&E because the pain is so intense it cannot be managed at home 

  • needing to take time off from school, college or work because of their symptoms or for doctor's visits. This can be especially difficult because other people often do not understand the condition. It can feel uncomfortable or awkward talking to people about it

  • difficulty making plans or attending events like weddings or holidays, because the symptoms are not predictable

  • spending lots of money on pain relief and sanitary products if they’re not able to get a prescription

  • anxiety and depression because of all the above and its negative effect on life

Diagnosing endometriosis

It can take years of getting the wrong diagnosis and the wrong treatment before endometriosis is diagnosed correctly. It actually takes an average of 8 years for someone to be diagnosed with endometriosis.

This can happen because endometriosis does not always show in examinations or scans. People often need to see a specialist and have laparoscopic, or keyhole, surgery before the endometrium tissue is seen.

Often the symptoms are not taken seriously or get confused with signs of a different illness. Sufferers can be told they’re describing normal period pains or that they have IBS.

People also get told that contraceptives, like the pill or the IUS coil, will help them. These can help make the symptoms of endo easier to live with but aren’t a long-term solution. Or they’re told to take paracetamol and get some rest when they really need a robust plan for managing their pain.

What treatment is available?

Endometriosis can be a difficult condition to treat. Most treatment options are focused on reducing the symptoms so it’s easier to do daily activities. Most people need a mix of treatments to manage the condition. 

Commons treatments include

  • pain relief. This can include a range of methods from heat packs and ibuprofen to physiotherapy

  • hormonal treatment, like using hormonal contraceptives, which can reduce the amount of tissue building up in the body

  • laparoscopic surgery to remove the damaged tissue. This is also known as keyhole surgery because it just uses small cuts in the stomach to remove the tissue and avoid large surgical wounds. Not all endometriosis tissue can be removed this way.

  • surgical removal of the womb and ovaries (hysterectomy). You might have heard of some celebrity endo patients who’ve taken this route, like Lena Durham or Amy Schumer, because their symptoms were not responding well to other treatments

What to do if you think you have endometriosis

Speak to your GP. Keep a diary of your symptoms. This will help your GP understand your symptoms, offer the appropriate treatment and make the correct referrals. Download a pain and symptoms diary template from the Endometriosis UK website.

If the treatment they offer does not help, they may refer you to a specialist. If they do not do this, you can ask for a referral to a specialist or ask for a second opinion. You should be referred to a gynaecologist who can take scans and carry out further tests. 

Endometriosis Awareness Month 

Every March is Endometriosis Awareness Month, organised by the charity Endometriosis UK.

They urge anybody who has painful periods and pelvic pain that interferes with day-to-day activities to take action and contact a doctor. This could be their GP or their local sexual health clinic. Don’t put it off, and demand to be taken seriously.

Find out more

Written by Helen Burkitt. Senior Sexual Health and Contraception Nurse
Last updated at: 20 April 2023