Endometriosis

Endometriosis is a long-term (chronic) condition where tissue similar to the lining of the womb is found elsewhere in the body. It’s very common, affecting around 1 in 10 women or those assigned female at birth. For some people, it can have a significant impact on their lives.

Symptoms of endometriosis

Symptoms can be different from person to person and month to month. Some people have no symptoms at all.

Speak to your doctor if:

You’re experiencing:

  • pain in the lower stomach, pelvis, lower back or legs
  • painful periods which affect your day to day life – for example, you can’t go to school or work or take part in activities that you enjoy
  • pain during ovulation
  • heavy or long lasting periods
  • pain during and after sex
  • pain or bleeding when going to the toilet (pain before or after peeing or pooing)
  • bleeding from your back passage (rectum)
  • blood in your poo (usually at the same time as your period)
  • bloating
  • persistent exhaustion and tiredness
  • difficulty getting pregnant

These symptoms may be endometriosis, but could also be other health conditions.

Endometriosis: a hidden condition

What causes endometriosis?

The exact cause of endometriosis is unknown. It’s sometimes believed to be genetic. That means if someone in your family has the condition, it’s more likely you may have it too.

Diagnosing endometriosis

It can be difficult to diagnose endometriosis. Symptoms can vary a lot and many other conditions can cause similar symptoms.

If you think you have symptoms of endometriosis, speak to your doctor. Share as much information as possible during your first appointment. This’ll hopefully help speed up your diagnosis.

It can be helpful to keep a note of your period dates (PDF, 238KB) and symptoms using a calendar, a diary or an app. You can discuss this with your doctor to help them understand what you’re experiencing.

You should let the doctor know if you have:

  • pain during your period, or at any other times of the month, and where you experience this pain
  • ever experienced pain or bleeding when you pee or poo, and if this is worse during your period

You should also give the doctor details about the pattern of your periods including:

  • the first day of your last period (when it started)
  • how many days your period usually lasts
  • what was the shortest time between your periods (from the first day of one period to the first day of the next)
  • what was the longest time between your periods (from the first day of one period to the first day of the next)

You should also let them know:

  • how you describe your period (light, medium, heavy or very heavy)
  • if you are over 25, when you had your last smear test
  • what treatments you have tried before to manage your symptoms

When you see your doctor about your symptoms, they’ll carry out what is called a pelvic examination. They will look at your vulva, vagina and cervix (the opening between the vagina and the womb) using a speculum (medical instrument). The doctor may then do an internal examination in the vagina to feel for tenderness and masses around the ovaries and womb. Sometimes other tests might be needed, such as a pelvic ultrasound scan. Your doctor will discuss this with you and you can ask any questions that you might have.

As this is an intimate examination, the doctor who performs it will have another person (chaperone) present. You can ask for a female doctor to carry it out.

If symptoms continue, your doctor may refer you to a gynaecologist.

Laparoscopy

The main way to confirm endometriosis is a laparoscopy. A laparoscopy is an operation to insert a camera (a laparoscope) into the pelvis through a small cut near the belly button. This is done under a general anaesthetic.

Sometimes it’s possible to remove some endometriosis tissue at the same time. This will be sent to the laboratory to confirm whether it is endometriosis. 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.

Not everyone with endometriosis needs to have a laparoscopy if their symptoms can be managed.

Get further information about laparoscopy in the recovering well patient information leaflet.

Treatment for endometriosis

There is no cure for endometriosis. Treatments can help to control or improve your symptoms.

Heat and comfort

A hot water bottle or hot bath may help to provide comfort and help you to feel a bit better.

Pain relief

Paracetamol and non-steroidal anti-inflammatories (NSAIDs), such as ibuprofen and naproxen, can help reduce your pain.

Hormone treatment

Hormone treatments work by stopping the ovaries (part of the female reproductive system) producing oestrogen (female sex hormone) which is thought to stimulate the endometriosis.

Hormone treatments include:

GnRH analogues also reduce the production of oestrogen. This puts your body in temporary menopausal-like state. They are sometimes used if other hormonal treatments haven’t helped to manage symptoms. It’s recommended that hormone replacement therapy (HRT) is started at the same time to reduce side effects of this treatment.

GnRH analogues aren’t a contraceptive. You should use non-hormonal contraception (like a condom or diaphragm) when you have sex to avoid getting pregnant.

If you’re thinking about planning a pregnancy, speak to your doctor about your treatment first so you can decide what’s best for you.

Surgery

Some people will have surgery to destroy or remove areas of endometriosis. Not everyone who has endometriosis will need or want surgery.

For some people surgery does not improve their symptoms. For others, the endometriosis may grow back so they may need further surgery. Your doctor will discuss this with you and you can ask any questions that you might have.

Laparoscopic surgery

Sometimes it’s possible to remove some endometriosis tissue at the same time as diagnosis during a laparoscopy. Your doctor will discuss the findings and any further treatment afterwards.

If you have a complex type of endometriosis that needs specialist treatment, you might be referred to an endometriosis centre. These are in Edinburgh, Glasgow and Aberdeen. You’d usually be referred by a consultant gynaecologist. When you’re seen in the specialist centre, they’ll talk more with you about what options might be right for you.

Not everyone with endometriosis will need laparoscopic surgery. Your doctor will discuss your treatment options so you can decide what’s best for you.

Further information about endometriosis treatment

Hysterectomy

A hysterectomy (removal of the womb) is not a cure for endometriosis because the condition exists ‘outside the womb’.

For some people, a hysterectomy might relieve some symptoms, like heavy periods or if they also have adenomyosis. It may be an option if hormonal treatments or surgery have not helped symptoms and you don’t want to become pregnant.

You may want to trial a GnRH analogue before having a hysterectomy to help you decide.

If you choose to have a hysterectomy, you’ll need to decide whether to have your ovaries removed at the same time. Removing the ovaries will put you into menopause. Depending on your age and other medical conditions, your doctor may recommend HRT.

Your doctor will discuss your treatment options so you can decide what’s best for you.

Adhesions and ovarian cysts

Endometriosis can also cause:

  • adhesions – scar tissue that can fuse organs together
  • ovarian cysts – fluid-filled cysts in the ovaries that can sometimes become very large and painful

Both of these complications can be treated with surgery but may come back if the endometriosis returns.

Read information about treating ovarian cysts

Endometriosis and fertility

Many people with endometriosis are able to get pregnant naturally. However, some women with endometriosis can find it difficult to get pregnant.

If you’re having difficulty getting pregnant, your doctor may suggest extra support or treatments. Your doctor will discuss these with you and you can ask any questions that you might have.

Support groups

Sometimes it can be hard to talk about endometriosis and the symptoms you’re experiencing. Hearing about other people’s experiences with endometriosis can help. There might be peer support groups near you or other local groups where you can hear other women’s stories, and share your own.

Living with endometriosis

Last updated:
07 March 2023