Endometriosis

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 of those who menstruate. For some people, it can have a significant impact on their physical health, emotional wellbeing, and daily routine.

What are the symptoms?

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 abdomen (tummy), 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 day to day activities that you enjoy
• pain during ovulation
• heavy or prolonged (long lasting) periods
• spotting or bleeding between 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)
• persistent exhaustion and tiredness (fatigue)
• difficulty getting pregnant

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

Causes

The exact cause of endometriosis is not known but it is sometimes believed to be genetic. That means, if someone in your family has the condition, it’s more likely you may have it too.

Diagnosis

It can be difficult to diagnose endometriosis because symptoms can vary a lot and many other conditions can cause similar symptoms. If you think you have symptoms of endometriosis, it’s important that you 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 and symptoms using a calendar, a diary or an app. You can then discuss this with your doctor to give then a better understanding of what you are experiencing.

If you’re seeing your doctor, there are some useful pieces of information to think about beforehand:

• 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)
• how often you need to change your period products on a heavy day
• if you are over 25, when you had your last smear test

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). Sometimes other tests might be needed. 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 there isn’t a female doctor available, you can ask if there’s a female health professional who could carry out the examination.

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

Laparoscopy

The only way to confirm endometriosis is by a laparoscopy. This is an operation in which a camera (a laparoscope) is inserted into the pelvis via a small cut near the belly button. Sometimes it’s possible to remove some endometrial tissue at the same time. After the laparoscopy, the doctor will be able to tell you if you have endometriosis. This is known as a ‘confirmed diagnosis’. It’s also possible that no endometriosis is seen at laparoscopy. Your doctor will discuss the findings and any further treatment after laparoscopy.

Not everyone with endometriosis will need a laparoscopy if the symptoms can be managed. Your doctor will discuss your treatment options with you so you can decide what’s best for you.

If you have a type of endometriosis that needs additional treatment, you might be referred to a specialist centre. These are located in Edinburgh, Glasgow and Aberdeen. Your doctor will discuss the best option for you.

Whether you’re having, or have had a laparoscopy, you can access the Recovering well patient information leaflet for more information.

Managing endometriosis

There is no cure for endometriosis but there are treatments that 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 treatment can be used to help thin the womb lining, causing periods to become shorter and lighter easing the symptoms of endometriosis such as heavy menstrual bleeding

Hormone treatments include:

• contraceptive pill (‘the pill’)
• contraceptive patch
• contraceptive injection
• intrauterine system (IUS)

Surgery

Some people will have surgery to help treat or remove areas of endometriosis. Not everyone who has endometriosis will need surgery. It depends on where in the body the endometriosis is and how much.

Even after surgery, the endometriosis may grow back so some people may need further surgery. Your doctor will discuss this with you and you can ask any questions that you might have.

Laparoscopy

The only definitive way to confirm or exclude endometriosis is by a laparoscopy. This is called a ‘confirmed diagnosis’. A laparoscopy is a procedure where a camera (a laparoscope) is inserted into the pelvis via a small cut near the belly button. The doctor will discuss with you any findings and any course of treatment. Sometimes it is also possible to remove some endometrial tissue during the laparoscopy.

If you have a more complex type of endometriosis that needs additional treatment, you might be referred to a specialist centre. These are located in Edinburgh, Glasgow and Aberdeen and your doctor will discuss the best option for you.

However, not everyone with endometriosis will need a laparoscopy. Your doctor will discuss your treatment options so you can decide what’s best for you.

Laparotomy

During a laparotomy, the surgeon makes a cut in the tummy so that endometriosis can be removed.

Further information about endometriosis treatment

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, more severe cases of endometriosis can cause scar tissue (adhesions) making it more difficult to get pregnant.

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

Additional help and support

Sometimes it can feel hard to talk about endometriosis and the symptoms you’re experiencing. Hearing from other women in Scotland, discussing their experiences with endometriosis within online support networks or in real life can really 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.