Your guide to endometriosis

What is endometriosis?

Endometriosis is a long-term condition that often causes severe pain. It can affect women of any age, and is believed to affect 10-15% of women and those assigned female at birth. It is disorder in which tissue similar to that which makes up the lining of the womb (the endometrium) begins to grow in other parts of the body. This endometrial tissue is most commonly found on:

• Ovaries
• Fallopian tubes
• The tissues that hold the womb (uterus) in place

However, for some people endometriosis becomes much more widespread. It can affect various organs inside your pelvis — for example your bladder or bowel — causing a variety of problems.

Because this tissue is the same as the cells that line the womb, it reacts in a similar way during the menstrual cycle: it thickens, then breaks down and bleeds. However, this blood does not have a way of leaving the body, so it becomes trapped, leading to inflammation and pain. Surrounding tissue can also become irritated, which may lead to scar tissue.

There is no cure for endometriosis. However, there are a range of treatments that can help you to manage the symptoms and endometriosis pain.

What causes endometriosis?

At present, the cause of endometriosis is not known. There are a range of theories that suggest possible causes. These include:

• Genetics: It may be passed down from mother to daughter, and it affects certain ethnic groups more than others
• Retrograde menstruation: Part of the womb lining flows up through the fallopian tubes and embeds itself on the organs in the pelvis
• Problems with the immune system: The body’s natural defence against infection fails to fight off endometriosis
• Lymphatic or circulatory spread: Endometrial cells are thought to travel round the body through the lymphatic system or in the bloodstream
• Environmental causes: Toxins in the environment may affect the body, causing endometriosis

However, none of these theories fully explain why people develop endometriosis.

What are the symptoms of endometriosis?

Endometriosis symptoms can vary. They range from very mild symptoms that are barely noticeable to severe pelvic pain. The main symptoms include:

• Painful periods
• Pain in the lower abdomen before and during menstruation
• Heavy menstrual bleeding or bleeding between periods
• Pain during or after sexual intercourse
• Pain during bowels movements or urination
• Feeling sick, constipation, diarrhoea, or blood in your urine during your period
• Difficulty getting pregnant

Endometriosis can have a huge impact on your quality of life, which can affect your mental health and leave you with feelings of depression.

• Discover the link between chronic pain and depression

How do you diagnose endometriosis?

If you have signs of endometriosis, you should see your doctor as soon as possible, particularly if they are having an impact on your life. Endometriosis diagnosis can be difficult and your doctor may seek to rule out other conditions that cause similar symptoms first.

During the examination, the doctor will ask you about your symptoms and may perform a pelvic examination. They may refer you to a gynaecologist for some further tests, including:

• Ultrasound scan: This may be a transvaginal ultrasound or an abdominal ultrasound. Both can help your doctor identify cysts that are associated with endometriosis
• Laparoscopy: This is a surgical procedure that allows the surgeon to look inside your body using an instrument called a laparoscope. It allows the surgeon to identify endometriosis tissue and is the only way to be certain that endometriosis is causing the symptoms

What are the complications from endometriosis?

Endometriosis can have an impact on your ability to become pregnant, although it is not fully understood why it does affect your fertility. And not all women with the condition will have difficulties becoming pregnant.

Certain treatments for endometriosis may improve your chance of becoming pregnant, but there is no guarantee.

If the endometriosis occurs in or near the ovaries then some women may develop adhesions. These are areas where endometriosis tissue has joined different organs together.

Sometimes ovarian cysts may develop. These are fluid-filled cysts that grow in the ovaries. If they grow to a large size then they can become very painful.

Endometriosis can also affect the bladder or bowel. You doctor may refer you to a specialist if these two organs are affected. In both cases, your doctor may recommend surgery to treat these conditions.

Endometriosis can be a difficult condition to deal with, both physically and emotionally, so it is advisable to seek out help from a support group.

What are endometriosis treatments?

The condition can be difficult to treat because there is no cure for it. The treatments available are aimed at easing the symptoms, so you can lead a normal life. Your doctor or gynaecologist will discuss the different treatment options with you.

The first course of action is to treat the pain. Anti-inflammatories, such as paracetamol or ibuprofen, can be taken to see if they reduce pain.

Your doctor may suggest hormone treatment to limit or stop your body from producing oestrogen. This can reduce the amount of endometriosis tissue that the body produces, which can reduce some of the symptoms.

The main hormone treatments include:

• The combined oral contraceptive pill (birth control pill)
• Progestogens, such as the intrauterine system (IUS), the contraceptive injection, the implant and progestogen pills

Hormone treatments can help relieve the milder symptoms associated with endometriosis. The main benefit is that they can be used over long periods of time.

Hormone treatments do carry some side effects, including:

• Bloating
• Mood changes
• Irregular bleeding
• Weight gain

However, the main side effect of hormone treatments is that they can reduce your chance of becoming pregnant. 

Surgery is also an option to treat the symptoms. It can be used to remove the tissue. There are two types of endometriosis surgery - a laparoscopy and a hysterectomy.

Laparoscopy

A laparoscopy, which is more commonly known as keyhole surgery, involves making a small cut into the abdomen. This allows the surgeon to insert a device called a laparoscope. This is a small flexible tube that contains a camera, which sends images to a monitor.

Then using a variety of tools, the surgeon can either destroy or remove the endometriosis tissue. The procedure is carried out under general anaesthetic.

Laparoscopic surgery is the most common surgical procedure used to treat endometriosis symptoms.

Hysterectomy

The other surgical option is a hysterectomy, which is a major operation that will have a significant impact on your body.

During this surgical procedure, the uterus is removed. You will only be offered this option if other treatments have not worked and you have decided not to have any more children.

Hysterectomies cannot be reversed and, though unlikely, endometriosis symptoms could return after the operation.

Get help for endometriosis

A consultation with an experienced gynaecologist is often the quickest and simplest way to resolve your problem. They will be able to diagnose the cause of your pain and talk with you about the best treatment options for your specific situation.

To arrange an initial consultation with one of our gynaecologists, call or book online to find an endometriosis specialist near you. 

If you would like to learn more about endometriosis, download our Women's Health Matters report and our Endometriosis Matters report.