Endometriosis information for patients

About endometriosis

Endometriosis is a chronic inflammatory condition driven by the hormones oestrogen and progesterone.

In women with endometriosis, cells similar to those of the womb lining (the endometrium) are found in other parts of the body, most commonly in the pelvis (e.g. on the lining of the wall of the pelvis, in the ovaries, fallopian tubes, bladder, bowel or ligaments supporting the womb). 

These cells undergo cyclical changes (related to the menstrual cycle), where patches of endometriosis thicken and shed but with no way for them to leave the body. This causes inflammation and scar tissue to form, which can lead to pain and discomfort.

Endometriosis is not an infection and it is not contagious. Endometriosis is not cancer.

How common is endometriosis?

Endometriosis affects as many as one in ten women of reproductive age, many of whom will have no symptoms. This is an estimated two million women in the UK. It can affect women from every social group and ethnicity.

What are the symptoms?

• Pelvic pain which is cyclical (related to the menstrual cycle) or non-cyclical (unrelated)
• Excessive pain before/during/after periods
• Pain during sex
• Fertility problems
• Persistent tiredness
• Pain when urinating
• Abnormal bleeding
• Pain with bowel movements

Endometriosis can vary in severity. Some women experience few or no symptoms; other women suffer with many effects. It can affect many aspects of a woman’s life including her general physical health, emotional wellbeing and daily routine.

Types of endometriosis

There are three types of endometriosis:

1. Ovarian endometriosis: This causes ovarian cysts called endometrioma. The cyst is filled with old blood and because of the colour, the cysts are often referred to as ‘chocolate cysts’.

2. Deep endometriosis: The nodules of endometriosis implant at least 5mm below the peritoneum. Structures affected can include the uterosacral ligaments (ligaments supporting the womb), bowel, bladder and ureters.

3. Superficial peritoneal endometriosis: The lesions involve the peritoneum, which is a thin film that cloaks the inner surfaces of the pelvis. The lesions are flat and shallow and do not invade into the spaces underlying the peritoneum.

Some patients have more than one type of disease present in their pelvis.

How is endometriosis diagnosed?

Endometriosis can be diagnosed by having a diagnostic laparoscopy (key hole surgery). This involves passing a thin telescope through a small cut in your umbilicus (navel). It is connected to a video camera and television so that the inside of the pelvis can be examined. This procedure requires a general anaesthetic.

Some types of endometriosis can be diagnosed through ultrasound or other imaging such as an MRI scan.

How is endometriosis treated?

Endometriosis is treated by medical or surgical methods.

Medical therapies include:

1. Painkillers (paracetamol, ibuprofen)
2. Hormones such as the oral conceptive pill, Depo-Provera ™ injection, Nexplanon™ implant and Mirena™ coil or types that cause a temporary and false menopause state (Zoladex™)

Surgery involves removing the deposits. This is mostly completed laparoscopically