Endometriosis

Key Points

Endometriosis occurs when tissue similar to the inner lining of the womb (endometrium) is found elsewhere, usually in the pelvis around the womb, ovaries and fallopian tubes.
Endometriosis can sometimes be a difficult condition to diagnose. It is a chronic condition that can affect your physical, sexual, psychological and social wellbeing.
Common symptoms include pelvic pain and painful, sometimes irregular or heavy periods. It can cause pain during or after sex and can lead to fertility problems.
Treatment options include pain-relieving medications, hormones and/or surgery, and treatment for Subfertility.

What is endometriosis?

Endometriosis is a condition where tissue similar to the inner lining of the womb (endometrium) is found elsewhere, usually in the pelvis around the womb, ovaries and fallopian tubes. It is a very common condition, affecting around 1 in 10 women. You are more likely to develop endometriosis if your mother or sister has had it. Endometriosis usually affects women during their reproductive years. It can be a long-term condition that can have a significant impact on your general physical health, emotional wellbeing and daily routine.

What are the symptoms?

Common symptoms include pelvic pain and painful, sometimes irregular or heavy periods. It can cause pain during or after sex and can lead to fertility problems. You may also have pain related to your bowels, bladder, lower back or the tops of your legs, and experience long-term fatigue. Some women with endometriosis do not have any symptoms. Endometriosis can cause pain that occurs in a regular pattern, becoming worse before and during your period. Some women experience pain all the time but for others it may come and go. The pain may get better during pregnancy and sometimes it may disappear without any treatment.

What causes endometriosis?

The exact cause of endometriosis is not known but it is hormone dependent. This means that, just like the endometrium which responds to hormonal changes resulting in a period, the endometrial-like tissue located outside the womb also bleeds. This bleeding can cause pain, inflammation and scarring, and can possibly damage your pelvic organs.

Endometriosis may be found:

on the ovaries, where it can form cysts (often referred to as endometriomas or ‘chocolate cysts’)
in the peritoneum (the lining of the pelvis and abdomen)
in or on the fallopian tubes
on, behind or around the womb
in the area between the vagina and the rectum. Endometriosis can also occur within the muscle wall of the womb (adenomyosis) and occasionally on the bowel and/or bladder. It may sometimes be found in other parts of the body, but this is rare.

How is it diagnosed?

Endometriosis can be a difficult condition to diagnose. This is because:

The symptoms of endometriosis vary so much
The symptoms are common and can be similar to pain caused by other conditions such as irritable bowel syndrome (IBS) or pelvic inflammatory disease (PID)
Different women have different symptoms
Some women have no symptoms

What will happen if I see a healthcare professional?

You should be asked:

About any pain you have and whether it has a pattern or is related to anything, in particular your periods
About your periods – are they painful and how heavy are they?
Whether you have any pain or discomfort during sex
About problems with your bowels or urinary symptoms at the time of your period
About any difficulty you may have experienced getting pregnant if you have one or more of the above symptoms.

Your Doctor may carry out an internal examination with your consent. This helps to localise the pelvic pain and the doctor can feel for any lumps or tender areas. You will be offered a chaperone during this examination. You will be

Able to discuss any concerns and you will have an opportunity to ask other questions.

What tests might I be offered?

Tests usually include

A pelvic ultrasound scan. This may be a transvaginal scan to check the uterus and ovaries. It may show whether there is an endometriotic (also known as a ‘chocolate’) cyst in the ovaries or may suggest endometriosis between the vagina and rectum.
You may be offered a laparoscopy, which is the only way to get a definite diagnosis. This is carried out under a general anaesthetic. Small cuts are made in your abdomen and a telescope is inserted to look at your pelvis. You may have a biopsy to confirm the diagnosis and images may be taken for your medical records.
Your healthcare professional may suggest treating the endometriosis at the time of your first laparoscopy, either by removing cysts on the ovaries or treating any areas on the lining of your pelvis. This may avoid a second operation. Sometimes, however, the extent of endometriosis found means that you may need further tests or treatment.
The procedure, including any risks and the benefits, will be discussed with you. After your operation you be will told the results. You can often go home the same day after a laparoscopy most of the times.
An MRI scan may be suggested if the condition appears to be advanced.

What are my options for treatment?

The options for treatment include those listed below.

Surgery can treat or remove areas of endometriosis. The surgery recommended will depend on where the endometriosis is and how extensive it is. This may be done when the diagnosis is made or may be offered later. Success rates vary and you may need further surgery. Your gynaecologist will discuss the options with you fully.
Possible operations include:

Laparoscopic surgery – when patches of endometriosis are destroyed or removed
Laparotomy – for more severe cases. This is a major operation that requires a cut in the abdomen so that areas affected with endometriosis can be removed to provide symptom relief. This may involve removing large endometriotic cysts from your ovaries or even removal of your ovaries with or without performing a hysterectomy (removing the womb). You will not be able to have children after a hysterectomy. Longer term pain relief is more likely if your ovaries are removed. However, because of the health risks associated with removal of ovaries, your healthcare professional will discuss this and the possible need for hormone replacement therapy (HRT) with you.

Sometimes other surgeons, such as bowel specialists, will be involved in your surgery.

Fertility treatment

Getting pregnant can be a problem for some women with endometriosis. Hormonal treatment is not advisable when you are trying to conceive and surgical treatment may be more appropriate. Your healthcare professional should provide you with information about your options and arrange timely referral to a fertility specialist if appropriate.

Other options

Some women have found the following measures helpful: