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Endometriosis

Information for Patients

U Sound file – en-do-mee-tree-o-siss

What is endometriosis?

Endometriosis is a common condition for women during the phase of life between puberty (when the periods begin) and menopause (when the periods cease). 

The glandular lining of the uterus (womb) is called the endometrium, and endometriosis is a condition where deposits of tissue that are very similar to the lining of the uterus develops elsewhere, most commonly in the pelvis.  In that same way that the normal endometrium responds to hormonal signals and bleeds each month, causing the menstrual period, deposits of endometriosis can swell and bleed.

Endometriosis is probably a common condition, although it is difficult to determine this accurately.  It can affect women at all stages of their reproductive lives.

What effects can endometriosis have?  

Endometriosis can affect women in a number of ways.  The most common effect is pain.  This pain is usually felt in the pelvis, and may be felt as a ‘deep, nagging pain.’  The pain is sometimes worsened during or after sex.  The pain often occurs in a cycle, often just before or at the start of the menstrual period. 

Another effect is to make becoming pregnant more difficult.  Sometimes, women with endometriosis experience spotting or discharge just before a period starts, or possibly have a heavier period than usual. 

Some women with endometriosis will have no symptoms at all, or do not recognize their symptoms.

What causes endometriosis?

Although there are many theories, it is not absolutely certain what causes endometriosis.  For a long time, it has been thought that menstrual blood flows back through the fallopian tubes and into the pelvis, carrying small fragments of endometrial tissue with it.  However, this explanation may be too simple and there are other possible causes.

Once the endometrial tissue begins to grow, it responds to a woman’s hormonal cycle and will swell and bleed around the time of the menstrual period.  The blood is often trapped in the body and cannot escape. 

Common parts of the pelvis where endometriosis is found are:

  • On the ovaries.  Endometriosis may cause cysts full of dark fluid, called ‘chocolate cysts’.
  • On or around the uterus, or behind it.
  • Near or on the fallopian tubes.
  • On the bladder and the bowel, or rarely other parts of the body.

How is endometriosis diagnosed?

It can be difficult to tell if a woman has endometriosis.  Each woman will experience endometriosis differently, and some women with the condition will have no pain at all.  At the present time, the only way to determine whether a woman has endometriosis with certainty is to perform a procedure called a laparoscopy.  It is possible that other, less invasive tests will come into widespread use.  However, definitive treatment of endometriosis is still likely to involve laparoscopy.

View a YouTube video clip of a laparoscopy here:

In some cases, when there is a deposit of endometriosis on the ovary, this can be seen at an ultrasound.  However, if an ultrasound shows normal findings, this does not mean that endometriosis is not present.

What happens when I see a gynaecologist about endometriosis?

Specialist gynaecologists are experienced in helping women manage endometriosis. 

The gynaecologist will ask you questions about the problems you are having, and also about you general health and past history, often including your family history.  Results of test that your family doctor has undertaken will be reviewed.  The gynaecologist will usually examine you, and may perform tests such as a Pap smear or ultrasound.

To locate a gynaecologist, please visit the RANZCOG Locate an Obstetrician/Gynaecologist Search webpage. 

What treatments are available for endometriosis?

The main purposes of treatment are to relieve pain, make periods more bearable, and to improve fertility if this is desired.

Medications are available to treat pain and reduce inflammation.

Since the tissue in endometriotic deposits is almost always receptive to the effect of hormones, many treatments will be hormonally-based:

The oral contraceptive pill (‘the pill’)

When a woman ovulates (releases an egg) each month, the fluid that is released with the egg is very rich in oestrogen.  This oestrogen stimulates growth and activity in the endometriosis.  By using an oral contraceptive to stop ovulation, the levels of oestrogen in the pelvis are reduced and this can help settle the activity of endometriosis.  As well, by running packets of the pill together to ‘skip’ periods, women and reduce the number of painful periods they have.  It is important to realise, though, that use of oral contraceptives will not make endometriosis go away.

Mirena coil

Mirena is a small device that is shaped like a T.  This is placed in the uterus and releases a progesterone-like hormone.  This has been shown to reduce the activity and pain of endometriosis over time for many women.

Other types of progesterone-like hormones

These medications can help settle the activity of endometriosis when used over time.

GnRH-agonists

Some implants and sprays can switch off the release of reproductive hormones in women.  However, this can induce a state like menopause that women may find unpleasant.  It is unusual to use such medications alone for more than a few months, as there can be longer term side effects.

It is important to realise that the medications used for treatment of endometriosis are commonly contraceptive (they stop pregnancy occurring), or cannot be used in pregnancy.

Surgery for endometriosis

As well as allowing the gynaecologist to find out whether endometriosis is present, laparoscopy and laparoscopic surgery techniques allow the gynaecologist to treat endometriosis.  This is usually done by either cutting the deposits of endometriosis out (excision) or by cauterising small deposits.  It is also possible to undertake procedures to assess fertility, like checking the health of the fallopian tubes, and whether they have been affected by endometriosis. 

Surgery for endometriosis can be simple or very difficult, and if you are contemplating surgery it is important to have a clear understanding of the nature and purpose of any surgery that is planned.  Your gynaecologist is trained and experienced in making judgements about the need for surgery, and what procedures might be performed.

What happens if endometriosis is not treated?

For women to decide whether to pursue treatment or not, it is very important to understand what happens to endometriosis when it is untreated.  In many cases, endometriosis will remain a relatively minor conditions.  As previously stated, some women do not know that they have the condition.  However, endometriosis will worsen over time for almost half of women in whom the diagnosis is made.  In severe cases, it can cause infertility, and can damage other organs such as the bladder or bowel. 

Each woman is different, and it is important to discuss your individual case with your specialist gynaecologist. 

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