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Endometriosis

How do doctors diagnose endometriosis?

Doctors often don't spot endometriosis right away. Many women see several doctors, over many months or years, before they find out they have endometriosis and get treatment.

There are several reasons why endometriosis is hard to spot.

Source:
Walker JJ.
Focus for the future; tackling the 'pelvic pain' problem in gynecologic practice: an interactive session.
International Journal of Gynaecology and Obstetrics. 2001; 74 (supplement 1): S25-S30.

Source:
Husby GK, Haugen RS, Moen MH.
Diagnostic delay in women with pain and endometriosis.
Acta Obstetricia et Gynecologica Scandinavica. 2003; 82: 649.

The symptoms are very different in different women.
Some women have no symptoms at all.
Some other illnesses have the same symptoms as endometriosis.

Source:
Royal College of Obstetricians and Gynaecologists.
The investigation and management of endometriosis: clinical green top guidelines.
Available at http://www.rcog.org.uk (accessed on 21 April 2008).

³ Many girls and women go to the doctor because they have painful periods. Only about half of them turn out to have endometriosis.

Source:
Gruppo Italiano per lo Studio dell'Endometriosi.
Prevalence and anatomical distribution of endometriosis in women with selected gynaecological conditions: results from a multicentric Italian study.
Human Reproduction. 1994; 9: 1158-1162.

⁴ To learn more, see Other illnesses with symptoms like endometriosis.
There's no simple test for endometriosis. You need to have a type of surgery to say for sure whether you have endometriosis. It's called a laparoscopy. A surgeon looks inside your body using a small camera. To read more, see below.
If you have painful periods but no other symptoms, your doctor may recommend you try treatments such as painkillers or birth control pills before choosing to have a laparoscopy. If the treatment works, you may not need to have a laparoscopy. See Simple treatments for painful periods.

Questions your doctor may ask

Your doctor may ask you about your symptoms and how they affect you. You may be asked questions about your sex life and your periods. These questions might include:

When did your periods start?
Do you get painful periods? Where is the pain? When does it happen exactly?
How many different people have you had sex with in the last few months?
Does it hurt when you have sex? If so, where does it hurt?
Have you ever had a

sexually transmitted infection
An infection that is spread by people having sex is called a sexually transmitted infection (STI) or a sexually transmitted disease (STD). Examples are HIV, gonorrhoea and syphilis.

sexually transmitted disease?
Have you had difficulty getting pregnant?

Physical exam

Your doctor may examine the area between your hips (your

pelvis
Your pelvis is the area between your hips.

pelvis), so you may need to get undressed.

You may also have an internal exam. Your doctor will put a gloved finger in your vagina, and a hand on your tummy. This lets your doctor feel your internal organs from the outside. It's best to do this exam during the first two days of your period. The doctor is feeling for:

Source:
Olive DL, Schwartz LB.
Endometriosis.
New England Journal of Medicine. 1993; 328: 1759-1769.

⁵

Bulges or tight areas (to see if parts of your body are stuck together)
The position of your womb (it usually leans forward not backward)
Tender areas (this might mean you have endometriosis in these places)
Signs of other illnesses that might be causing your symptoms (see Other illnesses with symptoms like endometriosis).

However, even if your doctor doesn't find anything wrong, you could still have endometriosis. You would need a test called a laparoscopy to be sure.

Sometimes an internal exam can be a bit uncomfortable. If you're nervous, take someone with you. Male doctors should ask a female nurse to come in if you're alone.

You don't have to have an internal exam. Your doctor will skip it if you're too young, too nervous, or don't want it.

Laparoscopy

This is the main test for endometriosis. It's the only test that can tell for sure if you have the disease.

Source:
Olive DL, Schwartz LB.
Endometriosis.
New England Journal of Medicine. 1993; 328: 1759-1769.

⁵

Source:
Prentice A.
Regular review: endometriosis.
British Medical Journal. 2001; 323: 93-95.

⁶

Source:
Wykes CB, Clark TJ, Khan KS.
Accuracy of laparoscopy in the diagnosis of endometriosis: a systematic review.
BJOG: An International Journal of Obstetrics and Gynaecology. 2004; 111: 1204.

⁷

Source:
National Institute of Child Health and Human Development (NICHD).
Endometriosis.
Available at http://www.nichd.nih.gov/publications/pubs/endometriosis (accessed on 21 April 2008).

⁸

Not everyone with painful periods needs this test. If you have painful periods and no other symptoms, your doctor may suggest that you try a simple treatment, such as painkillers, before you have a laparoscopy.

Source:
Prentice A.
Regular review: endometriosis.
British Medical Journal. 2001; 323: 93-95.

⁶

A laparoscopy is minor surgery. A surgeon looks inside you using a small camera. It doesn't take long, and you can normally go home the same day. You'll usually need to be asleep during the surgery, so you'll be given a

general anesthetic
You may have a type of medication called a general anesthetic when you have surgery. It's given to make you unconscious so you don't feel pain.

general anesthetic.

To learn more, see More about laparoscopy.

If you have endometriosis, the surgeon will look carefully to see how much you have, where it is, and whether there's any damage to your organs. This is called staging.

To learn more, see Stages of endometriosis.

Your surgeon may be able to treat the endometriosis there and then. The surgeon will talk with you about this before you have the test.

Other tests

Other tests for endometriosis are simpler but they can't say for sure whether you have the condition.

Source:
Olive DL, Schwartz LB.
Endometriosis.
New England Journal of Medicine. 1993; 328: 1759-1769.

⁵

Source:
Cheng YM, Wang ST, Chou CY.
Serum CA-125 in preoperative patients at high risk for endometriosis.
Obstetrics and Gynecology. 2002; 99: 375-80.

⁹

Pelvic ultrasound

A doctor puts a probe (shaped a bit like a small flashlight, with a round end) in your vagina. The probe uses sound waves to make an image on a screen. It's harder to see endometriosis with this test than with a laparoscopy. It's mainly used to look for cysts (small bags of fluid) on your ovaries.

Magnetic resonance imaging

Magnetic resonance imaging (or MRI for short) is a bit like an X-ray. It gives clear images of the inside of your body. It's a better test than an ultrasound, but not as good as a laparoscopy.

Blood tests

If you have a large amount of a substance called CA 125 in your blood, you may have endometriosis. The worse your endometriosis, the more CA 125 you'll have in your blood.

Source:
Cheng YM, Wang ST, Chou CY.
Serum CA-125 in preoperative patients at high risk for endometriosis.
Obstetrics and Gynecology. 2002; 99: 375-80.

⁹

But other conditions (such as ovarian cancer) and some infections, as well as pregnancy and periods, can also increase your levels of CA 125. So a blood test can't tell you for sure whether you have endometriosis.

Sources for the information on this page:

Walker JJ.Focus for the future; tackling the 'pelvic pain' problem in gynecologic practice: an interactive session.International Journal of Gynaecology and Obstetrics. 2001; 74 (supplement 1): S25-S30.

Husby GK, Haugen RS, Moen MH.Diagnostic delay in women with pain and endometriosis.Acta Obstetricia et Gynecologica Scandinavica. 2003; 82: 649.

Royal College of Obstetricians and Gynaecologists.The investigation and management of endometriosis: clinical green top guidelines.Available at http://www.rcog.org.uk (accessed on 21 April 2008).

Gruppo Italiano per lo Studio dell'Endometriosi.Prevalence and anatomical distribution of endometriosis in women with selected gynaecological conditions: results from a multicentric Italian study.Human Reproduction. 1994; 9: 1158-1162.

Olive DL, Schwartz LB.Endometriosis.New England Journal of Medicine. 1993; 328: 1759-1769.

Prentice A.Regular review: endometriosis.British Medical Journal. 2001; 323: 93-95.

Wykes CB, Clark TJ, Khan KS.Accuracy of laparoscopy in the diagnosis of endometriosis: a systematic review.BJOG: An International Journal of Obstetrics and Gynaecology. 2004; 111: 1204.

National Institute of Child Health and Human Development (NICHD).Endometriosis.Available at http://www.nichd.nih.gov/publications/pubs/endometriosis (accessed on 21 April 2008).

Cheng YM, Wang ST, Chou CY.Serum CA-125 in preoperative patients at high risk for endometriosis.Obstetrics and Gynecology. 2002; 99: 375-80.

This information was last updated on Nov 06, 2008

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