Diagnosing endometriosis

The first thing your doctor will do is ask you about your medical history (anamnesis). To help him or her get a clearer idea of your symptoms, it's important to describe all of them:

• Since when have you had the pain?
• How severe is it?
• Where in your body is it?
• What does it feel like?
• When does it occur?

How the pain affects your life may also help to determine what needs to be done about the condition – for example, if it regularly keeps you from doing normal everyday activities, or if your love life is affected.

It is also important to tell the doctor whether you would like to have any (more) children, which treatments you have tried out so far, and how effective they were.

The next diagnostic step is a general pelvic exam. Here the doctor typically looks inside your vagina with the help of a medical instrument called a speculum. That way, they might see endometriosis tissue towards the back end of your vagina. The doctor will also check whether it's painful when they apply pressure to certain areas around the womb and in the lower part of your pelvis. Nodules and hard lumps in the pelvis may also be a sign of endometriosis. To carry out this “feeling” (palpation) part of the pelvic exam, your doctor will first put on sterile gloves. They will then feel the shape and texture of your organs by gently inserting one or two fingers of one hand into your vagina or anus while at the same time placing their other hand on top of your belly.

If the symptoms you have described and the pelvic exam (both looking and feeling) indicate that you have endometriosis or another issue, the doctor will decide whether further diagnostic examinations are needed.

An ultrasound scan through the vagina can find signs of larger areas of endometriosis tissue and cysts. Organs like the bladder and the rectum (at the end of the bowel) can also be examined in this way. Endometriosis tissue on the peritoneum (the membrane lining the abdominal cavity) can sometimes be seen in ultrasound images taken from the outside of the belly. Small areas of endometriosis tissue and adhesions (tissue that is stuck together) can't be seen in ultrasound images, though. And sometimes endometriosis tissue can't be seen in ultrasound scans because of where it is in the body.

If abnormal areas of tissue are found, it is sometimes possible to already make a treatment decision based on these examinations alone. Whether or not further diagnostic examinations are needed will depend on the symptoms and the findings so far, among other things.

Sometimes doctors consider doing a laparoscopy to look inside your belly – for example, if other examinations haven't led to any clear findings and you have troublesome symptoms that suggest you could have endometriosis. Or if you've tried hormone therapy and it hasn't helped. Laparoscopy is a surgical procedure that is done under general anesthesia. A thin tube is inserted into your abdomen (belly) through a small cut. The tube has a tiny camera at the end of it, allowing doctors to see endometriosis tissue and adhesions in your abdomen and pelvis. Areas of endometriosis tissue and samples of tissue can be removed during this procedure, too.

If endometriosis tissue is found during this procedure, it is usually removed straight away. A tissue sample is also taken to examine under a microscope (biopsy). This can confirm whether it is actually endometriosis, and not another disease or a (rare) cancerous tumor.

Like any other kind of surgery performed under general anesthesia, a laparoscopy carries risks. Because of this, it is only considered if it's really needed for the diagnosis and treatment. This is the case if, for example, the pain doesn't go away despite hormone therapy and it reduces your quality of life, or if the function of other organs is affected. Laparoscopy can also be an important way to rule out other medical problems.

In women who are finding it difficult to get pregnant, less invasive tests are normally done first. A laparoscopy is only done if the results of these tests aren't clear and endometriosis is likely.

Depending on both the severity of symptoms and the results of the pelvic exam, it may be a good idea to examine the kidneys using ultrasound, or to look at the bladder and/or bowel using an endoscope. Less often, magnetic resonance imaging (MRI) is used. This allows doctors to see endometriosis tissue, even if not all of it. These examinations can also be helpful when planning surgery to treat endometriosis.

Some women with endometriosis have higher levels of a substance called CA 125 in their blood. Doctors sometimes measure these levels. But doing this or other blood tests doesn't help to clearly diagnose or rule out endometriosis. So these blood tests are not used in the diagnosis of endometriosis.

Depending on the outcome of diagnostic examinations, doctors use certain categories (or "stages") to describe endometriosis. This helps them to assess the extent of the disease. The following stages are based on things like the size, number and location of endometrial implants:

• “Minimal” (Stage I),
• “Mild” (Stage II),
• “Moderate” (Stage III), and
• “Severe” endometriosis (Stage IV).

More recently, a different approach known as the "Enzian score" has increasingly been used in some countries to classify endometriosis.

But endometriosis classification systems don't tell you much about how severe the symptoms are. This is because women who have a similar extent of endometriosis can be affected in very different ways.