Diagnosing endometriosis

The first thing doctors do is ask about the type of symptoms you are having. To help him or her get a clearer idea of the symptoms, it is important to describe all of them in detail: when the pain started, how severe it is, where you notice it, how it feels, and when you have it. How the pain affects you may also play a role in deciding what needs to be done about the condition – for example, if it regularly disrupts your daily life and keeps you from doing normal everyday activities, or if your love life is affected.

A general gynecological examination is the next step in arriving at a diagnosis. During a pelvic exam, your doctor will check whether applying pressure to certain areas around the womb is painful. Nodules and hard lumps in the pelvic connective tissue may also be a sign of endometriosis. Before carrying out a pelvic exam, your doctor will put on sterile gloves. He or she will then feel your organs to find irregular shapes or hard areas by gently inserting one or two fingers into your vagina or anus while at the same time placing his or her other hand on top of your belly.

During a pelvic exam, the doctor usually has a look inside the vagina with the help of a medical instrument called a speculum as well. Only if the symptoms you have described and the pelvic exam (both feeling and looking) indicate that you have endometriosis can a decision be made about whether further diagnostic examinations are needed.

An ultrasound through the abdominal wall can detect signs of larger endometrial implants and cysts. The bladder and other organs can also be examined in this way. An ultrasound exam through the vagina is more appropriate for determining whether you have endometriosis in your ovaries. Smaller endometrial implants and adhesions (scar tissue) don't show up in ultrasound images, though.

If abnormal areas of tissue are found, it is sometimes possible to make a treatment decision based on these examinations. Whether or not further diagnostic examinations are needed will depend on how bad the symptoms are, as well as on other factors.

To be able to determine with some certainty whether you have endometriosis, a surgical procedure (laparoscopy) may be needed. This procedure is usually done with a general anesthetic. A thin tube is inserted into the abdomen. The tube has a tiny camera at the end of it, allowing doctors to see endometrial tissue and adhesions in the abdomen and pelvis. Endometrial implants and samples of tissue can be removed during this procedure too.

Laparoscopy can be used to rule out endometriosis quite reliably: If no implants are found, it is unlikely that you have endometriosis.

If endometrial implants are discovered in the ovaries or nodules are found in the lesser pelvis during laparoscopy, a tissue sample is usually taken and examined under the microscope (biopsy). This can confirm that it is actually endometriosis, and not another disease or a (rare) cancerous tumor.

Like any other kind of surgery performed under anesthesia, a laparoscopy carries risks. Because of this, it should only be considered if a clear diagnosis is needed in order to decide what kind of treatment a woman should have. This is the case if she has serious pain that greatly interferes with her everyday activities and her quality of life, or if the function of nearby organs is affected.

Due to the risk of possible side effects, treatment with hormone drugs like GnRH analogues is usually only started if the diagnosis has been confirmed using laparoscopy.

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 gynecological examination, it may be a good idea to examine the kidneys using ultrasound, or to look at the bladder and/or bowel using an endoscope. Imaging techniques are also sometimes used, but only rarely. These include computer tomography (CAT or CT) or magnetic resonance imaging (MRI).

Some women with endometriosis have higher levels of something known as CA125 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 generally no longer used in the diagnosis of endometriosis.

The following categories are commonly used by doctors to assess the extent of the disease (the size, number and location of endometrial implants):

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

But the stage of endometriosis doesn't tell you much about how severe the pain is. This is because women who have a similar extent of endometriosis can be affected in very different ways.