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Endometriosis is divided into four stages, diagnosed based on how extensive endometrial lesions lesions are, whether you have ovarian cysts and scarring.

Approximately 200 million women across the globe suffer from endometriosis, including up to 10 percent of US women in their reproductive years. This chronic inflammatory condition may be asymptomatic in more than half of all patients, however, potentially making the real number of those affected much larger. 

Endometriosis takes its name from the endometrium, the tissue that normally lines only the uterus — where it plays an important role in the menstrual cycle and fertility. The endometrium thickens during each menstrual cycle, and is expelled during menstruation at its end if pregnancy doesn't occur. In women with endometriosis, however, endometrial tissues additionally line other internal organs — the fallopian tubes, ovaries, bladder, bowels, and abdominal cavity can all be affected by this extrauterine growth. Unlike the uterus, these other organs do not come with a built-in "waste disposal mechanism", and the accumulation of tissues leads to inflammation, scarring, and pain.  

The stages of endometriosis

The American Society of Reproductive Medicine classifies endometriosis in several stages of severity:

  • Stage 1 (I): Minimal
  • Stage 2 (II): Mild
  • Stage 3 (III): Moderate
  • Stage 4 (IV): Severe

The stage with which an individual patient is diagnosed depends on:

  • The extent of endometrial lesions
  • The areas of the body in which they are found
  • Whether the patient has adhesions, and how pervasive they are
  • Whether the patient has ovarian endometriomas (sometimes called chocolate cysts) and how big they are
  • Whether and to what extent the fallopian tubes are obstructed by endometrial lesions
Stages are assigned on the basis of a laparoscopic evaluation, and most patients will fall into Stage 1 or Stage 2. Stage 1 endometriosis features minimal endometrial lesions and almost no adhesions. Stage 2 patients will have more endometrial lesions that are also deeper, but still minimal adhesions. Women with Stage 3 endometriosis have a larger number of deeper implants along with small cysts in at least one of their ovaries and some adhesions, while stage 4 is characterized by many deep endometrial lesions, large ovarian cysts, unilateral or bilateral, and extensive adhesions.

How is endometriosis diagnosed?

Because the symptoms of endometriosis are very similar to numerous other conditions of the reproductive tract, it isn't uncommon to initially be misdiagnosed — and some women even find that their doctors initially dismiss their experiences as "just being a normal part of menstruation". It takes some patients years to get the correct diagnosis, also because they may not seek medical attention as soon as they notice their symptoms.

The sole way to accurately diagnose endometriosis is through an exploratory laparoscopy (viewing operation — for which instruments are inserted into small openings in the abdomen). During such a laparoscopy, a biopsy of endometrial tissues may also be taken and studied.

Other tests that may be used during the diagnostic process include:

  • Ultrasound, MRI, and CT scans — these can confirm ovarian cysts and lead to definite suspicions that you probably have endometriosis, but cannot lead to a fully accurate diagnosis.
  • A pelvic exam, during which your doctor feels your abdomen, can identify some cysts and scarring, but again won't lead to a definitive diagnosis.
  • A test for your levels of anti-mullerian hormone (AMH) can give clues into your ovarian reserves, something that can also point to endometriosis — it is not currently clear how useful this test is.

Another technique has been developed more recently, as well — when a small endometrial biopsy is taken transvaginally, this sample can then be tested to see whether nerve fibers are present. This novel diagnostic tool is less invasive for patients and has been shown to nearly always have the ability to correctly diagnose endometriosis.

Are your symptoms worse if you have a higher stage of endometriosis?

Confusing as this seems, patients' symptoms are not necessarily more severe if they have Stage 3 or 4 endometriosis, and some women with mild endometriosis actually experience more pain than some women with severe endometriosis. 

Regardless of the stage you are diagnosed with, you may experience any of these symptoms:

  • Pelvic pain, which typically increases in severity as menstruation approaches and while you are on your period
  • Lower back pain during and before periods
  • Painful periods (dysmenorrhea)
  • Cramping around the time of menstruation
  • Abnormally heavy menstrual periods (menorrhagia)
  • Bleeding between periods
  • Pain during and after sex
  • Painful bowel movements
  • Infertility

Some women with endometriosis are asymptomatic as well, however. Although it is clear that anyone experiencing some of the above symptoms should see an OBGYN, the fact that you may not have symptoms at all points to a clear need to have regular OBGYN checkups even if you feel just fine — both because of endometriosis and other possible gynecological conditions.

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