Endometriosis can be difficult to diagnose. On average, it takes 10 years to receive a correct endometriosis diagnosis. Women are sometimes misdiagnosed with another condition or told they simply have heavy periods. This misdiagnosis can lead to years of unnecessary suffering and ineffective treatments.
Women may be misdiagnosed with a different condition prior to being correctly diagnosed with endometriosis. One challenge is that the symptoms of endometriosis are similar to those of other chronic conditions. Another issue is that endometriosis is generally diagnosed with surgery (typically laparoscopy), and doctors may be reluctant to put a patient through surgery. A further complication is that endometriosis symptoms are not constant and can vary from woman to woman.
Conditions frequently misdiagnosed in cases of endometriosis include pelvic inflammatory disease (PID), ovarian cysts, and fibromyalgia. Gastrointestinal symptoms such as diarrhea, constipation, and abdominal cramping may lead to a diagnosis of irritable bowel syndrome (IBS). Pain with urination or blood in urine without an infection may be found in women with endometriosis involving the bladder.
It is not uncommon to have one or more of these conditions in addition to endometriosis, which further complicates the diagnostic process.
Diagnosis usually begins with a thorough medical history that includes discussion about what symptoms are experienced and how severe they are —as well as where, when, and how they are felt. The doctor may ask whether any female relatives have received diagnoses of endometriosis — or have described similar symptoms — since heredity seems to be a risk factor for developing endometriosis.
The doctor will perform a physical examination, including a pelvic exam. During the pelvic exam, the doctor inserts fingers into the vagina and checks whether gently moving the womb and applying pressure to certain areas is painful. They will feel for lumps that indicate cysts or scars on reproductive organs.
Endometriosis diagnosis can only be certain after the doctor performs a laparoscopy and biopsies any suspicious tissue. Laparoscopy is a minor surgical procedure in which a laparoscope, a thin tube with a camera at the end, is inserted into the abdomen through a small incision. Laparoscopy is also used to determine the location, extent, and size of endometrial growths.
Laparoscopy is considered the gold standard for the diagnosis of endometriosis. The following noninvasive imaging procedures may also be used during the workup for pelvic pain:
There is no cure for endometriosis at the present time, although research continues. Some women experience endometriosis symptoms all their lives despite hysterectomy or even after menopause, while symptoms lessen or disappear for others later in life.
There are effective treatments to control pain and other symptoms caused by endometriosis. Read more about potential treatment options.
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