How Endometriosis is Diagnosed

Endometriosis is common. It’s thought that at least one in 10 women have endometriosis, and it's likely that that number is even higher.

Endometriosis often goes undiagnosed due to a lack of open conversations between women and their health care providers, pelvic pain being dismissed or providers not asking the right questions.

Symptoms of Endometriosis

Endometriosis occurs when uterine-like tissue grows outside of the uterine. While some women with endometriosis don’t experience any pain, the following symptoms are common endometriosis symptoms:

• Very painful or heavy periods. This type of pain may cause women to spend days in bed while on their period or make it difficult to do simple tasks such as walking.
• Nausea or vomiting. This may be due to the intense pain a woman experiences during her period.
• Pain with sex. Sex may pull or stretch tissue causing pain in certain or all positions.
• Infertility. It is thought that endometriosis impacts the quality of the eggs that a woman produces. A woman with endometriosis can still get pregnant, but she may need help from an infertility specialist to do so.
• Pain with bowel movements or blood in the stool. This may occur in advanced-stage endometriosis.

What To Expect at Your Pelvic Pain Visit

When you visit a provider for pelvic pain, you can expect them to gather your history, perform a physical exam and possibly order imaging.

Gathering Your History

Your provider will want to work with you to discover the history of your pelvic pain. They might ask you questions such as:

• What symptoms are you experiencing?
• How long have these symptoms been going on?
• What makes your symptoms better or more bearable?
• What makes your symptoms worse?
• What times outside of your period do you experience pain?
• What is your family history of endometriosis or other pelvic disorders?
• Do you have any history of pelvic surgery?

Having a family member with endometriosis and having had a C-section may increase your risk of endometriosis, as endometriosis can develop on or around the tissue where incisions were made.

Pelvic Exam

Next, your provider will want to examine your pelvis. They may perform a test in which a cotton swab is used to touch the vulva to see if this may be producing a woman’s pain. Then, they complete an internal vaginal exam to access the pelvic floor muscles and, using both hands, feels for the size and shape of the uterus, as well as any masses on the ovaries.

For a woman who has endometriosis, a provider may be able to feel nodules or stiffness in the pelvic areas.

Imaging

A provider may order imaging based on physical exam findings. For instance, a pelvic ultrasound may be used for the radiologist to see if the woman has an endometrioma, which is a specific cyst that can sometimes occur in women who have endometriosis.

After an ultrasound, a pelvic MRI may be ordered. The pelvic MRI is more sensitive than the ultrasound and enables radiologists to identify implants of endometriosis that are as small as a centimeter in size.

Endometriosis Treatment Options

The first recommendation for dealing with pain from endometriosis is to take non-steroidal anti-inflammatory medications (NSAIDs) on a scheduled basis. For example, your provider may recommend you take Motrin every six hours beginning the day before your period and continuing while on your period.

Hormonal Suppressing Medications

If anti-inflammatory medications do not help with pain, the next recommended treatment option is a trial of hormonal-suppressing medications. This might include medications that suppress estrogen or progesterone, depending on patient history.

Diagnostic Laparoscopy

If you’re still experiencing pain, and other conditions that may be causing pain have been ruled out or addressed, a diagnostic laparoscopy will likely be recommended. This outpatient procedure can help officially diagnosis endometriosis.

Your surgeon will go through incisions in your belly button that are only about five millimeters in length. Using a camera, they will perform a comprehensive pelvic survey. They will look for lesions that suggest endometriosis and, if they are found, cut them out. This tissue will be sent to pathology where a pathologist will examine it to see if the tissue is similar to the lining of the uterus. This will confirm whether it is endometriosis. that look concerning to endometriosis, cut them out if they are located, and send them to pathology. There, a pathologist will exam the tissue to confirm whether it is endometriosis.

Pelvic Floor Physical Therapy

Pelvic floor physical therapy is also an effective treatment option for endometriosis. It works by addressing myofascial pain, a type of pain that is common among people with inflammatory conditions such as endometriosis.

Receiving an Endometriosis Diagnosis

Once endometriosis is diagnosed, it is considered a chronic medical condition. This unfortunately means that there is no cure for endometriosis.

Certain medications have been created to specifically treat endometriosis pain. If hormonal suppression hasn’t been successful, you may be a good candidate for some of these other medications.

Research shows that the longest pain-free period that a woman with endometriosis experiences is after her first surgery. More than 50% of women report that their pain returns within two to four years after their first surgery.

Even a hysterectomy is not considered curative. Research shows that 25-42% of women will continue to have pain after a hysterectomy is done for the treatment of chronic pelvic pain.

Your provider may recommend additional experts, such as a pain psychologist or sexual health therapist, to help you manage your condition.