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Getting a proper endometriosis diagnosis can be challenging. It took eighteen years and a severe health complication before receiving my official diagnosis. However, I didn’t understand the diagnostic process. And I didn’t understand how to advocate for myself properly. Luckily, I can share what I’ve learned with you. So, you’re better prepared and can find a medical professional that will listen and receive a proper diagnosis.

Endometriosis Symptoms to Be Aware Of

Tracking your symptoms is an essential first step of the diagnostic process. Having a record of the symptoms you’ve experienced establishes a timeline. Additionally, you’re able to discuss your symptoms with authority and clarity to decrease the likelihood that you’re dismissed.

Endometriosis symptoms you need to be aware of are:

  • Pelvic cramping
  • Low back pain
  • Vaginal and rectal pain
  • Pain with ovulation
  • Painful intercourse
  • Painful periods
  • Irregular periods
  • Heavy bleeding during period
  • Abnormal spotting in between periods
  • Constipation or diarrhea
  • Nausea
  • Abdominal bloating and distension

Furthermore, understanding your family history of endometriosis will prove beneficial. For example, having a mother or sister with endometriosis increases your risk. So, talk with them and see if they’re comfortable sharing their experience with you. Ask them about their symptoms and the age of diagnosis. You can use this information when talking with your doctor. And let them know you suspect you have endometriosis and want to get additional testing.

What The Diagnostic Process Looks Like

Your doctor will take you through a process known as differential diagnosis. This is to identify the root cause of symptoms via a series of tests to rule out other potential causes. It’s important to understand that endometriosis symptoms are shared with other diseases and disorders, so it’s essential to rule them out.

doctor discussing a possible endometriosis diagnosis with patient sitting on an exam table

One of the first tests your doctor will perform is a pelvic exam. A pelvic exam will not diagnose endometriosis. But it can rule out any other abnormalities that may cause the symptoms you’re experiencing. The second test your doctor will recommend is an ultrasound. This imaging test provides a visual of the ovaries and uterus. It can reveal if there are any abnormalities like ovarian cysts present. However, the ultrasound cannot diagnose endometriosis. It can determine the presence of endometriomas which are cysts that commonly occur with endometriosis. But further testing needs to be done before an actual diagnosis is given.

If these tests do not reveal any issues and you’re still experiencing symptoms, you may be referred to a specialist. A specialist will have a better understanding of your symptoms and risk factors.

They will start with the basics and perform a pelvic exam and ultrasound. They may even recommend more advanced imaging scans such as a CT scan or MRI. However, endometriosis cannot be seen via imaging scans. Only cysts and endometriomas are visible.

Your doctor may make a couple of recommendations at this point. First, if your pain levels and symptoms are mild, they may recommend hormonal treatments or alternative methods to treat your symptoms. On the other hand, if you have moderate to severe pain, your doctor may recommend an exploratory laparoscopy.

doctor explaining what endometriosis is to a patient

Exploratory laparoscopy is a surgical procedure in which your organs are analyzed to determine the presence of endometriosis or if other underlying issues are causing your symptoms. This is the only way that endometriosis can be diagnosed. During this procedure, implants can be excised and biopsied to determine endometriosis. Additionally, if endometriosis is found, your doctor will remove the implants. And they will also correct any adhesions that may have developed.

What If Your Doctor Is Dismissive?

Endometriosis cannot be diagnosed via pelvic exam or imaging tests. It can only be diagnosed via a laparoscopy performed by a specialist. Failing to get a proper diagnosis leads to improper treatment.  And it increases the risk of misdiagnosis and progression of the disease.

If your doctor dismisses you and fails to recommend additional testing, don’t be afraid to get a second opinion. However, if your doctor prematurely diagnoses you and recommends treatments without a proper diagnosis, you’ll also need to seek a second opinion. Look for an endometriosis specialist that’s in or near your area.

Getting an Endometriosis Diagnosis Takes Time

Unfortunately, getting an endometriosis diagnosis isn’t a quick process. It takes time, diligence, and patience. However, understanding the basics of the diagnostic process makes advocating for yourself easier.

References and Related Reading

Web MD | How Do I Know If I Have Endometriosis?