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As you may know, getting diagnosed with endometriosis can take upwards of an entire decade. [1] With hundreds of millions of women suffering from endometriosis worldwide, why does it consistently take decades to get diagnosed.
Unfortunately, there is no easy blood or imaging test that can reliably detect endometriosis. While some conditions, like diabetes,can easily be detected with a simple blood sample, there’s not a reliable non-invasive way to diagnose endometriosis.
The gold standard for diagnosing endometriosis is a surgery called laparoscopy, where doctors take samples of the endometriosis tissue and look at it under a microscope (“histology”). [2] But, no one wants to receive surgery if they can avoid it! So, we get asked frequently, “Is it possible to get diagnosed with endometriosis without surgery?”
And the answer is, yes, it is possible to be diagnosed with endometriosis without surgery. However, not all endo can be diagnosed non-invasively!
In January 2019, the American Journal of Obstetrics and Gynecology published a “Call to Action” to diagnose endometriosis “clinically.”[3] This means that, rather than requiring surgery for diagnosis, doctors should give suspected endo patients a diagnosis of endometriosis without laparoscopy based on symptoms, family history, menstrual cycle characteristics, and physical examination. They argue that they intend to "make the diagnosis of endometriosis more accessible."
However, real world experience shows that "clinical diagnoses" don't work well in practice. As you've probably experienced, many general practitioners (GPs) and unspecialized OBGYNs don't have the knowledge necessary to identify common endometriosis symptoms. Additionally, symptoms vary from patient to patient; every body is unique. One person with endo on the bowel may have pain with defecation, while another with endo on the bladder may have bladder symptoms. So, what actually happens all too often is that patients receive no diagnosis, and are left feeling dismissed by their physician.
However, researchers are moving forward with using Transvaginal Ultrasound (TVUS) as a method to diagnose endometriosis in a "noninvasive" manner (yeah...it's pretty invasive, but at least it's not surgery).
Studies have shown that this type of ultrasound is good at detecting two types of endometriosis: "deep" endometriosis and endometriosis found on the ovaries (endometriomas). [4,5] In fact, an extensive analysis found that TVUS could actually replace surgery to detect endometriomas. That means that you can receive an endometriosis diagnosis from TVUS.
However, TVUS cannot detect ALL endometriosis: it is particularly bad at spotting "superficial" endometriosis. And, importantly, it must be performed by a skilled operator, and there are very few skilled operators who can actually detect even deep endometriosis. So, even if your ultrasound came out "clean," you could still have endometriosis.
We know so many women who are struggling to find a diagnosis. If this is you, you're not alone. Your best best is to track your symptoms and see a specialist who knows how to properly interpret those symptoms and has a skilled utlrasound operator that you can trust. Even then, a surgery may be required to say for absolute certain that you have endometriosis.
Luckily, startups are starting to tackle the endometriosis diagnosis problem. For example, DotLab is working on a non-invasive diagnostic option for endometriosis. They still need to jump through a few more research, regulatory, and reimbursement hurdles, but hopefully in the near future we won't rely on surgery for a diagnosis.
We’d love to hear about your endometriosis diagnosis experience and share your story with other patients. Shoot us an email at patients@visanahealth.com and we’ll be in touch!
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[1] Diagnostic delay for endometriosis in Austria and Germany: Causes and possible consequences, Hudelist et. al, Human Reproduction 2012
[2] Johnson N.P., Hummelshoj L. World Endometriosis Society Montpellier Consortium. Consensus on current management of endometriosis. Hum Reprod. 2013; 28: 1552-1568
[3] Clinical diagnosis of endometriosis: a call to action, Agarwal et. al, AJOG 2019
[4] Nisenblat V., Bossuyt P.M., Farquhar C., Johnson N., Hull M.L. Imaging modalities for the non-invasive diagnosis of endometriosis. Cochrane Database Syst Rev. 2016; 2: CD009591
[5] Turocy J.M., Benacerraf B.R. Transvaginal sonography in the diagnosis of deep infiltrating endometriosis: a review. J Clin Ultrasound. 2017; 45: 313-318
