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Diagnosing Bowel Endometriosis: Overview

From a patient’s perspective, one of the most traumatic aspects of having endometriosis isn’t always related to the disease itself, but can occur when a trusted medical professional dismisses your symptoms as trivial or suggests that they’re ‘all in your head.’  Making matters worse is that ultrasounds, colonoscopies, and other diagnostic imaging tests often fail to detect endometriosis (including bowel involvement).
And as mentioned previously, because the symptoms of bowel endometriosis notoriously mimic a bewildering array of other diseases – including most infamously IBS on one end of the spectrum and colorectal cancer on the other extreme – this can put women with bowel endo on a seemingly ceaseless merry-go-round of one wrong diagnosis after another, like what happened to this journalist, who suffered for 15 years before receiving a proper diagnosis. Even CNN listed endometriosis as among the top 15 disease that doctors get wrong.

And even the ancients from thousands of years ago got it wrong, as reported by a Nezhat et al study which uncovered suspected cases of endometriosis from centuries ago that were being misdiagnosed as madness, demonic possession, witch craft, hysteria, laziness, and nymphomania.

With historical odds like these, sometimes it can feel as if you’re up against the entire medical establishment just to get someone to believe you.

Even so, follow your instincts and don’t let initial negative test results discourage you from seeking a second opinion if you think you may have been misdiagnosed with irritable bowel syndrome – or worse, have had your symptoms dismissed as nothing more than anxiety or indigestion like what happened to these women.

You deserve to have your health concerns taken seriously. As such, in this next section, we provide information about diagnostic methods in a clinical setting that may help you or your health care provider distinguish bowel endometriosis from other diseases with similar symptomology.

Diagnosing Bowel Endo: Wrong Diagnoses Case Studies

Before we get to the diagnostic guidelines section, we thought it would be a good idea to talk about the potential for differential diagnosis tailspins that can ensue due to the symptom heterogeneity of bowel endometriosis which, as mentioned, can mimic so many other diseases and disorders. As a result, patients can find themselves bouncing from one specialist to another and end up receiving dozens of disparate diagnoses from different disciplines. Before you know it, you’ve got a 20 volume diagnostic opus but still no answers.

Of course, an endometriosis specialist will have a high index of suspicion for bowel endometriosis or other forms of the disease if bowel symptoms are reported, and will be familiar with atypical presentations, as well as known risk factors like those outlined in this textbook and in this study. Yet, at least initially, even a specialist will have a rather lengthy list of other possible conditions to consider, including:

Sample Differential Diagnosis for Bowel Endometriosis

  • Irritable Bowel Syndrome (IBS)
  • Crohn’s disease
  • Ischemic colitis
  • Ulcerative colitis
  • Radiation colitis
  • Other inflammatory bowel diseases (IBD)
  • Diverticulitis
  • Colorectal cancer
  • Metastatic cancer
  • Kidney stones or silent loss of kidney due to endometriosis
  • Pelvic inflammatory disease
  • Other infections
  • Ischemic stricture of the colon
  • Gastroenteritis
  • Celiac disease
  • Lactose or fructose intolerance
  • Other food allergies or intolerances

Unfortunately, if you don’t get an opportunity to see a specialist initially, you may be sent on a wildly different diagnostic path, depending on which type of doctor you initially visit. This is because every discipline has a unique differential diagnosis list, which, unfortunately, may not always include endometriosis.

For example, from an ER doctor’s perspective, endometriosis which causes acute right iliac fossa pain – that is, acute pain in the lower right side of your abdomen (along with nausea & vomiting) – has the potential of being mistaken for acute or perforated appendicitis, or burst appendix as it’s colloquially called. This means that in an emergency room setting, you might find yourself getting an emergency surgery to remove your appendix instead of getting your ileum bowel endometriosis treated.

As was noted previously, oncologists have also reported performing wrong surgeries due to bowel endometriosis being mistaken for colorectal cancer.

On the other hand, if a woman with undiagnosed bowel endometriosis is sent to a gastroenterologist, wrong surgeries thankfully are not usually the problem. However, the list of potential ailments will likely expand to include upper gastrointestinal tract diseases involving the esophagus, stomach, duodenum, and possibly even digestive tract organ diseases involving the liverpancreas, and gallbladder.

When you start to see a ballooning differential list like this, this means that the risk of getting sent on more diagnostic wild goose chases also increases, and, before you know it, you may find yourself being evaluated for increasingly obscure GI disorders like cyclic vomiting syndrome, epiploic appendigitischronic idiopathic intestinal pseudo-obstruction, or Cannabinoid hyperemesis syndrome, just to name a few that are listed on the updated American College of Gastroenterology’s Rome IV diagnostic guidelines.

A simple bi-digital pelvic examlike Nezhat et al reported and which we describe in the diagnostic guidelines section would have helped avert such diagnostic missteps. But, of course usually only gynecologists do pelvic exams, so specialists from other disciplines unfortunately do end up missing a lot of the diagnostic clues that would have led them to a suspected endometriosis diagnosis and a subsequent referral to an endometriosis specialist.

Such wrong turns are not just inconvenient; they contribute to lengthy diagnostic delays that expose women with endometriosis to unnecessary suffering and potentially preventable organ damage. And, not only is the risk for having a wrong surgery performed on women with endometriosis, there are also increased risks of having potentially harmful and unnecessary invasive diagnostic procedures performed, like multiple biopsies, upper GI endoscopies, repeat double-contrast colonoscopies, repeat CT scans with contrast dye, and repeat scans with other imaging technologies. Even though these procedures are only extremely rarely associated with severe complications, nevertheless patients shouldn’t be exposed to unnecessary risks in the first place.

In any case, too, recent studies have shown that the risks for some of these diagnostic procedures may be higher that initially believed. For example, one recent study found that the risk of complications from GI endoscopies may be 2-3 times higher than had been previously reported in the medical literature. As for gadolinium-based contrast agents used for 3 decades to enhance MRI images, there have been growing concerns about its links to potentially life-threatening contrast-induced nephropathy (kidney damage) in certain patients and other safety concerns that led the FDA to issue a warning in 2015. Even iodine-containing contrast dyes often used in the approximately 80 million CT scans performed each year in the U.S. come with an extremely rare (about 0.9 per 100,000 cases for high-osmolality media) but nevertheless potential risk for a fatal allergic reaction in certain susceptible patients. Repeat radiological tests like CT scans and X-rays may also lead to small, but nevertheless measurably increased risks of exposure to potentially harmful levels of radiation.

As you can see, then, the epidemic of misdiagnoses unfairly burdens women with endometriosis with unnecessary risks and potentially serious consequences. This is why we felt compelled to collaborate with the global endometriosis community and found the annual EndoMarch and World Endometriosis Day, so that endometriosis can get the recognition it deserves as one of the most ignored yet urgent public health issues of our time.