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Common Diagnostic Myths
There is a lot of misinformation out there about ultrasound and MRI for diagnosing endometriosis, so I’ve broken this section into common myths that doctors tell patients. So if a doctor says any of the following, it’s a red flag that you may want to look for a more expert doctor in endometriosis:
“Your scans are negative, so you don’t have endometriosis.”
Wrong. Scans can not rule out endometriosis. Even the best (or self-proclaimed “best”) ultrasound or MRI experts in the world cannot rule out endometriosis using any kinds of scans.
“All ultrasounds are the same.”
Most gynecologists are doing routine trans vaginal ultrasounds instead of expert-guided trans vaginal ultrasounds (ETVUS) for endometriosis. A routine ultrasound typically is quick and focused on the ovaries/uterus, while an ETVUS takes the time to systematically look for signs of endometriosis, looking at the other organs in the pelvic cavity like the bowel, bladder, as well as at the relationship/ movement between the pelvic organs. For example, signs of bowel endometriosis on an ultrasound could be if the bowel slides or not, thickening of the bowel and narrowing of the bowel lumen, and nodularity of the uterosacral ligaments and bowel wall among other findings.
However, it’s one thing to call an ultrasound “expert-guided” and another thing for it to actually be done by an expert.
And again, even ETVUS can’t rule out endometriosis.
“Ultrasound and MRI can definitively diagnose endometriosis.”
Scans cannot rule out endometriosis, meaning that you can still have endometriosis even with a negative scan.
Scans may be able to rule in endometriosis as a clinical suspicion (ie, suspected diagnosis). However, the only way to have a confirmed, 100% definitive diagnosis is via laparoscopy with a biopsy and pathology report. Until you have that pathology report, neither you nor your doctor know for certain what you have.
In February 2022, the European Society of Human Reproduction and Embryology (ESHRE) released updated endometriosis guidelines, stating that “Laparoscopy is no longer the diagnostic gold standard and it is now only recommended in patients with negative imaging results and/or where empirical treatment was unsuccessful or inappropriate.”
However, it’s important to keep a few things in mind:
1) As explained above, how the scans are done, the machine used, and the expertise of who is reading the scans is extremely important when using scans to look for signs of endometriosis. A regular OBGYN looking for signs of endometriosis by doing a quick ultrasound is not the same as an excision surgeon who uses scans extensively for pre-op planning and does meticulous, expert-guided scans multiple times a week.
2) Some endometriosis advocates and excision surgeons alike have criticized these new guidelines. Not because they are dinosaurs who can’t let go of their “dogma” or because they don’t want the patient to get a faster suspected diagnosis, but because for many patients it can increase the obstacles to proper endometriosis care – especially to excision surgery, which is already extremely inaccessible for the majority. These problems in endometriosis care already existed, but the fear is that misinterpretations of the updated guidelines will exacerbate them.
And unfortunately, we’ve already heard stories of doctors misinterpreting these guidelines, honing in on only the first sentence and saying that exploratory laparoscopy is no longer needed at all in any case – which isn’t what the guidelines state. Or articles published that laparoscopy is only a potential option for a patient with negative scans after hormonal medications are unsuccessful for managing their symptoms – which isn’t what the guidelines state. Once more, the patient is put on the hormone hamster wheel, cycling through first line and second line treatments, unable to get an exploratory laparoscopy as their doctor keeps trying multiple hormone options to “find the one that works for the patient”.
The majority of doctors who see endometriosis patients are regular gynecologists who are not experts in endometriosis. It’s estimated that there are only about 200-300 expert surgeons for endometriosis worldwide! Among non-experts, the push toward “diagnosing” endometriosis via scans and/or empirical treatment often goes hand-in-hand with “treating” endometriosis with hormones or GnRh drugs (yet these only manage symptoms and do nothing for the disease).
While it doesn’t seem like laparoscopy for diagnosis and laparoscopy for excision surgery are connected, the unfortunate reality is that many non-expert gynecologists in endometriosis don’t know about – or believe in – the benefits of excision, even though studies using quality-of-life comparisons and questionnaires before and after surgery have shown that excision provides more resolution to pain and symptoms, and longer lasting resolution, than ablation or hormonal medications. For some, a push away from diagnostic laparoscopy may reinforce their beliefs that surgery is not needed for endometriosis at all – not for diagnosis and not for treatment either.
An earlier diagnosis is much needed for endometriosis. Various studies have shown that the average time to be diagnosed is around 8 years in multiple countries. A diagnosis – definitive or suspected – is validation after years of gaslighting. It’s connection to a community that can help provide the patient support. It’s understanding your body and being able to drive deeper into research around your disease. It’s having something “official” which can make it easier to get support and accommodations in daily life. Being undiagnosed is a hard place to be. But early diagnosis needs to go hand-in-hand with early access to expert treatment. Many patients aren’t told about excision so they can’t make an informed decision on their treatment. Or if they need a referral to an excision surgeon (depends on their healthcare system/insurance), they aren’t able to get one because their current doctor believes that it’s not necessary and that they are able to “diagnose” and “treat” endometriosis because of misinterpretations of these new guidelines.
“Your scans are negative. Let’s start you on hormones or GnRh drugs and if your symptoms improve, it’s endometriosis.”
This is called empirical treatment. However, it cannot confirm if you have endometriosis. There are other reasons besides endometriosis as to why a person’s pain could go down when on hormones or in a low menopausal state.
You do not have to do empirical treatment if you don’t want to. The updated ESHRE guidelines still recommend that clinicians should offer a laparoscopy for diagnosis and treatment in patients with negative scans. You can discuss the pros and cons of an exploratory laparoscopy with your doctor. A true endometriosis expert can do an exploratory laparoscopy to diagnose your disease and excise it in the same surgery.
“Your scans show signs of endometriosis. Let’s start you on hormones or GnRh drugs to slow the progression of endometriosis.”
While it’s great to get a suspected diagnosis to the symptoms that have likely plagued you for years, early (suspected) diagnosis must go hand in hand with early expert treatment.
It’s the patient’s choice how they want to address their endometriosis, but the patient should know that excision surgery is the gold standard treatment because it actually removes the disease at the root. Hormones and GnRh drugs do not remove the disease and the disease can still progress when a person is on them. They are for symptom management only and don’t work for everyone.
It’s only when the patient has all the facts that they can give informed consent. Unfortunately, too many gynecologists are not aware of the facts themselves and therefore can’t provide them to their patient.
“Your scans show signs of deep infiltrating endometriosis. Since it’s on your X organ (bowel, bladder, etc), it’s too risky to operate. Let’s start you on hormones or GnRh drugs.”
This is very similar to the myth above, but in this case, your endometriosis has been deemed “too risky” to excise. Which sounds really scary! But in reality, in spite of some inexperienced doctors saying that bowel/bladder endometriosis is too “risky” to be removed, the truth is that in the hands of an actual expert excision surgeon who has extensive experience with bowel/bladder endometriosis, it generally can be fully excised with a very low risk of complication! When a doctor says that it’s “too risky” to remove endometriosis, it usually means that they lack the skills need to safely remove it. And of course if they don’t have the skills, we wouldn’t want them to operate there because there could be complications, so if a doctor says treating endometriosis is too risky, that’s likely a red flag to seek another excision surgeon.
“Your scans are negative. You could still have superficial endometriosis, but in that case you don’t need an exploratory laparoscopy or excision surgery.”
Superficial endometriosis isn’t seen on scans, but scans may see signs of an endometioma or deep infiltrating endometriosis. Even if your scans don’t show these 2 forms, that doesn’t mean you don’t not have it (as discussed above).
Some doctors incorrectly believe superficial endometriosis is “not a big deal” and that excision is only for endometriomas or deep infiltrating endometriosis. However, any type of endometriosis, including superficial, can cause a person symptoms, and excision is the gold standard treatment for all types of endometriosis. If your patient history/symptoms are indicative of endometriosis, a true endometriosis expert can do an exploratory laparoscopy to diagnose your disease and excise it in the same surgery. Additionally, the updated ESHRE guidelines still state that clinicians should offer a laparoscopy for diagnosis and treatment in patients with negative scans.
“You only have an endometrioma.”
Multiple studies have shown that ovarian endometriomas are often an indication that the person also has more severe pelvic and intestinal endometriosis. Endometriomas are best treated by excision surgery. Medical treatment (Lupron, Orilissa, birth control) doesn’t shrink them and they don’t resolve on their own.