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Remember, this is educational information only and not medical advice (and I am not a doctor nor an expert on endometriosis). Always check with your qualified medical professional before making any changes to your treatment plan.
In 2021, the WHO estimated that more than 190 million people worldwide have endometriosis. In spite of its prevalence, there is often a long delay in diagnosis. Various studies have shown that the average time to be diagnosed is around 8 years in multiple countries.
Delays in diagnosis can result for many reasons. The first hurdle many endometriosis patients encounter is just trying to get a doctor to take them seriously when they report their pain. It may be due to the sex and gender bias in medicine, a racial bias, or from the doctor’s lack of knowledge on endometriosis, but many patients report having their pain dismissed over and over again; being told that it’s “all in their head”, stress, or anxiety; or being told that menstrual pain, bladder pain, digestive symptoms, pain in people assigned female at birth, etc, is “normal.”
Once that hurdle to be taken seriously is overcome, gynecologists may believe the patient, but due to a lack of training in the disease, are unable to diagnose it.
Doctors experienced in endometriosis may suspect endometriosis based on the patient’s symptoms, but many general practitioners and gynecologists have limited knowledge on the disease. A 2012 study of 100 doctors found that 63% felt ill at ease in the diagnosis and follow up of people presenting with endometriosis. One half of physicians could not cite three main symptoms of the disease out of dysmenorrhea, dyspareunia, chronic pelvic pain and infertility.
Endometriosis symptoms can present as digestive complaints, urological symptoms, full body pain, joint pain, or other symptoms, depending on where the endometriosis is located and other factors. This may prompt a patient to see a gastrointestinal doctor, urologist, rheumatologist, or another specialist who misdiagnoses them with a different condition when the underlying cause is actually endometriosis. With a misdiagnosis or even a co-condition, such as Painful Bladder Syndrome, Irritable Bowel Syndrome, Fibromyalgia, or Generalized Anxiety Disorder, endometriosis symptoms can be blamed on this other condition.
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.
- Not all forms of endometriosis can be seen on scans. Superficial endometriosis can’t be seen on scans, but signs of endometriomas or deep infiltrating endometriosis may be seen.
- How the scans are done, the machine used, and the expertise of who is reading the scans is extremely important.
- Due to lack of experience/skill, doctors may not recognize signs of endometriosis on ultrasounds or MRIs, or know that not all forms of endometriosis show up on these scans, and therefore a negative scan doesn’t necessarily mean the patient doesn’t have endometriosis.
- Many doctors use ultrasounds, but MRI can be more accurate for higher lesions on the sigmoid, the right colon, and small bowel. Additionally, ultrasound can’t detect signs of thoracic endometriosis or endometriosis in other non-pelvic locations.
- While imaging is a very useful tool for pre-op planning for excision surgery and may help the surgeon with a suspected diagnosis of endometriosis, it’s the patient history/symptoms that’s often the most important part of making a suspected diagnosis of the disease.
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.
But 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 surgeon 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 to slow the progression of it.”
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 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 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.
Laparoscopy with a pathology report is the only way to have a definitive (confirmed) diagnosis of endometriosis, but many gynecologists who are not skilled in recognizing the various visual appearances or locations of endometriosis may miss obvious signs of the disease during an exploratory surgery. This actually happened to me with my first laparoscopy! I was told I didn’t have endometriosis, but in reality, I did. That surgeon lacked the skills/experience to recognize endometriosis and incorrectly told me I didn’t have the disease.
Laparoscopy with a pathology report remains the only way to have a confirmed diagnosis of endometriosis, and the gold standard treatment of endometriosis continues to be excision surgery.
Endometriosis should be its own subspecialty within gynecology because general OBGYNS just can’t give patients the high level expert care that they need.
We need referrals to actual endometriosis centers where we can be informed on options like excision, hormonal suppression, diet and lifestyle, etc, and then we can work with the endometriosis expert to make an fully informed decision. But that isn’t what’s happening – many doctors tell patients they suspect endometriosis, then immediately place them on hormones or GnRh drugs (without any mention of the serious potential side effects of GnRh drugs). Patients stay on hormones for years without a referral to an expert or ever being told about excision surgery as an option, while their disease potentially progresses and/or their symptoms worsen.
For More Info
- Endometriosis: But your tests are all negative? – Post on Nancy’s Nook
- The visual appearance of endometriosis and its impact on our concepts of the disease – Article by world-renowned endometriosis excision surgeon and gynecologist, Dr. David B. Redwine, M.D.
- Why Every Single Medical Professional Needs to Know About Endometriosis – Blog post by Melissa from Eighty-Six the Endo.
- Diagnosis – A comprehensive overview on diagnosis on Nancy’s Nook. Info on ultrasound, MRI, bloodwork, surgery, etc.
- What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis – 2006 research article. Sadly, not much has changed today, 15 years later.
- Endometriosis inquiry shows little improvement in a decade – Summarizes info from the 2021 UK APPG inquiry which surveyed over 10,000 people with endometriosis.
- Perspective: Why Can’t Women with Endometriosis Get Diagnosed? By Aria Vyas
- Endometriosis: How advocacy, awareness and algorithms could shorten the long wait for diagnosis and treatment
Some Great Books
- Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery
- Pain and Prejudice: How the Medical System Ignores Women―And What We Can Do About It by Gabrielle Jackson
- Unwell Women: Misdiagnosis and Myth in a Man-Made World by Elinor Cleghorn
- BLEED: Destroying Myths and Misogyny in Endometriosis by Tracy Lindeman
- Good Girl, Bad Period.: Breaking the Silence on Misogyny and Gaslighting through the Lens of Endometriosis by Silvia Young
Related Podcast Episodes
- Ep 3 – 9 Tips for Better Medical Care
- Ep 44 – It’s Not in Your Head – Medicine’s Sex and Gender Bias. Part 1
- Ep 45 – Racial Bias in Healthcare
- Ep 46 – Why Science Knows Less About the Bodies of People Assigned Female at Birth
- Ep 48 – Why Is Pain Dismissed in People Assigned Female at Birth?
- Ep 50 – But Doctor, It’s Not Psychosomatic!
- Ep 78 – What Does Endometriosis Look Like And Why Does It Matter?