Remember, this is educational information only and not medical advice (and I am not a doctor nor an expert on endo). Always check with your qualified medical professional before making any changes to your treatment plan.
Delay in Diagnosis
About 1 in 10 people assigned female at birth have endometriosis. In 2021, the WHO estimated that number to be more than 190 million people worldwide (of all races, nationalities, and gender identities). 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.
Due to lack of experience/skill, doctors may not recognize the suggestion of its presence on scans such as 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. Additionally, 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 at the other organs in the pelvic cavity like the bowel, bladder, as well as at the relationship/movement between the pelvic organs.
The expertise the medical professional doing the ultrasound or MRI has with endometriosis is vital. Doctors may see a negative scan (or one that they think is negative due to their inexperience) and tell the patient they don’t have endometriosis. But negative scans can’t rule out endometriosis – a person can still have it even if the scans are negative. Also, even the best (or self-proclaimed “best”) ultrasound or MRI experts in the world cannot rule out endometriosis using scans.
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 on my first laparoscopy!
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 point out that some prominent endometriosis specialists have criticized these new guidelines which reflect a growing movement towards a clinical (assumed) diagnosis and subsequent medical suppression of unconfirmed endometriosis. This includes a push to use medications like Lupron to diagnosis endometriosis. Some patients are told (in fact my gynecologist told me this): “There are changing the diagnostic criteria for endometriosis, and if your pain improves on the drug, then you have endometriosis.” But this does not prove that a person has endometriosis – there are a number of reasons as to why a person could see symptom improvement in a low estrogen state.
Laparoscopy remains the only way to have a confirmed diagnosis of endometriosis, and the gold standard treatment of endometriosis continues to be excision surgery. While not everyone wants surgery, I agree with the experts in the field who believe that a push away from diagnostic laparoscopy isn’t the right direction for endometriosis. The guidelines should state that general OBGYNs immediately refer patients to an actual endometriosis specialist when endometriosis is suspected, instead of encouraging these non-experts in endometriosis to “diagnose” and “treat” the disease via imaging and hormonal suppression.
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 drugs like Lupron (without any mention of the serious potential side effects). 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.
Unfortunately, shortly after the ESHRE guidelines were released, we already saw negative consequences of the new guidelines. One article called Updated endometriosis guidelines emphasize less laparoscopy, more hormone therapy (by Heidi Splete, published in MDedge OBGYN) stated “Notably, laparoscopy is no longer recommended as the diagnostic gold standard, and should be used only in patients with negative imaging for whom empirical treatment was unsuccessful.” (Empirical treatment is hormonal suppression.) This interpretation is different from the actual guidelines which stated that diagnostic laparoscopy “is now only recommended in patients with negative imaging results and/or where empirical treatment was unsuccessful or inappropriate.” We are already seeing that after the release of these guidelines, even more barriers are being placed in front of the patient trying to access excision surgery and that the hormones are being recommended as the first option for treatment, when the truth is that the patient should be offered by an expert all the options available from day one.
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
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?