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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 symptoms, urological symptoms, full body pain, joint pain, fatigue, lung collapses, shoulder pain, or a myriad of 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 made a separate page on common myths that doctors tell patients.
Scans cannot rule out endometriosis, meaning that you can still have endometriosis even with a negative scan. Not all forms of endometriosis can be seen on scans. Superficial endometriosis typically 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.
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.
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 about Misogyny in Medicine (which delays our endometriosis diagnosis)
- Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery
- 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?