Dear Grey’s Anatomy: Your Endometriosis Info Needs Updating
Please issue a correction of the endo misinformation on major news outlets as well as an apology to the endometriosis community.
While an apology might seem drastic, once you read this article (which is only a sliver of the long history behind how this disease is mired in misinformation), you will understand that blasting incorrect facts about the disease on public TV viewed by millions does more harm than help to the 190 million people worldwide with endometriosis (endo).
I understand you are a TV drama, but if you are going to use the name of a real illness, then at the bare minimum, you need to get the definition of the illness right. While this underfunded, under-researched disease needs awareness, it needs CORRECT awareness.
I am a longtime fan. I’ve seen every episode of your 18 seasons at least twice, and season 1 at least six times. I love how you address social issues on your show, so I know that’s important to you. As part of the endo community, we’re asking you to please address the false information given on season 18 episode 10 about endometriosis.
You didn’t know your information was incorrect, but now that you will upon finishing this article, please use your platform, which is viewed and respected by millions, to help be a leader in changing outdated misinformation throughout the medical community! You have the ability to make a huge impact. The Endometriosis community will be anxiously awaiting this change².
First, here’s what was great about the episode:
- Representation matters. You had a person of color with endo. Endo has been falsely seen as a “white woman’s disease” (which it’s not) which has led to delay in diagnosis for millions of POC. Too many doctors still have “being white” as a risk factor on their inaccurate websites.
- You gave airtime to a horrible disease that 190 million people have (WHO stats 2021), but that a 2020 survey¹ found that 54% of people don’t know what it is.
- You addressed the fact that research is primarily done on diseases that affect people assigned male at birth and that there is little research on people assigned female at birth and diseases that affect them.
- Thank you for taking the patient’s symptoms seriously and not dismissing painful periods and painful sex as “normal”, “anxiety” or “a low pain tolerance”.
Here’s what needs to be corrected at the bare minimum:
The definition — Endometriosis is NOT cells that line the inside of the uterus.
That seems like a tiny oversight, but the distinction is vital. Fortunately, we have now confirmed via substantial research that endometriosis tissue is not the same as native-endometrial tissue.²
The most current, accurate definition utilized is, “Endometriosis is a systemic, inflammatory disease characterized by the presence of endometrial-like tissue found in extrauterine sites.” (Kennedy S. et al., 2005; Klemm et al., 2018; Saunders et al., 2021)²
Why does the correct definition matter?
“Propagation of outdated myths and misinformation, and the continued research positioning of endometriosis as normal endometrium, keeps the disease mired in outdated concepts, hysterectomy, failed drug therapy and incomplete treatment.” ³
“This ongoing misconception is responsible for countless, needless hysterectomies performed each year — indeed, nearly half of the 400,000+ hysterectomies performed in the United States annually are the result of endometriosis. Similarly, “pregnancy” and/or “menopause” are often touted as curative, but such claims are equally untrue.”³
Not to mention the false claims around GnRh agonists (drugs that put people into medical menopause) that they will “dry up” and “clean up” the disease. Not only is this not true, but these drugs can have serious short- and long-term side effects that the patient often isn’t informed of. Many patients stay on the medications even though they find them intolerable because they were incorrectly told by their doctor that it treats their disease, when it fact it is only for symptom management.
Endometriosis was named by the NHS as one of the top 20 most painful conditions a person can have.⁶ For many, the disease ravages every single aspect of their life — from eating, sleeping, showering, socializing, careers, relationships, fertility, relaxing, using the bathroom, and many more normal life activities that people typically take for granted. It’s as if your life gets swallowed up by endometriosis. This can negatively impact mental health, self-worth, quality of life, and more, and lead to ongoing trauma and grief.
Imagine having a disease which began causing you incapacitating symptoms in your teens, that took 16 years to diagnose, and once diagnosed, every single “treatment” recommended by your doctor was based on an outdated myth that endo is something it’s not (the endometrium). Except you didn’t know that because you didn’t yet know how much misinformation there is on this disease, so you went through with life-altering, irreversible treatments at the recommendation of various misinformed doctors, only later to find out that these treatments actually did nothing at all for your disease. You continue to have relentless, intolerable endo symptoms, but now on top of that, you are dealing with the consequences of “treatments” you never should have been offered in the first place. This is the reality for millions of us.
The definition matters. That’s why we advocates shout it every chance we get.
Also in need of updating — the appearance of endo.
Your doctors said: “What do the classic lesions of endometriosis look like?”
“Most commonly they have a blue-black appearance.”
Endometriosis can be clear, red, white, black, blue, gray, yellow. In younger patients in their teens and early twenties, colors like clear and red may be more common than black. Yet many early studies were done on patients in their mid-to-late 30s when the black powder-burn color is more common.⁴
Why do endo colors matter?
Many clinicians are wrongly taught that endo presents as a “black powder-burn.” Yet 1 study of 137 patients found that 40% of patients had no black lesions, and 25% had black lesions plus more colors. A study found that in at least 2/3 of patients, endo has a visual appearance that many doctors haven’t been trained to recognize.⁴
This leads to surgeons missing endo as they can’t recognize it, and then informing patients that they don’t have endo when they actually do, further delaying diagnosis and treatment. It happened to me, and millions of others.
Let’s talk about correct information around treatment.
You doctors said: “The good thing is that it is treatable. We’ll schedule the diagnostic surgery and if endometriosis is present, we will do what we can to try and remove it. Let’s see if we can get it done today.”
I’m sorry to say I laughed out loud when I heard that. Endo is an incurable disease, and while there is a gold standard treatment that improves quality of life for many who have it, it’s notoriously hard to access. Endometriosis EXCISION surgery (note the distinction between excision and ablation, which you didn’t mention) is considered the most difficult gynecological surgery.⁵
Because excision is so challenging, it’s important to receive treatment from an experienced surgeon who sees a high volume of endo patients. It’s estimated there are only about 300 surgeons worldwide who can properly excise endometriosis from all locations in the body. Excision is inaccessible for the majority of patients due to lack of surgeons, location, cost, insurance hurdles, and more.
While your doctors on GA are excellent, they are NOT excision surgeons. Your show implied that any gynecologist can do endo surgery. This belief delays access to EXPERT treatment, and leads to missed disease, complications, and prolonged suffering of the patient.
Grey’s Anatomy, you are one of the most popular and well-respected TV shows watched by millions worldwide. So many people only have access to information on TV, which is why it’s vital to spread correct awareness of a disease that affect 190 million people.
I know that you care about social issues and that you want to have integrity with your medical information. The endometriosis community hopes that you will listen to our experience and expertise, and publicly address the endo misinformation on your show, due to the ripple effect it absolutely has on people with endometriosis. Yes, you are a TV drama (and one that I love at that!) but getting the definition right — as the bare minimum — is the least you can do, and is a huge and crucial step for our endo community to move forward to receive better care for this devastating illness.⁶
Endometriosis Community: You can share this article on Instagram via the post I made under @in16yearsofendo here: https://www.instagram.com/p/CasRLDBuR52/
Sources:
(1) APPG on Endometriosis Inquiry Report 2020: The research was conducted in Jan-Mar 2020, by Censuswide, with a nationally representative sample of 2,000 adults (aged 16+) on behalf of Endometriosis UK.
(2) Taken from a community resource for correcting the definition of endo: https://endogirlblog.com/defining-endometriosis/
(3) Endometriosis: a Complex Disease. From the Center for Endometriosis Care website, renowned leaders in the field of endo.
https://centerforendo.com/endometriosis-understanding-a-complex-disease
(4) The visual appearance of endometriosis and its impact on our concepts of the disease, by Dr David Redwine, excision surgery and renowned endo expert.
http://endopaedia.info/origin32.html
(5) “Why is endometriosis surgery so challenging?” by Dr David Redwine, excision surgery and renowned endo expert.
http://endopaedia.info/treatment34.html
(6) “Osborne, Hannah. “Here Are 20 of the Most Painful Health Conditions You Can Get.” Newsweek, 10 October 2018
https://www.newsweek.com/20-most-painful-conditions-nhs-1191081”
Want to learn about endometriosis from a credible source?
Endometriosis: a Complex Disease. From the Center for Endometriosis Care website, renowned leaders in the field of endo.
https://centerforendo.com/endometriosis-understanding-a-complex-disease
