I typically don’t do this, and i’m not going to make a habit of it, but I feel strongly that this needs to be addressed. I’m calling out CBC News on an article i’ve just found about endometriosis.
I’m not out to bash the writer of the article, or the whole network, or any of the websites i’ve mentioned in this post, but I have to say that I am INCREDIBLY disappointed.
I was happy to have found the article at first, because I rarely see news content in regards to endometriosis. I’ve found it next to impossible to find webpages, support, research, experts, fundraising pages, etc. which are Canadian. I think i’ve found two that I don’t hate. So this was meant to be a double whammy for me, a news article on endometriosis AND it’s Canadian?!
The article was published in March 2019 and focuses on a couple stories of women with endometriosis and the supportive community that’s been created. I love that! I am ecstatic about a Canadian news network running stories like this because that is exactly what we need to happen!
What I take issue with is the misinformation given in the article in regards to the definition of endometriosis.
I won’t name the author, ill link the article here and you can go check it out for yourself if you’d like. But I have to say that i’m very disappointed in the apparent lack of research into endometriosis for the article. I’m also disappointed in the network for not-fact checking before releasing something as important as this. However, at the end of the day, it is the journalists job to ensure that the information they are submitting is correct and up to date as much as possible, so unfortunately I do have to place the bulk of the blame onto the author in this situation.
The article begins on a positive note, sharing the story of a woman with endometriosis and her diagnostic story. But very quickly my excitement turned to, well, a little bit of rage. The image below is a screen shot taken from the article:
There’s some obvious good points here. “Women feel isolated and dismissed” (a quote from Kristina Kasparian, the main interviewee of the article) is absolutely the truth. I applaud the inclusion of Kasparian’s symptoms and her story in the article, and I applaud her for sharing it. The issue lies in the definition of endometriosis given by the author – no doubt something they used because of outdated information.
“Endometriosis is a condition where the lining of the uterus grows outside of the uterus, instead of inside. It is often characterized by severe pain and infertility.” Firstly, though not technically incorrect, I dislike the inclusion of “infertility” as a characterization of the disease. While it’s true that endometriosis CAN cause infertility, and IS in fact a leading cause of it, using infertility as a key characterization of endometriosis is something that I disagree with because of how blinding that word can be.
What I mean by this is: people will hear/read the words “infertility” and “endometriosis” in the same sentence and permanently link the two together. I myself thought that having endometriosis meant I would definitely be infertile when I was first told that it was found during my 2016 appendectomy. Since then, a great number of people have said to me “endometriosis… that means you can’t have kids right?”. That’s not necessarily the case, and people thinking that it is the case is exactly why I disagree with including “infertility” in a general characterization of endometriosis.
However, the biggie here is this: “endometriosis is a condition where the lining of the uterus grows outside of the uterus, instead of on the inside”. This is incorrect, and another thing that I am guilty of thinking early on.
Endometriosis receives its name from “endometrium”, the proper name for the uterine lining, an unfortunate naming that I can only assume is based on old information which states that the tissue involved with endometriosis IS the same kind of tissue as the endometrium. In truth, endometriosis is not the actual endometrium growing outside of the uterus, but tissue SIMILAR to endometrial tissue, which responds to the hormonal changes that occur throughout the reproductive cycle. It is not retrograde mensuration, it is not true endometrial tissue, and it is not “period blood” leaking into your abdominal cavity somehow.
The Johns Hopkins Medicine health page on endometriosis provides a more accurate definition of endometriosis, calling it endometrial-type tissue. Another page from the Endometriosis Association of Ireland has a short video about endometriosis, which includes the true definition and some other facts on the condition. You can watch the video bellow (I love it, it’s so freakin cute!).
The CBC article includes a video as well, however it, like the article itself, uses an incorrect definition of endometriosis, stating that “it occurs when the lining of the uterus grows in the wrong place” and goes on to say “that tissue eventually breaks down, like with regular mensuration, but the blood has no place to go.” You can watch the CBC video here.
The interesting thing about the CBC article is that it’s not alone. There are other articles like it out there, and half of the definitions of endometriosis which appear on Google contain the outdated information that names endometriosis as true endometrial tissue. However, looks can be deceiving, and it causes me to wonder about just how much research went into the CBC article and other articles like it.
In the case of the endometriosis page for WomensHealth.gov, the image below is what’s seen in a general Google search of endometriosis. As you can see, the preview for the site, apparently from April 1st 2019 (maybe it’s an April Fools joke?), states that “endometriosis happens when the lining of the uterus (womb) grows outside of the uterus…”
However, if you click on the site to visit the WomensHealth.gov endometriosis page, you see this:
Similarly, this is the preview for the endometriosis page of healthline.com:
While this is what is on the actual healthline.com website if you click the Google link:
Now this one is a little odd, because while the healthline.com page does indeed contain the proper definition with the use of the word “similar” in regards to the tissue, it also contains the incorrect definition directly under it. Which is what we see appear in the Google search. I’ll chalk this up to a miss during the pages last editing process. We are all human, it happens.
But it’s weird to see how often it’s apparently happening. Websites meant to help and educate people are using outdated, or mixed, information, adding to the masses of confused individuals – not excluding sufferers of endometriosis themselves. If I were newly diagnosed, a young lass who likely learned nothing about endometriosis in school, I would take to Google to find out about my condition only to enter an online world just as confusing as real life.
Another example of a website which hosts the wrong definition of endometriosis (among other things) is WebMD. In this case, the site has a bit of a reputation for not always having the most up to date information, and commonly convincing teenagers that they probably have cancer when their throat hurts. However, it is a popular site nonetheless and can still be a beneficial learning tool. The article i’m exhibiting here is actually a comparison article about endometriosis VS. adenomyosis – another medical condition which is in dire need of attention. This is the Google search for endometriosis’ result:
And this is the actual web page:
Once again we see that the incorrect definition of endometriosis is used and has not been updated. In truth, I do not know if the definition given for adenomyosis is accurate or not because I have not done much research into it -yet.
This baffles me.
And it isn’t the outdated definitions on the previews or the webpages themselves that baffles me, at least, not entirely; it’s the fact that the CBC article and others like it don’t seem to be trying very hard at relaying the proper information. I understand human error, it does happen (apparently repeatedly and regarding the same topic), but I can’t fathom working for a big news network like CBC, running a story about a medical condition and then attaching it to the stories of real people, and getting it wrong.
What baffles me, is that it seems plausible that the research into endometriosis may have been done by a quick Google search and regurgitation of the first definition that popped up. Because, clearly, some of the previews to the webpage still display the outdated information, while clicking the actual link and visiting the page displays the correct information – in some cases. Not to mention the other pages that exist and display up to date information such as: the Endometriosis Association of Ireland’s endometriosis page, Endometriosis.org, helloclue.com, endometriosis UK, the Endometriosis Foundation of America, Endometriosis New Zealand, Endometriosis Australia, The Endometriosis Network Canada … need i go on?
While there is a plethora of websites and articles that are in dire need of a revamp in order to include the up to date information, there are also a great number of easily found sites that host the proper information. And in some cases, all that’s needed to find the proper definition is a quick click on the actual link instead of a glance at the Google preview. The accurate sites coupled with the accurate telling of stories from real-life sufferers of endometriosis should leave very little room for error, and certainly should not result in a nation-wide news network running a story containing an incorrect definition of a severe, life altering, medical condition.
I’m certain others would agree.
It is articles such as this, and the outdated websites that back them up, that sets us back.
Endometriosis is under-researched and often misunderstood. Networks like the CBC have an enormous impact on the general public because of their long reach, and it is their responsibility to ensure that the information they put out to the public is correct and as up to date as possible. Circulating misinformation about conditions such as endometriosis is one of the main problems that our “endo community” faces.
Misinformation and under-education go hand in hand. The way I see it, we won’t see an increase in research, a reduction in diagnosis time, or an improvement on treatments available until these key issues are rectified.
I am truly disappointed. This CBC article and accompanying video had the potential to be amazing publicity for endometriosis, sharing the true stories of real people with the disease and the community that’s been created because of it. Instead, we have yet another source of misinformation out there in the world. An opportunity for something great, unnecessarily shadowed by something as simple as an incorrect definition.
The Blog of Erika 