Media: Endometriosis Misinformation (Edited)
I am tired of feeling like literally screaming when I read how endometriosis is covered in the media. Yes, I said screaming.
Why do I feel like screaming? It is so very seldom that the topic of endometriosis is presented accurately in the media. The vast majority of the time that an article is written either about endometriosis (or that mentions it in passing), important elements get reported incorrectly. Such dissemination of misinformation hurts the endometriosis community. However, it also hurts everybody. It is a problem that the general public is repeatedly fed misinformation about endometriosis.
In some cases, the misinformation disseminated could increase patients’ chances of incorrectly assuming that symptoms mimicking endometriosis are caused by it… when, in fact, the symptoms might be caused by something else entirely. For example, an ovarian cancer patient misdiagnosed as having endometriosis could lose valuable time to get prompt treatment for her condition. That is why this news article makes me feel like screaming. Rather than educate readers, articles such as this add to the confusion about such universally agreed-upon matters as how endometriosis is diagnosed.
Let me back up a step. What got me so riled up? I received an email last night that prompted this post. Specifically, I received a Google Alert for the topic of “endometriosis”. This email contained multiple hyperlinks to stories in the media that mention endometriosis.
Please note that the quotation below is incorrect and is being mentioned here to draw attention to its inaccuracy. It pains me to even include this quote and I emphasize that I am pulling it directly from the media report I reference in this post.
Quote from The Intelligencer:
“A simple pelvic examination would have quickly pin-pointed the diagnosis, endometriosis”.
THE ABOVE QUOTE IS NOT ACCURATE.
A “simple pelvic examination” is not the method for diagnosing endometriosis.
Astonishingly, in an article entitled The doctors didn’t even examine me! by Dr. Gifford-Jones, the reader is led to believe that a “simple pelvic exam” is how endometriosis is diagnosed.
I posted the following on the site of The Intelligencer in response to this article (on the online Intelligencer story under comments):
As a patient who has lived with endometriosis for 27 years, I feel compelled to point out an inaccuracy in this column. This quote is incorrect:
“A simple pelvic examination would have quickly pin-pointed the diagnosis, endometriosis”.
As per the Endometriosis Association, “Diagnosis is considered uncertain until proven by laparoscopy, a minor surgical procedure done under anesthesia. A laparoscopy usually shows the location, size, and extent of the growths. This helps the doctor and patient make better treatment choices”.
This Intelligencer article came to my attention because it was picked up as a “Google Alert” for the topic of “endometriosis”. (That means many people are being exposed to the inaccurate info included in this article). So, I received an email from Google that linked me here.
The incorrect quote above immediately drew my attention because it is this type of misinformation in the media that has hurt so many endometriosis patients for so many years.
I hope that the Intellenger will print a retraction.
It saddens me that such misinformation is occurring in 2010. The typical endometriosis patient receives a diagnosis an average of 9.9 YEARS after the onset of symptoms.
Finally, in regard to the reference to ovarian cysts, some endometriomas are, in fact, large enough to be detected by ultrasound. However, as stated in the Endometriosis Association quote above (taken directly from their website), “diagnosis is considered uncertain until proven by laparoscopy”.
There are many different types of ovarian cysts. Some are utterly unrelated to endometriosis.
I would certainly hate for an ovarian cancer patient to be misdiagnosed as having endometriosis by a doctor who relied solely on an ultrasound rather than performing a laparoscopy to rule endometriosis in/out as the cause of ovarian cysts. I would also hate for readers of this article to get an incorrect impression about the proper use of ultrasound.
I think this article is irresponsible. Basic fact-checking about endometriosis (such as taking just moments to consult a site like the Endometriosis Association’s) would tell a reporter than it is NOT correct to state that “a simple pelvic exam would have quickly pin-pointed the diagnosis, endometriosis”. This statement is simply untrue.
Doctors can suspect endometriosis without having performed a laparoscopy to validate their suspicions. However, at this time laparoscopy is the definitive means for diagnosis. I find inaccurate medical articles such as this very disturbing.
By the way, if you have not yet signed the Create Endometriosis Awareness & Understanding online petition, it is up to 467 signatures. Anyone who supports endometriosis awareness and understanding can sign. It is not necessary to be an endometriosis patient to sign it. So, please ask others to sign it too.
I know many readers here have endometriosis (or know someone who does). If you are as troubled by the inaccuracy of the article in The Intelligencer as I am, I would encourage you to take just a moment to post a comment on the site of The Intelligencer with your feedback. A log-in is required to post a comment. I set mine up within approximately 60 seconds, give or take. All you need is to pick a screen name, a password, and to click on the confirmation link that Sun Media will instantly email you once you’ve registered. (I added an avatar and a link to my blog so readers of that article would have access to a site that does not spread misinformation about endometriosis, if they wish to read further about endometriosis but this is totally optional). Then, once you’re logged in to comment on The Intelligencer you will be able to provide your feedback to the article.
Every time the media reports misinformation about endometriosis, I make an effort to speak up and make the source media outlet aware of the misinformation. I believe it is imperative for people to speak up when they see such misinformation being reported in the media. The only way there will ever be improvement in how endometriosis is covered in the media is if people speak up when they see errors. I have read inaccurate reports related to endometriosis too many times. I can’t stand by and watch such misinformation get disseminated in the media and do nothing… say nothing. I feel I have an obligation to speak up when I see incorrect information about endometriosis in the media. If no one speaks up, the media will surely keep churning out articles like this that mislead readers.
I want the media to hit a bulls-eye when they write about endometriosis. I expect articles to be fact-checked before they are published. Am I expected too much for wanting the media to present FACTS about endometriosis?
Bear in mind that this article was distributed on a Google Alert for the topic “endometriosis”. So, many people will see this inaccurate article. The more people speak up about the incorrect information in this article, the better for all endometriosis patients. Frankly, each time misinformation on endometriosis is disseminated in the media it hurts the endometriosis community and potentially hurts all endometriosis patients. I personally believe this article warrants a retraction. If you agree, please contact The Intelligencer to request one. Contact information for The Intellenger/Sun Media is contained in the article hyperlink above.
Please join me in speaking up for endometriosis patients everywhere regarding endometriosis misinformation in the media. Please read the article above and consider leaving a comment on that site regarding the misinformation presented in the article. It takes moments to share your feedback.
Suffice it to say that I hope we can band together to spread FACTS about endometriosis so that societal intelligence about this very widespread condition can be increased. The more awareness we get for the FACTS about endometriosis, the more intelligent society will be about this condition… which experts estimate affects 89 million patients (and that is a conservative figure) worldwide.
EDITED 2/5/2010 at 6:03 pm:
Endochick mentioned writing a Letter to the Editor in addition to leaving a comment on the site for The Intelligencer. I just did so. Here is a quick summary of how I did it. It’s fast and easy.
I just sent my letter to the editor requesting a retraction of the article. I took the comment I had already posted, modified it slightly, clicked “Contact Us” at the bottom of the screen, clicked “Editorial”. This took me to a screen for contacting the editorial department. I sent my letter using this form to:
ATTN: Editor of The Intelligencer
The whole process probably took me 1-2 minutes. Again, I clicked “contact us” and then “editorial” from the bottom of the screen (from the link to the article that I included in this post).
Update from 2/6/2010 at 5:34 pm:
Astonishingly, The Intelligencer has closed comments on the article discussed in this post. Interestingly enough, I know of multiple people yesterday who either submitted comments (that went into moderation but never got published) OR attempted to submit comments but had some sort of difficulty doing so. So, four outraged endometriosis patients posted comments to that erroneous article and then The Intelligencer decided to close comments without processing ones that were submitted early yesterday? Wow!
If you haven’t written a letter to the editor, I encourage you to do so. Directions for doing so are above.
Edited again 2/7/2010 at 12:33 pm:
Following up on this link provided by Aviva (Canada Free Press: Bio on Dr. Gifford-Jones – aka Dr. Ken Walker), I Googled the author of the article and found this write-up:
If you read that last link, you’ll learn many things.
The one that got my attention the most is that he is a GYNECOLOGIST!
This second link says, among other things:
“As Gifford-Jones, he’s Canada’s best-known medical journalist. As Dr. Ken Walker, he’s a popular Toronto-based gynecologist”.
That’s right. The author of the article containing misinformation about endometriosis is a GYN!
Now, for those of you who have steam coming out of your ears right about now, there is good news. There is an email address listed for W. Gifford-Jones (aka Dr. Ken Walker):
I urge you to contact Dr. Gifford-Jones (aka Dr. Ken Walker) and let him know what you thought about his article (referenced in this post). The newspaper closed comments on the article. The four that made it through before comments were closed (mine included) were all from outraged endometriosis patients. (You can view the comments that did post beneath the article itself. See the article link earlier in the post).
I know of several people who have written letters to the editor and I know of no one who has received a response. Comments had been submitted to the article that went into moderation (while comments were still open) and were never published before the paper closed the article to comments.
Perhaps by contacting the author directly, we can let him know our concerns about the wording of the article. It is truly astonishing to me that a gynecologist wrote a piece claiming that a “simple pelvic exam” can diagnose endometriosis… among other flaws in the article. The way ultrasound was referenced in the article was misleading too.
This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.
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