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Fake News and the Endometriosis Community

Fake News and the Endometriosis Community

By Casey Berna

Fake news is a term that has been thrown around a lot in today’s political climate on both sides of the political spectrum. Everyone can agree that while many in the press strive to operate with the upmost integrity, sometimes the media can misrepresent situations that ultimately have a toxic impact on consumers. There are many factors that go into presenting information, including, but not limited to, the intended audience and the point of view of the author. Unfortunately, what will “sell” and get the most “hits” is one of the biggest factors considered in what gets published. The endometriosis patient population unfortunately becomes a victim to “fake news” time and time again with the help of journalists, celebrities and sometimes even misinformed medical professionals who are trying to spread awareness. By spreading myths and untruths, the intent to raise awareness regarding the disease can cause more harm than good.

There are some endometriosis advocates who have been passionately fighting these harmful misrepresentations for years. Just last week, longtime endometriosis educator and patient advocate, Heather Guidone, spotted and reported a recent Cosmopolitan magazine article that cited an old, debunked study saying: “50-The percentage that your risk of developing endometriosis can drop if you have orgasms during your period. The uterine contractions might help fend off the disorder.”

Feeling outraged? If you are reading this blog post, you most likely follow the Endometriosis Foundation of America on social media as well as other more reliable endometriosis sources. You already know that laparoscopic excision surgery by an expert is the gold standard treatment for removing endometriosis. You understand that the birth control pill, changing your diet and pelvic floor therapy are truly options to try and “fend off” the symptoms of endometriosis and manage the impact of this insidious disease.

While the endorphin release during orgasm may provide pain relief for a select few, as an educated patient, you know that orgasms will NOT “fend off” your disease. Let’s be honest, orgasms for many patients can be extremely painful. Dr. Sallie Sarrel, a pelvic floor physical therapist and advocate for women with endometriosis, explains that there are many reasons why pain may be associated with orgasms, “If the uterus is hindered by endometriosis related adhesions, when it contracts during an orgasm, a woman may have pain. Endometriosis patients are also prone to high tone and spasms in the pelvic floor. The muscular twitch during an orgasm may be extremely painful. Lastly, endometriosis patients often have associated nerve related issues and have nerve pain during orgasms.”

Sadly, myths and misrepresentations like these are printed constantly regarding endometriosis. Endometriosis often leaves patients feeling vulnerable, both physically and emotionally. Endometriosis patients can feel powerless at times. Patients are often victims of a lack of understanding regarding the disease, leading to a delay of diagnosis, ineffective and sometimes harmful treatments and longtime invalidation of their experiences. This lack of understanding, coupled with the intense pain and despair that comes with endometriosis, can make patients feel desperate. They look for anything that can help them feel better.
Myths and misrepresentations about the disease such as the one printed in Cosmopolitan magazine further victimizes patients and may contribute to them making decisions that are not in their best interest. Dr. Tamer Seckin, co-founder of the Endometriosis Foundation of America and expert endometriosis excision surgeon, states, “Patients are vulnerable to exploitation due to an overall lack of education and societal understanding of endometriosis. By citing an outdated and debunked study, Cosmopolitan pretends to know answers to medical questions that are still being researched. One day we hope to know how to prevent patients from ever developing endometriosis, but what we do know is advocating that patients have sex during their periods to stop from getting endometriosis is undeniably false information.” Journalists wouldn’t write that only eating doughnuts can “fend off” diabetes or that merely putting coconut oil on your skin at the beach “fends off” skin cancer. That would be irresponsible. Yet, there continue to be countless number of articles with false endometriosis information available for patient consumption.

While, some outrage needs to be directed at the journalists and celebrities spreading this misinformation, the patient community also needs to hold the medical community responsible for these fallacies as well. Celebrities and journalists are getting information from misinformed doctors or websites that are seen as respectable sources of information. Some of the top medical institutions in the nation offer incredible, forward thinking care regarding many diseases, but are woefully missing the mark on endometriosis. Yet, doctors from these institutions are seen as experts in endometriosis and the information their websites offer are seen as reliable. In addition to the online miseducation, every day patients are being mistreated and misdiagnosed in medical offices around the nation and around the world. A change needs to happen so that the most vulnerable in our community are protected and treated with the care they deserve.

Casey Berna is a patient of Dr. Seckin’s and an endometriosis and infertility counselor and advocate. To learn more about her story and her practice go to www.CaseyBerna.com.