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.

Our office is located on 5th Ave and 68th NY, NY.
You may call us at 212-988-1444 or have your case reviewed by clicking here.

<< Previous Article
New Medical Textbook Focusing Solely on Endometriosis, Now Available!
New Medical Textbook Focusing Solely on Endometriosis, Now Available!

Endometriosis – A Concise Practical Guide to Current Diagnosis and Treatment Recently, our founder Dr. Seckin, along with a number…

Read more >

Next Article >>
Latia's story: Excision surgery brings hope, after 20 years of suffering
Latia's story: Excision surgery brings hope, after 20 years of suffering

My name is Latia Lee. I am 37 years old and have suffered with “Killer Cramps” since I was 14.…

Read more >

Patient Reviews

Write a review
  • Megan Rafael Moreno

    I was in pain for 2 years. I was getting no answers, and because dr Goldstein and dr seckins were willing to see and treat me I'm finally feeling almost back to normal. They were very down to earth and helpful in my time of need. Dr Goldstein was easy to talk to and caring, she took care of me…

  • Nancy Costa

    Dr. Seckin is one of the best endometriosis surgeon. Every time I go to the office, he really listens to me and is always concerned about my issues. Dr Seckin's office staff are a delight and they always work with me. I feel I can leave everything to them and they will take care of it. Thank you to the…

  • Rebecca Black

    Fast forward 5 years to find out incidentally I had a failing kidney. My left kidney was only functioning at 18%. During this time, I was preparing all my documents to send to Dr. Seckin to review. However, with this new information I put everything on hold and went to a urologist. After a few months, no one could figure…

  • Monique Roberts

    I'll never stop praising Dr. Seckin and his team. He literally gave me back my life.

  • Erin Brehm

    I had a wonderful experience working with Dr. Seckin and his team before, during and after my surgery. I came to Dr. Seckin having already had laparoscopic surgery for endometriosis 5 years prior, with a different surgeon. My symptoms and pain had returned, making my life truly challenging and my menstrual cycle unbearable. Dr. Seckin was quick to validate my…

  • Anita Schillhorn

    I came to Dr. Seckin after years of dealing with endometriosis and doctors who didn't fully understand the disease. He quickly ascertained what needed to be done, laid out the options along with his recommendation and gave me the time to make the right decision for me. My surgery went without a hitch and I'm healing very well. He and…

  • Nicholette Sadé

    Dr. Seckin brought me back to life! I am now 3 weeks into my recovery after my laparoscopy surgery, and I feel like a new and improved woman! Being diagnosed with Endometriosis, then 25yrs old in 2015, and discovering the severity of my case being stage 4, made me devastated. Dr. Seckin's vast knowledge of the disease, sincere empathy, and…

  • Jason Curry

    My wife had her laparoscopic excision surgery to remove endometriosis with Dr. Seckin on Jan 30, 2014. She doesn't write online reviews so I'm writing this on her behalf. I accompanied her with each office visit she had. The staff--Lucy and Kim, are very friendly, warm and professional. Dr. Seckin was excellent in every capacity. He spent a lot of…

  • Liz Filippelli

    He is an awesome doctor who saved my daughters life from debilitating endometriosis..she knew instantly upon awaking from surgery that she was better..that wad May and no complaints only praises for Dr. Wonderful Seckin!!

  • Karen N

    I was diagnosed with Endometriosis at 19. I saw several Endometriosis "Specialists" since then, had a few laproscopic surgeries to "remove" the endometriosis and continued to be in pain. I had a hysterectomy in 2012 and was told this would stop the pain once and for all. No such luck! Tired of spending days in bed with a heating pad,…

  • Lauren Rodriguez

    I researched and found Dr. Seckin after dealing with years of doctors who couldn't help me or refused to go the extra mile for their patients. I have to say I am truly blessed to have found such a compassionate and talented doctor. He is exquisite with everything he does, and both his team at the office and surgical team…

  • Kellya Vespa

    Dr. Seckin is a very skilled surgeon. There are not many doctors like him that truly understand the effects of endometriosis. I am lucky to have found him. The staff is wonderful too.

  • Meg Connolly

    Dr. Seckin truly LOVES what he does and cares about his patients from the bottom of his heart. My life has already changed in 3 weeks and I couldn’t be more grateful. Should I ever need another operation for endometriosis, Dr. Seckin will be the one to do it. I recommend him to anyone I come across with similar problems…

  • Elisandra O

    Dr. Seckin is an amazing Doctor he is very compassionate, caring and he will be honest with you. He's been my doctor for 19yrs and I am so grateful to have someone taking care of me that knows what he is doing and knows the best way to treat each and every situation. I would definitely recommend him and his…