February 9, 2016 — From time to time, some celebrities and public figures will open up in the media to reveal their struggles with endometriosis. While it can be validating for some people to see personalities like Padma Lakshmi (arguably the most outspoken and high profile figure to begin speaking openly about her struggles many years ago) discuss endometriosis, the ensuing press coverage around their stories is typically rife with misinformation and gross inaccuracies, which in turn get shared in perpetuity because of the high profile personality attached to the feature.
Articles and books featuring the stories of those who have come forth to talk about their experiences with endometriosis such as Susan Sarandon, Jamie King, Kirsten Storms, Halsey, Stephanie March, Daisy Ridley, Pamela Anderson, Cyndi Lauper, Tia Mowry, Jillian Michaels, Julianne Hough and many, many others – even Marilyn Monroe and Hillary Clinton – all had disease inaccuracies in common when the articles were run (sometimes through no fault of the profiled subject who was merely sharing her story, but as a result of poor fact gathering by the authors who cover them). The situation is further compounded when certain organizations and key leaders within the endometriosis community cosign the misinformation with erroneous “facts” of their own. One need only check a news source or social media feed on the disease to see the far-reaching fallout. Unfortunately, this is the kind of awareness that endometriosis does not need more of, and we must insist on better. The moment an article begins framing endometriosis as a ‘hard to diagnose’ illness affecting older women, characterized by normal endometrium merely implanted elsewhere and growing like weeds by means of ‘backwards periods,’ easily treated by drug therapy, hysterectomy or non-excisional surgery, the author has ceased to be informative – and is in fact doing harm by publishing such statements.
Endometriosis is not a simple disease nor hard to diagnose, though diagnosis is considered uncertain until surgery is performed. The disease should be treated at the time of diagnosis – by the hands of someone who is an expert on endometriosis. To be certain, this is not a universal indictment of all media nor of any public figure who chooses bravely to share their endometriosis story. However, this type of feature all too often goes ‘viral’ and media transmits the wrong messaging about the disease; thus we owe it to the global endometriosis community – patients, our dedicated colleagues, providers and researchers alike – to oppose the damaging information contained within such articles.
Unlike The Guardian, which published an incredible, well-researched 8-part series on endometriosis recently, most media gets it wrong time and again – serving only to further increase delayed diagnoses, contribute to poor information systems surrounding the disease, uphold deficient treatment options, and result in isolation and lack of support for those suffering. Enter CNN and their latest article covering Lena Dunham’s announcement that she would be “taking time off to rest” because of her struggles with the disease.
Predictably, CNN’s widespread feature posted both on their site as well as many social media outlets contained erroneous, outdated information on endometriosis, sparking immediate backlash from countless sufferers (all far more educated on their disease than the sources behind CNN’s article). We would be remiss if we did not also respond on behalf of our patients and those struggling with endometriosis, and have shared a copy of our response posted to the producers below.
Updated 2/13/16: as of this writing, countless responses have spiraled out across social media; CNN has yet to respond to any – however, they did make subtle changes in their article. Instead of ‘absolute cure,’ the statement now reads ‘hysterectomy may be the only cure’ – still incorrect. Sampson’s Theory is also still cited, as are the other areas of debate we responded to. Unfortunately, as of this writing, the same information found in CNN’s article now also appears in over 150,000 subsequent media/news articles and videos – including a viral feature on Good Morning America, further contributing to the spread of misinformation. Updated 6/15/16: while no corrections were ever made to this specific article, Ms. Dunham later acknowledged that her statement in a video she widely shared, in which she said “Lupron is the same as surgery,” was not entirely accurate.
Sent to CNN and publicly posted on February 9, 2016 — This entire article is straight out of the Old Wives’ Tale playbook. An opportunity to share helpful information with a broad cross section of society has again been squandered by media that remains too irresponsible to undertake actual research required to report authoritatively on the disease, instead opting for the superficial “first five hits on Google” approach. The legacy of misinformation enshrouding endometriosis unfortunately continues to be shared in perpetuity by sources like this – and even from well-meaning, well-respected providers to patients, from medical educators to next-generation healthcare professionals, from health publishers to media, from parents to children, from generation to generation; and even from some of the very organizations founded to advocate for the disease. The enduring lack of awareness at every level of society continues to undermine endometriosis, despite its status as a true community health crisis. Misinformation remains ubiquitous, pervading the media, healthcare community and general public alike – and once again, fails the individual with the disease.
The statement that “[E]ndometriosis [is] a condition most common in women in their 30s and 40s” is erroneous at best and dangerously irresponsible at worst, hinting that symptoms in youth should be ignored. In fact, as many as 70% of teens/adolescents experience symptoms early in life and even before onset of menstruation – yet the outdated notion that endometriosis cannot affect young patients leads to postponed diagnosis for several years – 30s, 40s – by which time ‘destructive lesions have affected the tubo-ovarian structures and severely compromised fecundability.’ [Brosen et al.] See also http://endometriosis.org/news/opinion/albee-is-endometriosis-all-in-your-head.
Re: “Most people think that when women have a period, a few of these cells travel through the fallopian tubes into the abdomen and then they end up implanting where they shouldn’t be” – “Most people” think that because it’s largely what the press and those who lack knowledge about the disease continue to perpetuate. However, despite propagation of this premise by certain high profile endo organizations and others concerned with the disease, endometriosis is not simply bits of rogue, normal endometrium implanted via backflow periods, scattering wildly about the body like weeds. Long gone are the days of Sampson. Normal endometrium is profoundly, histologically different from the functional glands and stroma that comprise the disease, and while it somewhat resembles the tissue, it is not the same. This outdated, widely-touted notion continues to keep endometriosis mired needlessly in – and excuses – delayed diagnoses, oft-needless hysterectomy, poor surgical treatments, ineffective medical suppressives and wholly deficient support of individuals with the disease. See also http://www.ncbi.nlm.nih.gov/pubmed/23721717.
Re: “It can cause bowel problems, diarrhea, and cramping” – and infertility, painful sex, pregnancy loss, bladder pain, lower back/leg pain, organ dysfunction, crippling fatigue, debilitating periods, chronic pelvic pain, collapsed lung in the cases of pleural endometriosis, an increased risk of comorbid conditions…the list goes on. Endometriosis is not just simply painful periods with transient minor symptoms. See also http://www.ncbi.nlm.nih.gov/pubmed/23847114.
While it is true some may not even be aware they have the disease, such is the exception vs. rule. In contrast, most have tirelessly sought a diagnosis for more than a decade across as many as 5 or more physicians before someone took them seriously and listened to, rather than dismissed, their narrative. The problem does not lie in symptom presentation – it lies in the fact that most are not listened to by their providers/loved ones when they do present with symptoms. See also http://www.menstruationresearch.org/2016/03/03/fighting-for-endometriosis-awareness-in-a-culture-of-menstrual-misinformation/.
It is obvious those consulted for this article do not have the benefit of widespread exposure to the global endometriosis community and the 176 million individuals struggling with the disease. Those of us who do, know that a great proportion of individuals living with endometriosis indicate that “significant disease-related affects interfere with their daily lives” and that their pain is often “incapacitating.” [Fourquet et al.] Endometriosis is a *major* public health problem affecting every single aspect of nearly 200 million lives (and costs society billions annually), not just a “small group” of some individuals in pain.
Re: “[T]he only absolute cure, said Sullivan, is a hysterectomy.” – This egregious statement and the outdated mindset which supports it are responsible for countless, unnecessary hysterectomies. Though hysterectomy does have a place in treatment for select cases, endometriosis is not “cured” by the procedure. Abundant data supports the fact that “endometriosis will be found…in a significant number of women with chronic pelvic pain status post hysterectomy with or without BSO, especially if the woman has a positive history of endometriosis.” [Nezhat et al.] Worse; an individual may read articles such as this and request a hysterectomy when other conservative approaches would be more successful. We must put an end to this irresponsible, dangerous myth, along with the notions that hormone/drug therapy, pregnancy, ‘rest’ and other such ‘treatments’ are somehow curative. In fact, most patients will need complex, multidisciplinary (excisional) surgery combined with adaptation of lifestyle changes – yet few are guided towards Laparoscopic Excision (LAPEX) surgery by their providers and remain unaware of other non-invasive, adjuncts such as physical therapy, nutritional approaches and alternatives that may help when combined with quality surgical treatment. Despite the increased challenges presented by meticulous and thorough dissection of disease, complete excision is possible in most cases and offers significant improvement in sexual functioning, quality of life and pain to many individuals, including in those with deeply infiltrating/fibrotic disease. Superficial surgery and medical treatment, however, will undoubtedly result in the continued pain, symptoms, and vicious cycle of ongoing, failed superficial surgical + hormonal suppressive approaches that are characteristic of the disease.
As we have stated before, the conversation about the physical, conceptual and political facets of endometriosis is limitless – but making the difference starts with all of us. In our work, in our conversations, in our presence in society at large, among our healthcare providers – and particularly among our media which has the capacity to help so many individuals who may be suffering silently. The global endometriosis community deserves nothing less. Truly, endometriosis is a key public health initiative needing further promotion, understanding, research, empathy and our united voices – not superficial click bait using the latest “It Girl” to spread more misinformation and inaccuracies to readers.