Are We Hot Or Not? A study rating Endometriosis Patients On Their Attractiveness Has Finally Been Retracted, 7 Years Too Late
Yes, you did read that correctly, there really was a study in 2013, that really rated whether or not patients with Endometriosis are hot or not and finally, after seven years of outcry, it has been retracted.
Endometriosis is a chronic, debilitating condition that impacts nearly 1.2 million people in the UK alone, and an estimated 276 million worldwide. It is a common inflammatory disease: tissue that is similar but not the same as the endometrium is found in areas around the body. The most common places include the ovaries, the fallopian tubes, the bowel and pelvic cavity. It can also be found on the bladder and bowel and in some cases, it is found in the lungs, skin, brain and diaphragm.
It is not just a painful period, with many patients experiencing chronic daily pelvic pain which impacts their bladder, bowel, sexual function and every aspect of their daily life. Symptoms can occur before your first period and persist well into menopause; the disease also impacts trans males and has been found in 16 cis males. The average delay between the onset of symptoms and diagnosis is between 7-10 years, so for nearly a decade most patients suffer in silence and, to this day, there is no known cause or cure. The current gold standard of treatment is excision surgery, which is the only way to effectively remove the lesions at the root. However, access to this surgery is a privilege, with your ability to undergo the surgery often depending on where you live or if you can afford to pay privately.
When you understand the background of this disease which can cause infertility, debilitating chronic pain and severe damage to vital organs, you’d expect there to be a slew of studies, trying to diligently research and investigate ways to help patients… not instead investigating if we are appealing to the male gaze.
The study attentively called, ‘Attractiveness of women with rectovaginal endometriosis: a case-control study,’ took place and was fully funded by the University of Milan, Italy in 2013. The sole purpose of the study was to ‘evaluate physical attractiveness in women with and without endometriosis.’ The unwitting patients, who did not give consent to be included in the study, had their attractiveness rated on their waist size, breast size and the age of their first sexual encounter. The authors have tried to defend it stating that this would give an idea of certain body types or characteristics which might be more susceptible to severe endometriosis. However, rating patients on their physical appearance and attractiveness fails to bring anything to medical research and only wastes valuable funding that could have gone into helping people with the disease.
For seven years advocacy groups and patients called out this study, urging it to be retracted, and it eventually was after outcry on Twitter. The fact that it took seven years - ironically the same time it takes for people to be diagnosed with the disease - shows how much patients are left out of the conversation about their own bodies and that ultimately the only thing worth evaluating is their appearance, not their chronic pain. It’s hard to believe a similar study would have been conducted on diabetes or crohn’s disease.
In August 2020, another new research paper came out, claiming to revolutionise the treatment of endometriosis… by downgrading it to a syndrome and further limiting access to excision surgery (currently the only way to effectively remove the disease). You can’t help but raise an eyebrow when the paper stated, ‘our aim is not to downplay the severity or importance of endometriosis’. Yet it then went on to do just that by discouraging surgery and downplaying the severity of the condition. The three authors, one who is based in the UK, all received external funding for the paper from pharmaceutical companies, including AbbVie who manufacture the controversial drug Lupron.
Again, on Twitter, when the authors shared the paper, many patients tweeted their concerns. One stated, ‘Why would you want to refocus away from surgery? The Endometriosis needs to be removed through excision…Don’t take away the only hope we have!’ Comments were left unanswered; the only retweets were of the surgeons complementing themselves on the completed study. Once again, the endo research echo chamber lives on.
The impact that these studies have on patients is huge. Without valuable research and funding independent from big pharma, vital milestones will not be achieved. Having an impartial research space which respects and listens to patients is not only key to help ensure that we reduce the long, despicable delay in diagnosis, but also so that we know the very real barriers which patients face which cause those delays - barriers and delays which have not changed since the 1980s. The real frustration and exhaustion comes from people like myself, who have lost chunks of their life to not knowing why they were in pain, who don’t want to see anyone else having to experience that hell, and want to ensure that steps are made to ensure that never happens. Awareness is key, but it has to be factual, impartial, and done with patients, not in spite of them.
Everyone with endometriosis should have a voice, and a say, as every story is important and holds so much value on how we can change the system for the next generation. As I start to enter my late twenties and think about what is in store for the next young generation coming up behind me, is it better? Is there currently a 19-year-old crying in agony in college? Is there a 23 old who has just dropped out of their dream job because they can’t stand the pain, and no one will help? I know there is: I speak with them on a daily basis. Studies and research into endometriosis hold so much value and hope, so when we are hit with sexist outcomes and suggestions to downplay the disease, the whole community feels a collective gut punch.
There really is the option to create so much change. I hope it won’t take another decade.
Written by Sarah Rose
Sarah Rose is a freelance writer from Belfast who writes about all things pelvic pain. She uses her Instagram platform mypelvicpain to share her journey with endometriosis and raise awareness around this condition and its impact on her life. Sarah’s sole aim is to help others and ensure that no one ever has to suffer in silence again.