Picture me, age 12. It’s the ’90s, and I am the kid who owns no cool clothes. Flat-chested as a pancake, I wear a training-bra under a Bon Jovi T-shirt, paired with baggy shorts. It is around that time that I learn a key life-lesson: If you are attractive, everyone will know your name. From then on I will hear, “You’d be prettier if only you’d …” ad infinitum.

As an adult, things are better. Mostly because I don’t care about looking good for others. Yet, the world still seems determined to tell me otherwise. Whether it’s adverts highlighting the importance of a “summer body” or social media amplifying the value of screwed-up beauty standards thanks to Kardashian-level cosmetic surgery, the pressure is on. And while I can tell myself that what counts is on the inside, sometimes it all becomes slightly personal.

For years, the University of Milan invested money and resources researching whether endometriosis makes women more physically attractive. They concluded the following:
 “Women with rectovaginal endometriosis were judged to be more attractive than those in the two control groups (…) they had a leaner silhouette, larger breasts, and an earlier coitarche.”

The participating women never gave their consent to be judged for their attractiveness and were unaware this was happening. As an endometriosis patient, I am both puzzled and offended.

How are endometriosis patients any healthier, or happier, through its findings? Was this study done so men could avoid being seduced by an overtly attractive endometriosis patient? After all, we can be so sneaky, with our larger boobs, treacherous curves, and early sexual experiences.

I can joke all I want, roll my eyes in dismay, yet endometriosis still has no cure.

Instead, all we have are treatments that aren’t quite so because they barely “treat” anything. All it takes is browsing an endometriosis forum or attending a support group to find women exhausted from living in chronic pain, struggling to have a career or to care for their families. Daily, doctors dismiss young girls through myths like “You’re too young to have endometriosis,” telling them pregnancy will make their symptoms go away.

While physical traits may hold some answers regarding the severity of this disease, this study focused on attractiveness: a woman’s sexual value. Why did it take almost eight years for this study to be taken down? How can someone happily put aside the severity of endometriosis symptoms and focus on a woman’s physique?

Because for many, the value of women still lies in their attractiveness.

So much has changed for the better. There is ongoing research into conditions such as endometriosis and there are improvements in women’s rights worldwide … but so much is still lacking.

When organizations spend money and time on determining the attractiveness of patients suffering an excruciatingly painful disease, it not only shocks me, it breaks my heart. Endometriosis ruins lives through countless radical surgeries, random infertility, and extreme chronic pain. It can damage our mental health beyond repair.

I guess this is why I write my columns and advocate for this disease. It is why I appear as a guest on podcasts even when I hate the sound of my own voice. I know I can’t change what has happened to me, but I can challenge and shape what happens to the countless youngsters dealing with endometriosis. I am happy to wake up, put on my makeup, and be vocal about the cruelty of this illness.

Yet, it can all be very deflating.

There is a Madonna lyric that expresses the particular roller coaster of emotions that comes with being a woman:

“Do you know what it feels like for a girl, do you know what it feels like in this world, for a girl?”

We are called out for the way we look, harassed since puberty, valued or dismissed for the size of our breasts and the smoothness of our skin. Research like the one funded by the University of Milan is a reminder that we live in a man’s world.

Endometriosis patients are exhausted because a lot of us are women who have been patronized and dismissed since we can remember. The fact that this study has been retracted means very little. We deserve more, and we want it now.

***

Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.