Let's change Endometriosis narrative
I don’t usually talk about my life as an endometriosis patient. When I used to talk about my symptoms, such as chronic fatigue and excruciating pain, common replies were that others get tired too, or that if I had stopped thinking about the pain, the pain would have stopped. How hadn’t I thought about this before?
I was first diagnosed with endometriosis in 2004, after at least a decade of increasingly painful periods and doctors telling me it was normal: “If you feel pain, a regular painkiller will make you feel better”. I stopped taking regular painkillers when I realized they weren’t enough to ease my pain: it was only with my first laparoscopic surgery, in 2007, that I realized the wonders of morphine.
Before my surgery, my everyday life was a normalized hell: I ended up adjusting myself to the pain I felt. As it increased, I could neither stand to walk nor even sit. My only option was to lay down with something warm on my belly, and sometimes I fell asleep overwhelmed by the exhaustion caused by my pain. As you would have probably heard from other endometriosis sufferers, I too felt like dying. Sometimes, I even wished I could have died to just stop feeling that pain.
A few years after my surgery, I started my life-long treatment with a dienogest-based pill: I was in my early 30s when my artificial menopause started and now, in my early 40s, my bones’ density is similar to that of my 94 years old grandmother. My DXA, last year, actually left little room to sarcastic comments, stating my bones are at high fracture risk (yet, when my mom told me about the DXA report, I was moving to the UK with a 14kg luggage in one hand, a 10kg luggage in the other, and a 5kg backpack, but my stubborn heroine-like attitude is another story).
But still, pain, chronic body fatigue, digestive issues, flare-ups and other symptoms are affecting my everyday life and social relationships.
But what if I wasn’t a woman?
If I wasn’t a woman, besides all of the frustrations for not being believed by the doctors who check you up, whether male or female, there would be further delays in diagnosis and the pain caused by discrimination and underrepresentation.
March is Endometriosis Awareness Month, and I would like to make the largest number of people possible aware that it is not just a women’s matter.
Endo is generally understood and presented as “a disease affecting women of reproductive age or younger, in which the endometrium or the lining of the uterus grows outside the womb”, “a condition which affects around 1–2% of women worldwide“, “a common gynecological condition, affecting up to 10 percent of women”. The majority of the statistics, together with the main narrative about this health condition, are about women. As a result, also many patient associations and initiatives to raise awareness on endometriosis speak to women and their male partners, telling them that endo-sisters are not alone in this fight. But what about our endo-buddies, out there, and their partners, continually being neglected by endometriosis’ statistics and narrative?
Some studies report that there are “documented cases of cis men who present with endometriosis of the prostate that is typically discovered when their body is introduced to estrogenic effects” [Luke Fox on Hormones Matter]. In addition, outside the dominant binary perspective, endometriosis affects also trans men, whose cases are less researched than women and are usually erased by the statistics and the main narrative of this disease. As if being equipped with a uterus was the defining feature of being women, anyway.
Endometriosis Network reports that a study from 2005 found out that 1 in 4 people had been denied healthcare in the past because they were transgender*. We usually say that endometriosis affects 1 in 10 women, but what if studying more men and non-binary people this statistic needs to be adjusted?
A more inclusive language is needed to change the endometriosis narrative and to have a positive impact on the lives of the men and non-binary people who cope with endometriosis. Some examples? 1 in 10 women, should this statistic be confirmed by further studies, should become 1 in 10 people. We should stop talking about endo-sister, and maybe start talking about endo-buddies, endo-siblings, friEndo, as suggested by Endometriosis Network. I would also stop using the warrior/hero(in) rhetoric, since it may be toxic for our own mental health and health in general: there are times in which we feel everything but warriors and heroes/heroines, and we just want to lay down all day and give up the fight because we feel like all our energies were drained. That is perfectly fine, and we should definitely stop pretending to be strong all the time: that is an illusion, and we probably wouldn’t be like that even without Endo. It is not a shame if we cannot drink alcohol or eat dairy products, if we have to cancel our appointments on the last minute or if we do not manage to get out of bed in the morning, as well as if we get so tired after a long walk that we need to sleep for hours. This is why, in my opinion, calling ourselves ‘warriors’ is just as toxic as calling ourselves ‘endo-sisters’.
If you want to learn more about the experiences of two trans men with endometriosis, I’d recommend Corey Smith’s story here (https://www.endofound.org/he-is-1-in-10-a-trans-man-shares-what-life-is-like-with-endometriosis) and Luke Fox’ story here (http://www.hormonesmatter.com/endometriosis-transgender-beyond-gendered-reproductive-health).
However, there are many resources that allow us to see Endometriosis from a different perspective. Here is my short selection:
After a MA in Museum Studies, I am building my way into the museum sector as a professional. I am a tour guide in Sardinia, a part-time translator, a volunteer social media editor and a huge lover of Japanese culture. I do not describe myself as an activist, but I want to use my voice and my privilege to raise awareness on underrepresented voices in the dominant narrative, be it endometriosis, heritage or another context.