6 Things You Need To Know This Endometriosis Awareness Month
Advocacy is only effective when it's accurate
I often waver on whether or not I will “do something” AKA engage in emotional labour advocacy for endometriosis awareness month. It can be exhausting and sometimes feel fruitless to advocate when so little changes for people with endo.
A friend recently thrifted a book from the 1980s about endometriosis, and after perusing the pages noted that not much has changed for people with endo in over thirty years.
How fucked is that?!
People with endometriosis deserve better. Not just women, all of them.
Here are a few reminders as we head into this month of awareness.
Endometriosis IS NOT the Endometrium
Endometriosis occurs when tissue similar to the lining of the uterus is found throughout the body. Endo is often described as displaced uterine lining (endometrium), but endo tissue is pathologically different from the endometrium.
The pelvis may be the most common place to find endo, but it’s been found on every organ and anatomical structure in the body, including the diaphragm, brain, pericardium, spleen, nasal cavity, and more. It is truly a whole-body disease, but when it’s treated like a gynaecological one, patients lose.
A uterus is often used as a symbol for endometriosis which is not only inaccurate, but perpetuates misinformation. Medical research adds to this with outdated studies and definitions that don’t encompass the full spectrum of this disease that is so much more than a “bad period.”
A hysterectomy is not a cure
Since, by definition, endo exists outside the uterus, removing the uterus will not remove endo.
Yes, I have had a hysterectomy and learned some valuable lessons in the process, but I didn’t do it to “cure” my endo.
There is no cure.
The touted “gold standard” of endometriosis treatment also happens to be the only definitive way of diagnosing the disease: laparoscopic excision surgery done by an expert excision surgeon. Some specialists are paving the way for endometriosis to be diagnosed via advanced imaging techniques, but there is a lot of controversy surrounding the topic in the endometriosis community. I say the more skills and diagnostic tools being developed to help people with endo, the better.
As someone who has now had three surgeries for endo (ablation, excision, excision with hysterectomy), I know the necessity of endometriosis experts. I have learned a lot from them, and they have also learned a lot from me, as they do (or should) from all patients.
People of all genders have endo
It’s not that hard to accept that people of all genders have endometriosis.
Yes, it affects 1 in 10 women and girls. It also affects unmeasured numbers of trans men, nonbinary, intersex, and gender-diverse folks. It’s also been found in cisgender men, nullifying the fucking annoying and harmful narrative that “If men had endo we’d have a cure by now.” It’s not funny and it never was.
We need to stop treating endometriosis as a woman’s disease, or a gynaecological or reproductive disease, because it’s not. Yes, it impacts fertility. So do other illnesses like cancer and hypothyroidism. In fact some experts are calling for endo to be treated the same way we treat cancer, because it has similar mechanisms of growth and impact on people’s lives.
Experiences with endometriosis are vast, and we need narratives beyond the cisheteronormative one that pervades the medical treatment and general advocacy of endometriosis.
The unfortunate reality is that it’s often not safe in endo spaces for alternative voices to be heard. Accusations of erasing women by expanding the representation of endo are baseless and harmful to the greater endo community. No one loses when we include everyone with endo. Each nuanced experience has something to teach us about the way endo impacts some people differently than others.
Patients are the ultimate experts
Those who live with endo every day are the ones who best understand the symptoms and the havoc it wreaks on lives.
Of course, we need endometriosis excision experts and effective healthcare systems that don’t discriminate against women, girls, trans, nonbinary, and gender-diverse folks.
But the dismissal of folks experiencing symptoms of endo is endemic in medicine. The dismissal of anything associated with women’s health is egregiously common.
People with endo should be going to university lectures and talking about their experience. Medical students should be required to do a deep dive into endometriosis social media and support groups to really understand what day-to-day life is like for endo peeps. How can you treat an individual if you treat everyone the same?
Language matters
Three years ago I wrote that “It’s Time for the Endometriosis Community to Drop Gendered Language.” While the post was celebrated by many in the community, it also garnered some backlash and inspired a couple of reaction articles and many TERFy (Trans-Exclusionary Radical Feminist) comments on some conservative sites, I stand by it now more than ever.
It’s not only gendered language in the form of pronouns and respecting gender identity, but also in the way we talk about the disease itself.
It matters when we discuss “treatment” versus “management.”
It matters when discussing the difference between an (expert) excision surgeon and an endometriosis specialist - there is no formal training for the latter.
It matters when a transmasculine person with endo has to go to a gynaecology clinic to have endo concerns addressed and is continually misgendered and surrounded by dysphoria-inducing imagery.
It matters when doctors tell patients that getting pregnant will improve your symptoms.
It matters when the medical system constantly tells us (directly or indirectly) that we don’t deserve to feel better, to live a life without pain.
People with endo deserve pleasure
Chronic illness can take away your will to live. It can turn you into someone you don’t recognize because you have no other choice.
People with disabilities and chronic health issues are often just surviving, and the concept of pleasure can be foreign as hell.
There are so many little things that can bring us pleasure and I think the mindset of someone with endo can often be that they don’t deserve good things.
In their book Pleasure Activism, adrienne marie brown defines the book’s titular term as “a politics of healing and happiness that explodes the dour myth that changing the world is just another form of work.”
Yes, it takes work to manage endometriosis and chronic illness and everything that comes with it. But people with endo deserve pleasure.
We deserve a reprieve from managing appointments and medications and mental health and pain, even if it’s just for a moment. We deserve to feel feelings of happy satisfaction and enjoyment in our lives amidst the pain.
If you have endo and you’re interested in devoting some time to pleasure, to explore what pleasure looks like for you and to share supportive space with other endo peeps, check out my upcoming virtual writing workshop with The Endometriosis Network Canada on Sunday, March 19 from 3-5pm EST.
Mark your calendars - registration opens Monday, March 6, 2023 at endometriosisnetwork.com/events.
I hope to see you there!