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Breaking News: Kale no match for Endometriosis Healthcare Structural Inequities

It shouldn’t need to be said, but here we are, again, reminding the world that people with Endometriosis did nothing to cause one of the most potentially destructive, excruciating, and incurable chronic inflammatory conditions on record to develop inside of their bodies.

You did not think endometriosis into existence and you did not white claw or happy meal your way into the worst club with the best people.

This is because endometriosis is not a lifestyle disease and no amount of cruciferous incantations can change that fact. There is also no cure for endometriosis, and so it’s very disturbing as well, to see profiteers taking advantage of vulnerable patient populations by claiming their potions and powders have special curative powers.

Endometriosis sufferers from the 19th & early 20th Centuries faced similar exhortations to get fit or go green, which invited similar unscrupulous, profit-seeking interests, who also peddled miracle cures and magical vegetable elixirs as promised remedies for, what was called back then, bouts of hysteria.

Of course, aspiring to a more healthy lifestyle is a laudable goal and absolutely has its place as a supporting role in self-care and healing. The severe flare-ups that certain foods can trigger are very real issues that endometriosis sufferers must navigate daily, which may include making individualized adjustments and investigating whether a Mediterranean diet or low FODMAP dietary guidelines may be of help.

Yet, sensitive consideration concerning these very personal choices is a must. We also urge well-meaning friends and wellness professionals alike to be mindful of the fact that people with endometriosis have been unlawfully denied access to timely, affordable, and appropriate medical care for decades, due to systemic structural inequities in healthcare systems throughout the world.

In such a context, this means that endometriosis patients are forced to become their own advocates and end up exhausting every imaginable lifestyle hack on the planet, in an attempt to escape from the soul-crushing, life-destroying reality of living with child birth labor – or testicular torsion, if that resonates more –  levels of incapacitating pain every single day.

Long dehumanized as objects of ridicule, people with endometriosis have also had their wheelchair use due to loss of mobility, or distressful masculinizing side effects from androgenic hormonal treatments, reduced to degrading popular drinking songs, like Lily the Pink, from the early 20th Century, which had bar patrons riotously singing lyrics like “Auntie Millie ran willy-nilly, when her legs they did recede, And so they rubbed on medicinal compound & now they call her Millipede. Jennifer Eccles had terrible freckles, and the boys all called her names, But she changed with medicinal compound, [and] now he joins in all their games.” 

In other words, the devastating reality is that, there is nothing new under the Sun when it comes to the story of endometriosis sufferers fighting for their very lives, while much of the world seems to do nothing but laugh or scold or simply turn their backs and blithely walk away.

How would you feel, then, if the only words of comfort you ever heard were, have you tried a celery enema or thinking nice thoughts about unicorns? It is from this historical context of dehumanization and degradation, that sometimes well-meaning suggestions, even with the best of intentions, can feel more like judgmental and invalidating admonishments.

And so, instead of more kale cleanses, what the world could really use right now would be a good swift dismantling of the unconstitional barriers to affordable, timely & quality care, that are actually the true culprits causing the most preventable harm to endometriosis patients.

Instead of 10,000 steps, you could help us reach 10,000 signatures of this petition, which demands that the Department of Justice investigate what we believe constitutes unlawful acts of healthcare discrimination and civil rights violations of American citizens with endometriosis.

Instead of more detox decoctions, why not detox Congress by contacting your Representative to ask why the Endometriosis CARE Act of 2022 has been stalled in Committee, with no perceptable progress in sight for more than 17,520 hours, and counting. That translates to 17,520 hours straight of suffering heart-attack levels of pain, while both Congress AND what feels like the entire medical establishment does essentially nothing but dismiss and devalue your very humanity?

To learn more about these and other serious barriers to timely, affordable, and quality care, you could follow the patient-led social media accounts of internationally-recognized leading voices in endometriosis advocacy, like Endo Girls Blog, Endo Black, In16yearsofendo, Endo en lo Profundo, Rey the Warrior, Jen.Dometriosis, Extra Pelvic Not Rare, Getting the Better of Endo, Sicker than Your Average, American End of Endo Project, Hope Still Stands, The Endo SpaceNat Blake Endo Warrior, and The Endometriosis Summit, just to name a few!

To follow the advocacy works of the other global EndoMarch organizations/groups, which are part of the informal global EndoMarch coalition*, check out these teams from 2024: Algeria Argentina, Austria, Bharain, Botzwana, Brazil, Bulgaria, Colombia, Costa Rica, Cyprus, Czech Republic, Democratic Republic of Congo, Dominican Republic, Ecuador, Egypt, France, Greece, Guadeloupe Island, Hungary, Ireland, India, Italy, Kenya, Malaysia, Mexico, Mongolia, Nigeria, Panama, Portugal, Peru, Philippines, Romania, Scotland, Singapore, Spain, Switzerland, Tunisia, UK- South Coast, UAE, Uganda, Uruguay, USA (multiple teams), Venezuela, Vietnam, Wales, and Zimbabwe. (This list is being updated as we speak; see the footnotes below for some important details).

Besides EndoMarch-specific events & teams, there are many other endometriosis education and advocacy groups and/or individuals who offer outstanding resources for people with endometriosis. For example, to learn more about endometriosis, you could take this outstanding free Endo Course, created by well-respected patient advocates, Kate Boyce, BCPA, and Rosemarie Philips.

If you are able, there’s also a great platform that allows you to help endometriosis patients raise money for medically-necessary excision surgery.

And, if you find yourself saying – Wait what?! Why isn’t health insurance covering medically-necessary surgery for endometriosis patients? – then see below for a few more burning questions pertaining to these sorts of structural, systemic inequities embedded within endometriosis healthcare globally, including,

Why are health insurance companies allowed to get away with falsely categorizing gold standard care for endometriosis as ‘elective surgery’ ? 

How is it that pharmaceutical companies are projecting $5 billion in profits off the ‘endometriosis sector’, yet endometriosis sufferers are only getting sicker and sicker?

How is it that people with endometriosis are unalived or in wheelchairs or dentures in their 20s because undue industry influence and unregulated profit-driven healthcare systems have allowed medications, like leuprolide acetate, to be fraudulently pushed onto two generations of unsuspecting patients, who’ve lost their lives or suffered permanent disability from the devastating destruction of their teeth and bones and joints and brains and spines?

How is it that we have enough money to send rovers to Mars, but somehow cannot find funding to recruit & train more endometriosis surgeons to address the shortage crisis?

How is it that, here in the U.S., the wealthiest nation in the world, people with endometriosis face some of the longest diagnostic delays in the world, currently averaging approximately 11.7* years? (*According to some studies; range globally is 4-11.7 years).

How is it that we have entire governmental agencies specifically for addressing health inequities (with multi-million dollar annual budgets), yet have seen essentially no meaningful progress in addressing the diagnostic and health outcome disparities that endometriosis patients from historically marginalized and/or minoritized groups face, including people from Black and Brown communities, nonbinary and transgender people, and other individuals identifying as part of LGTQBIA+ communities?

How is it that medical schools receive taxpayer-funded federal grants and tax breaks, yet continue to engage in federally-prohibited gender discrimination in higher education by teaching only the absolute bare minimum, based off of spectacularly outdated curricula riddled with harmful sexist & racist myths no less, about one of the leading causes of disability, multi-organ failure, premature death, cancer-associated co-morbidities & mortalities, infertility, and hospitalization in women, girls, and persons assigned female at birth?  (See the work of the American Association of Medical Colleges (AAMC) to address these long-standing gender & racial inequities in medical school curricula). 

How is it that the so-called ‘ standards of care’, promulgated by major women’s health medical societies, are so front and center in perpetuating many of these systemic failures? It’s practically Gotham City-level dystopic, with Endometriosis patient guidelines failing patients so miserably, that one advocate observed, “If the current standard of care had a slogan, it would be ‘ Endometriosis: leave the disease behind!’ “

Indeed, maybe it’s time to consider taking more forceful action, such as partnering with the ACLU to champion the cause of endometriosis health rights through class action legal remedies?

As you’re probably beginning to see now, Endometriosis care in America  – and around the world – is truly an absolute, unequivocal public health catastrophe, and millions of patients are left paying the price for our nation’s decades-long neglect.

Yet, here we are, at the end of another Endometriosis Awareness & Action Month, facing the stark reality that all of our collective efforts for change have come up short again. Even so, there’s really no other choice but to carry on with the sacred mission to force change by disrupting and dismantling the unjust systems that continue to marginalize and oppress people with endometriosis.

*IMPORTANT NOTE ABOUT ENDOMARCH PARTNERSHIPS AND/OR TEAMS:
1) The list of teams in this post are reflective of some of the organizations or individuals who were part of EndoMarch 2024.  However, there are many past participants who contributed significantly to building this global awareness movement, which you could learn more about here. Other teams will be added as soon as we finish gathering more information. If you don’t see your team listed, our apologies, please contact us at info@endomarch.org, to let us know and we will get that corrected as soon as possible).

2) There are a few previous EndoMarch partners/teams which are no longer part of the EndoMarch coalition, due to potential conflicts of interest. Our apologies for any distress this may have caused. We’ll have a list of official teams from 2024 available here as soon as possible and are working to address outstanding issues in this critical area of concern.