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About Endometriosis

About Endometriosis

A Not-So-Rare Disease

What is Endometriosis?

Thanks to the efforts of Endometriosis Activists around the world, endometriosis is now being recognized as one of the most potentially excruciating & destructive medical conditions on record, which affects an estimated 1 in 5 women, girls, and persons assigned female at birth. (There are also an unmeasured number of men, intersex, transgender, and non-binary individuals affected). Conservatively speaking, that’s about as prevalent as diabetes (in the U.S.) and works out to roughly 15-20 million sufferers in the U.S., and approximately 400 million – 1. 5 billion worldwide (Nezhat et al latest research). 

Though you rarely hear about endometriosis in the news, it is a whole-body severe chronic inflammatory medical condition which is actually the third leading cause of hospitalization in women, girls, and persons assigned female at birth, and is among the leading causes of the estimated 600,000 hysterectomies performed each year in the U.S. (despite the fact that a hysterectomy can treat adenomyosis, but does not actually cure endometriosis).

Due to historic taboos and marginalization of chronic illnesses associated with menstruation, endometriosis is poorly understood, even by medical professionals and is, therefore, commonly misdiagnosed as acute appendicitis, irritable bowel syndrome, GERD, Celiac & other gastrointestinal diseases, Crohn’s & other inflammatory bowel diseases,  Sciatica, musculoskelatal disorders, and dozens of other conditions.

There is no cure for endometriosis and no known cause.

Those afflicted with endometriosis can face a lifetime of severe disability & life-limiting, and sometimes life-threatening, incapacitating symptoms throughout the entire body, including incapacitating pain (particularly pelvic pain), organ dysfunction and failure, several repeat surgeries, infertility, and increased risk for certain cancers.

Endometriosis is also closely related to many co-morbidities, including cardiovascular disease, which is already the leading cause of death in women in the U.S. However, those with endometriosis are 40% more likely to develop ischemic heart disease and 19% more likely to develop cerebrovascular disease.

Other conditions that are more common in patients with endometriosis include: Adenomyosis, Hypothyroidism; Fibromyalgia; Chronic Fatigue Syndrome; Autoimmune diseases; Allergies and asthma;  Systemic Lupus Erythematosus (SLE or lupus); Rheumatoid Arthritis; Celiac Disease; Multiple Sclerosis (MS); and Inflammatory Bowel Disease (IBS).

In addition, patients with endometriosis may face immune & endocrinological dysfunction, kidney failure, and damage to multiple organs and tissues, including the bowel, bladder, ureters, diaphragm, muscles, musculoskeletal structures, nerves, ligaments, lungs, and liver.

Due to the potential for such widespread, severe chronic symptoms, endometriosis is also one of the leading causes of school absences in teen & pre-teen girls.

Despite such alarming statistics, endometriosis receives only pennies on the dollar in federally-funded spending for research and public health awareness campaigns.

Discrimination and Barriers to Care Causing Significant Harm

Decades of under-funding, serious barriers to adequate care (all rooted in discrimination), and a broken healthcare system, have contributed to significantly worse health outcomes for people with Endometriosis, including multiple failed surgeries, wrong-organ surgeries, life-threatening kidney failure, life-threatening chronic lung collapse, increased risk of life-threatening cardiovascular disease, increased risk of certain deadly cancers, increased risk of early onset neurodegenerative disease, crippling degenerative bone disease, and loss of many other organs & fertility. A nationwide shortage of qualified Endometriosis specialists, along with questionable repeat insurance denials for medically necessary care, contribute to this ever-growing crisis, which is why Drs. Nezhat founded the American & Global Congress of Endometriosis Subspecialists (AGCES). 

The potential for significant harm is compounded further when you factor in diagnostic delays averaging 6-10 years or longer. Some have even gone 20-40 years without a proper diagnosis.

Endometriosis patients demand and deserve better and will no longer stand for being subjected to such grossly inadequate or inappropriate medical care.

We EndoMarch Because

A disease that’s been described as more painful than childbirth labor, that’s one of the leading causes of organ failure & hospitalization in women, girls, and persons assigned female at birth, and is as prevalent as diabetes, shouldn’t be a mystery to the medical community and shouldn’t take up to 10 years or longer to diagnose.

We EndoMarch because as many as 400 million – 1.5 billion people with endometriosis demand and deserve better.

The decades-long failure of modern medicine to adequately diagnose and treat such a prevalent & potentially organ-destroying chronic disease has caused irreparable harm to millions around the world, including preventable disease progression, lost fertility, permanent damage to multiple organs, and a lifetime of lost opportunities to pursue career, educational, and family goals.

Why We EndoMarch

This is why each year on “EndoMarch Day” you’ll see thousands of endometriosis advocates organizing awareness events across the U.S. and in 70+ countries around the world, to get the word out that endometriosis is a whole-body, chronic inflammatory disease that can potentially cause body-wide incapacitating pain, compromised fertility, and serious, multi-organ damage in people. 

Join the global EndoMarch movement so that, together, we can be the generation that finally puts an end to centuries of silence, suffering, and shame.

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