Would you be surprised if we told you there’s a disease affecting 1 in 10 women and individuals around the world that most have never heard of? Would you be stunned to realize it affects women at a rate higher than asthma or diabetes? Would you believe that in one study, one half of general practitioners could not cite the three main symptoms of the disease? What if we told you that conservative surgery to remove this disease was discovered to be effective decades ago but is still not reimbursed fairly by insurance companies, leading to skilled surgical practices requiring self-pay or being out of network providers?

This is the public health crisis that is endometriosis.

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We are not invisible–but our suffering is. The implants and scar tissue that cover our organs are. The pain is. And those things that are visual, we try to hide. We grimace and try to hide our cramps at work, among friends, from our loved ones, in order not to complain, or seem weak, or give in to the disease. When we bleed through our clothes we grab for the jacket or run to the toilet to pass a clot, hoping no one can see what our bodies have made manifest. When we have sex we try to put a brave face on the pain we experience, because we want so much to love and be loved, just like everyone else, to experience the pleasure that comes with physical connection. We close our mouths instead of screaming out in agony when we feel our body responding to its own tissue out of place, outside of our uterus, on our bowels, on our bladders, kidneys, lungs and even spinal cords. We don’t share our complete story when asked about why we don’t have children yet, or why our children are IVF, or why we have adopted. We call in sick citing other reasons-a sinus infection, strep throat, a stomach bug. Our partners and families give myriad reasons why they must leave work, when they are coming home to help us out of bed, to pick the kids up from school, to make dinner for the family, or to meet us at the emergency room.

Let’s refuse to accept this disease as part of our narrative without being able to tell our story–OUR LIVES–aloud. Because endometriosis is more than just a “story”, it’s our life, every day. It would seem every aspect of our lives is affected by this disease–from the more serious effects of infertility, chronic pain, serious bowel complications and depression, to keeping one’s employers satisfied when the sick days seem to pile up, to trying to maintain friendships when cancellations become the norm. We keep our heads down and chins up, and we get on with the getting on of life, through infertility, depression, chronic pain, and numerous surgeries. We go to the doctor and are ignored over and over again. When we are listened to, we are met with the attitude that endometriosis is just something we have to deal with, and we shouldn’t make a big deal about it. Influenced by the literature that does exist, and the fact that endometriosis is so misunderstood, we have let the existing language shape how we look at endo and ourselves: at best an issue, at worst a byproduct of being female. But let’s be clear, here and now–endometriosis is a disease. And the sooner we put serious language to this disease, the better our chances are of the health community and the general population taking this disease seriously.


In an effort not to rehash the really good and nuanced information that is out there, we provide resources for you to devour. However, there is A LOT of erroneous information on the interwebs about endometriosis/adenomyosis, its origin, its treatment and cure (the closest thing to a cure is excision). With excision some get decades of relief, and others get finite relief with endo reappearing or recurring (we hesitate to use the words grow back or redevelop. Some will say that if endo is properly excised it doesn’t come back, but skilled excision surgeons have confirmed endo reappearing in an area that was completely excised previously. The CEC also makes mention of this on their website.)

Please avail yourself of the knowledge the following sites provide; endo veterans and advocates have been using these with confidence for years. If you find something on a site that confuses you, cross-check with one of the below sites, reach out here, or join a vetted group on Facebook (Nancy’s Nook, Endo Warriors or Endometropolis). These are  groups dedicated to evidence-based treatments as well as healthy dialogue and debate. If we don’t know about our disease, we cannot advocate for ourselves when being treated by our physicians.

You will find that there are a few theories out there about endometriosis.  It is possible that talented surgeons that respect each other and work with each other will maintain conflicting theories about endometriosis. Some theories have been put forth by outliers, and before we discount theories that are “fringe” remember this: revolutions in medicine have come about thanks to outcasts. Ignaz Semmelweis discovered that antiseptic measures taken by doctors could cut infant mortality in hospitals; his ideas were rejected by the medical community until Louis Pasteur came along and confirmed germ theory. Martin Couney, who co-developed incubators for premature babies, opened a “freak” exhibit on Coney Island to raise money and care for premature babies when hospitals laughed at the idea of an incubator. In the twenty-first century, can you imagine a hospital without incubators in its NICU?

Read in small bites, and try not to get overwhelmed. We’re gonna get to a place where we understand, but we are going to have to do it together.


Endometriosis Research Center


Center for Endometriosis Care

Endometriosis Association of Ireland

Endometriosis Australia

World Endometriosis Society


Extra Pelvic Not Rare


Facebook Groups:

Nancy’s Nook

Endo Warriors


ExtraPelvic Not Rare