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.
Resources:
Endometriosis Research Center
Endopaedia
Center for Endometriosis Care
Endometriosis Association of Ireland
Endometriosis Australia
World Endometriosis Society
Endometriosis.org
Facebook Groups:
Nancy’s Nook
Endo Warriors
EndoMetropolis
ExtraPelvic Not Rare