Endo Facts


In an effort not to rehash the really good and nuanced information that is out there, I will provide resources for you to scour. However, there is A LOT of erroneous information on the interwebs about endo, 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 (I hesitate to use the word 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. The CEC also makes mention of this on their website.)

So-before I take you further down the rabbit hole with all this talk of excision, please avail yourself of the following sites that veterans have been using with confidence. If you find something on a site that confuses you, please reach out here, or join EndoMetropolis on FB, another great group for 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 you 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.

I am not a medical professional-I’ve just had to educate myself in order to maintain a modicum of control (really the illusion of control) over this disease. 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

Endopaedia

Center for Endometriosis Care

Endometriosis Research Center

Unite Endo

World Endometriosis Society

Endometriosis.org 

Endo Action Alliance