ENDOMETRIOSIS

The time has come, the conversation is changing. We are no longer hiding our illness beneath our smiling exteriors as a shameful secret. Shame is a construct we were forced to adhere to: until now. Join us as we step into the light, bringing awareness to our disease AND demanding better treatment from the medical community. 176 million of us demand to be seen. WE WILL BE INVISIBLE NO LONGER.

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Funds for Excision

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Our aim is to help defray the costs associated with excision surgery. Skilled excision is considered the gold standard in successful treatment of endometriosis, however locating and traveling to these experts can be near impossible for many due to the financial constraints involved. Not all doctors accept insurance and many are out of network. In addition, the amount of surgeons performing skilled excision throughout the world is few. Compound the travel/time off work/child care costs with the expense of surgery and one will find the majority of patients are not able to access what data show to be the best chance at living an endometriosis-free life.

With the goal of helping our first patient in 2017, Endo (In)Visible wants to create equal access to this gold standard of treatment. If you have experienced the positive outcome of excision yourself, please consider a gift to help others break free from the monthly, and often chronic, experience of debilitating pain. If you or a loved one has faced infertility due to endometriosis, consider a donation to help others get the treatment they need in order to move forward with starting a family. For many, just the ability to cover travel and accommodation costs can allow a woman who needs surgery to be able to have it.

The following amounts are suggestions; we welcome any and all gifts, no matter the amount. We would love to thank you on our site; please indicate if this is something that would be welcomed. 


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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.

Please join us as we discover all our community has to offer: where we can find support in each other, locate competent and knowledgeable physicians, discover the best treatments such as excision surgery, come together to raise funds for excision, explore diet and alternative therapies, and find resources for our family and friends to understand us. We CAN remove the cloak of invisibility that surrounds this disease. Let us reveal ourselves to be very, very visible.

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 (we 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 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 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. 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 

Unite Endo

Facebook Groups:

Nancy’s Nook

Endo Warriors

EndoMetropolis