I am forever grateful to my incredible OBGYN, Dr. Anne Davis, at the Columbia Doctors Division of Family Planning. Since January 2015, Dr. Davis has suffered through much of this process with me. She was the one who finally discovered a suspected unruptured endometrioma on a sonogram, had the presence of mind to refer me to someone who could further investigate, and most importantly, was willing to outfit me with both the Mirena IUD and Nexplanon implants in order to find the birth control combination that worked for my body and condition. My body is extremely sensitive to hormones and does not tolerate The Pill, and for a while I worried we might never find a birth control regimen that would suppress ovulation while also taking away my period. I cannot overstate the peace of mind these implants have given me, knowing that I finally have the right combination of medication in my body doing everything possible to combat this aggressive disease. I thank Dr. Davis and her Nurse Practitioner, Ashley Tedone, for sticking with me through this journey—patiently, kindly, and compassionately working through countless trials and errors to find a solution.
I also owe an enormous debt of gratitude to my surgeon Dr. Kathy Huang, director of the NYU Langone Endometriosis Center. Through robotic excision surgery, Dr. Huang successfully excised over a decade's worth of endometrial lesions and took me to stage 0, all while perfectly preserving what were once my damaged and densely adhered pelvic organs. She was incredibly validating throughout the entire process—a much-needed antidote to the years of medical invalidation I'd experienced with so many other doctors. Thanks to Dr. Huang, I have an excellent prognosis, should not need surgery again, and have newfound hope for my general quality of life.
My name is Sarah Digby, and I suffered for over 15 years before receiving a diagnosis of endometriosis (and later, adenomyosis). I am originally from San Antonio, Texas, but since 2008, I have called New York home.
Like most with the disease, I knew early on that something was not right. Starting from the age of 12, I had debilitating pain that would ravage my pelvic region, radiating down my legs to the bottoms of my feet. My periods were so heavy that I never managed to get them under control—not even in my 20's. By age 13, I was regularly missing school from the severity of my symptoms.
For more than a decade, Texas doctors dismissed my pain as "normal", claiming it was "in my head" and that I was "simply a dramatic teenager" (which to be fair, I was, but I was also in a lot of pain).
After enough time, I believed them. And after enough time, I stopped complaining.
By the time my OBGYN in New York discovered the disease, my condition was so advanced that it took multiple surgeries, me passing out numerous times in public from the indescribable pain of a ruptured endometrioma (including once on a layover, when paramedics had to pull me off a plane right before takeoff), and a comprehensive birth control regimen to finally find relief.
Unfortunately, my story of misdiagnosis and lack of knowledge about my own body is not uncommon. While my story ultimately has a happy ending, many other women experience harrowing, debilitating, and life-altering pain on a daily basis, undergoing over a dozen surgeries and never finding relief. Endometriosis affects at least 1 in 10 women, and for centuries, society and doctors have ignored and dismissed this serious condition. It's time to break the taboo, speak out, and educate others about this women's health crisis.
The concept for Endographics was born during Endometriosis Awareness Month, when I created my first infographic, "What is Endometriosis?" The infographic quickly went viral in countries across the world, with hundreds of thousands of views on 5 different continents within a matter of days.
Clearly there was a need for this type of shareable information—a need with which I am all too familiar: A combination of factors—such as Texas public schools' sex education policy (or lack thereof) and society's perception of women's health as "taboo"—deprived me of critical information about my body growing up, robbing me of the ability to advocate for myself and realize that what I was experiencing was not, in fact, "normal".
How is it that I, someone with an Ivy League master's degree, reached my mid-20's without the slightest idea of what ovulation or my cervix were? It was almost as if the goal of society and of those entrusted with teaching me about my body was to ensure I never knew enough about it to actually exercise agency over it and advocate for solutions.
My first surgery and my (presumably) last surgery were exactly 1.5 years apart, proving that once armed with information and knowledge, 1.5 years was all I needed to take action and find relief—including freezing my eggs while my insurance would still cover it. And 1.5 years would have been all I needed had I been a teenager or had I been in my early 20's; unfortunately, without this knowledge, I was powerless to do anything until I was 27.
I do not want one more generation of women to suffer unnecessarily. I started Endographics as a way to share the information I wish I had seen growing up, and to share the information other women wish they had known as well. The only way we are going to combat this stigma and ensure that the next generation does not endure this same fate is by educating society as a whole.
We need more research; we need practical and non-surgical diagnostic methods; and we need a society that cares about the more than 176 million women suffering every day with unimaginable pain.
Take a moment to read through the infographics on this site. And if you feel up to it, please share them. You never know who is out there desperately looking for information.