FKA Ellen Anderson | Dynamically Disabled 🏠 ex-Growth Product (SEO & API Data) @ RDFN ex-Data Sourcing Operations @ PitchBook 📈📉
A decade is actually pretty good, from MY perspective… it took me 15+ years to get my #endometriosis 🩸🩸🩸 diagnosis! 😤😓⏳ In my case, the main systemic factors that I feel kept me from getting my #ENDO diagnosis were: 👉 ATYPICALLY HIGH BAR FOR DIAGNOSIS 🩻 Did YOU know that endo can only be concretely diagnosed via surgery? Soft tissues (like the patchwork of endometriosis tissue that ends up growing on internal organs, then bleeding into a patient’s body cavity, creating inflammation & causing scar tissue to form, often ‘gluing’ her internal organs together) can’t be seen on most diagnostic imaging available today - you have to undergo SURGERY to prove your pain, which can be quite a high bar to bargain for with the US medical system, and especially without any pre-existing ‘proof’ of condition other than your own subjective experience of pain 😖💸💸 👉 LACK OF PROVIDER EDUCATION 🥼 I was directly told by my physicians for many years that my pain & symptoms simply COULD NOT EXIST; this had devastating impacts, both direct & trickle-down, on my physical AND mental health, at the time. 🤕 My pain did not cease to exists because of their collective disbelief, unfortunately; those healthcare providers simply could not conceive of my symptoms as real, because to them, they were not. Doctors were not yet educated on endometriosis & its symptoms, and therefore could not conceive of my pain - or perceive me correctly as the patient I was. 😵💫 👉 LACK OF PATIENT EDUCATION 🧠 Since before I ever attended my first homecoming dance (which happens at age 14 for most teens in the USA), I have been told by trusted physician figures in my life that my severe & life-altering symptoms simply could not exist. 🤯 Because of that, it has been a long & winding road of personal education to come to a place where I personally can perceive of my own pain as symptomatic, and therefore know when and how to advocate for myself & my healthcare needs. 🛣️✨ We as patients often take it for granted when the data falls in our favor; a blood test result that supports an internal experience, or a well-evidenced and understood body of research on a disease that enables a physician and patient to work collboratively to identify a probable root cause of disease & move continuously forward together towards health. But what happens when your symptoms fall through the cracks of the systems designed to catch them? 💔 In my experience… that means it’s an entirely different user journey, to achieve the same results. Different data, different tests, and critically different PATIENT COST… but ultimately, painting the same picture. 🌱🎨🖌️🖼️✨
Associate Professor of Radiology at Mayo Clinic Founder and Course Director of the International Endometriosis Imaging Congress
Have you ever wondered why #endometriosis has nearly a decade long delay in diagnosis?! It is a persistent challenge, even in the era of modern medicine and I’m grateful to share my perspective on it in this interview. #EndometriosisAwarenessMonth @Mayo Cinic
