Nothing is more powerful and authentic than an actual patient’s story. Patients with endometriosis experience the health system in a unique way that makes them doubt their pain and will cause delayed diagnosis and treatment. However, many decision-makers, doctors, and insurance companies still do not believe them. We want to dedicate this page to you, the endo-warrior who has gone through all of it. If you add your experience with endometriosis here, you help achieve two goals for the endometriosis community:
First, you are strengthening your and other patients’ stories here because it will not be only “you” or “she.” It will be several people with terrible experiences that led them to the same results: delayed diagnosis and treatment of endometriosis.
Second, you help this page get ranked first on Google search. This is important because whenever someone, including insurance companies and doctors, searches for the term “endometriosis,” this page shows at the top. Then, they see what is happening to patients, impacting their judgments and decisions. And that judgment and decision will affect many patients’ lives.
So please take a few minutes and share your unique journey of living with endometriosis and receiving care.
I started taking Lupron injections monthly after being diagnosed with Stromal Sex Cord Ovarian cancer. Stromal is a very rare form of cancer that has very little research. I had a total hysterectomy and started the injections. Stromal Cancer does not react to Chemo and the hormonal approach with Lupron was recommended by The Tumor Board to keep the cancer from spreading. I have been on it 2 years. I do have side effects and recently discussed stopping this treatment. My Oncologist wants me on this treatment “indefinitely “. I have CT scans every 6 months and CA 125 bloodwork every 3 months. So far so good, but I am worried about long term effects. I may seek a second an opinion from The James. My oncologist told me the decision is mine.