Hello, lovelies. My name is Arti Shah, and welcome to another episode of A Ray of Sunshine, a journey of an endo warrior and everything in between.
In this episode, we discuss the importance of correcting misinformation around and about endometriosis.
Those living with endometriosis turn to online resources for information and support because unfortunately endometriosis is a very under researched inflammatory condition and is not taught as a condition in itself as a whole. Therefore, it’s so important to make sure you are getting all your information and support from the right sources.
We speak with Katie Boyce, who is not only an endometriosis patient, but also a board-certified patient advocate and chemist, and co-founder of Endo Girls Blog (https://endogirlblog.com/).
Disclaimer: The information on this podcast is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment.
The transcript of the first few minutes of this podcast is presented below:
Hello, lovelies. My name is Arti Shah, and welcome to another episode of A Ray of Sunshine, a journey of an ender warrior and everything in between. Welcome home.
In today's episode, we discuss the importance of correcting misinformation around and about endometriosis. We also discuss what to do if you're dismissed by doctors and questions to ask the doctors and the importance of advocacy for endometriosis. Those living with endometriosis turn to online resources for information and support because unfortunately, endometriosis is a very under researched inflammatory condition and is not taught as a condition in itself as a whole. Therefore, it's so important to make sure you are getting all your information and support from the right sources available. We have too many pharma driven advocates who push for usage of certain drugs and too much misinformation being circulated by a lot of OB-GYNs, non gynecological doctors and selected media houses. This not only leads to patients getting the wrong treatments, development of other conditions due to the side effects of certain medications, but also leads to have a cause by the society for the patient. In today's episode, I will be talking to Katie, who is a board certified patient advocate for endometriosis from America and we will be talking about the importance of correcting misinformation around and about endometriosis, what to do if you're dismissed by doctors, and the importance of advocacy for endometriosis.
Hi Katie, and welcome to A Ray of Sunshine.
Hi, thank you so much for having me. My name is Katie, I'm from Arizona in the United States.
I. I am an endometriosis patient. I have battled this disease for well over 15 years. My story is very much like others with endometriosis. Going years without a diagnosis, misdiagnosis, being dismissed, before finally finding a surgeon who took me seriously and was able to help me get my life back. Because of that experience, once I started feeling better and recovering from my last surgery, I really got inspired to help other endometriosis patients be able to find the same kind of care that I was able to receive. I went out on this little journey of trying to figure out the best way to do so, and I found that at least here in the United States, we have a board certification for being a patient advocate. So I proceeded with that process. It was pretty lengthy. I definitely had to do a lot of studying. It was much more intense than I had originally realized. Um, it was more than just making cute posts on the internet about endometriosis, you know, So it was a much more broad, advocacy endeavor than just endometriosis itself.
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