Whether you have been diagnosed or suspect that you may have Endometriosis, it’s important to advocate for yourself. The world of Endometriosis is difficult to navigate, so it’s important to educate yourself as much as possible and learn to be your own advocate. I’m excited to share with you a few tips that I’ve learned along the way.
Do your research
This is especially important because believe it or not, doctors are not taught about Endometriosis in medical school. With my experience with medical professionals over the years, I never could figure out why no one seemed to know how to help me. When I finally found a doctor who would listen to me, he actually confirmed the rumors that I heard about the lack of education of this disease in medical school. He had to learn about it on his own. It took 11 years to get a diagnosis, and I believe this was a huge factor, as I had been to about a dozen doctors over the years who knew nothing about it. It’s utterly ridiculous for women to wait that long in pain while the disease continues to spread, so that’s why it’s so important to learn as much as you can about Endometriosis yourself. A regular OB/GYN is most likely not going to know enough about it to be able to help you effectively. There’s tons of information out there, so make sure you’re learning from a reputable source.
Although I am not a medical professional, I’ve been dealing with Endometriosis for 13 years, so feel free to reach out to me if you have any questions. I’m always happy to help others navigate this unpredictable disease in any way I can.
Find a doctor who is an Endometriosis EXPERT
When it comes to finding the right treatment for Endometriosis, it’s vital to seek out an expert Endometriosis health care provider. No, I’m not talking about an OB/GYN. They’re not generally knowledgeable about the disease. In fact, I have been to about a dozen over the years and none of them were able to help me manage my Endometriosis. The downside of seeking an Endometriosis expert is that there’s very few in the United States or the rest of the world. I had to drive 6 hours one way to receive proper treatment from an expert, but it was certainly worth it. For a list of experts in the United States, you can look up Nancy’s Nook on Facebook where you can find a comprehensive document showing experts by state.
A majority of what I’ve learned about Endometriosis has been from the awesome community of Endo sisters. I started connecting with many of them on Instagram a couple of years ago, and the community is so supportive and helpful. Just check out some Endo-related hashtags and it’s easy to find others to connect with. The Endo community truly is the worst club filled with the best people! I would also love to connect with you. Feel free to contact me here or find me on IG @prettygutsy. Can’t wait to hear from you!