How to Advocate for Yourself if You Have Endometriosis

Endo, Endometriosis, Endometriosis Treatment, Endometriosis Diagnosis, Pelvic Pain, Period Pain
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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.

A few good ones are:
The Center for Endometriosis Care
Worldwide EndoMarch
The American End of Endo Project

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.

Seek Community

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!

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16 thoughts on “How to Advocate for Yourself if You Have Endometriosis

  1. As someone who also lives with a chronic condition, I totally agree. It’s so important to educate yourself on your disease so that you can advocate for yourself. If I wouldn’t have researched and networked with other people who had the same disease as me, I might still be suffering from symptoms, but since I knew more about my condition, I was able to work with my dr better to get a good treatment plan!

  2. I lived with Endo for many years and when I had my uterus out in 1990, it was everywhere. Even 16 years later, when I had my left ovary removed because of a burst cyst, more Endo was found, and my bladder and bowels were stuck together.

    It’s insidious and not to be taken lightly. You MUST see an expert to get proper care and treatment.

  3. It is so important to educate yourself and stand up if you aren’t comfortable with how something’s going regardless of your health concerns – Doctors ‘practice’ medicine… No one is all knowing. That doesn’t mean you won’t find out that they were actually correct over time, but questioning them and being firm on needing to know what’s happening, why, and have your voice and concerns heard (and given due diligence) is so important!

  4. Such an important post. You would think we would as the information era be aware of this serious condition. I have it & I’m shocked at how few know what I’m even talking about. We need to be our own advocates regardless of the letters behind someone name. I was once told I should stop the love affair I was having with my uterus & get hysterectomy by a male gynecologist taking call for my doctor! He also told me my husband was probably visiting a whore house after work! He didn’t know either of us. My huz has a 3 minute commute home from work so….Anyway I should have reported him. Not long after I switched Drs. You are the consumer & they work for you! Not the other way around.

  5. Thank you for sharing <3 I live with digestive health issues and think these tips are totally applicable to any chronic illness. It is SO hard to be a woman in the healthcare system today….John Oliver actually just did a really good piece about this on his show, about how women and POC are pushed aside in healthcare — I highly recommend you check it out.

  6. Thank you for this.
    I was finally diagnosed with Endometriosis three years ago after five very painful stomach attacks. Every time the doctors would put me through several tests, but they could never find out what was wrong with me, until I saw a specialist.

    Thanks for sharing.

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