Advocating for an Endo Diagnosis

Since pain is subjective, endometriosis can be dismissed early in patients’ lives by their friends, parents, teachers, and even healthcare providers. People experiencing pelvic pain and painful periods have been told time and time again that their pain is normal.

But what do you do when you know your pain isn’t normal? Because if it were normal, why isn't everyone clenching their teeth or grabbing their abdomen in pain throughout their period? Why are other people able to workout during their period when I can barely get out of bed? Why am I, in the most extreme instances, vomiting and missing work from the pain?

Surely if everyone were suffering the same, then there’d be a solution with a television advertisement every 6-8 minutes, as frequently as a tampon commercial. 

When you know something is wrong

Kelsey Nordstrom, founder of the popular Instagram account @endostrong, recently shared her story: that the online endo community was the most helpful resource in seeking an endo diagnosis. Kelsey reports that she saw more than 10 doctors in 2 years when her symptoms were at their worst before joining the online community that supported her intuition and encouraged her to seek out an endo specialist. 

This story is, unfortunately, not uncommon. It takes people with endo symptoms more than five separate physician visits and four to ten years to receive a correct diagnosis, on average. Many people in online support groups report suspecting endo and not being able to find a doctor to take them seriously. And honestly, it is hard to make the argument that you have a disease that can only be confirmed through surgery under general anesthesia. A surgery that is so highly specialized that only a handful of surgeons know how to perform it well, not to mention the hoops that have to be jumped through to get insurance providers to pay for it. 

Advocating for yourself and others

If you’re struggling to get diagnosed, here are some ways to advocate for yourself:

If you have struggled getting a diagnosis in the past, here are some ways to help advocate for others:

This Endometriosis Awareness Month, speak up. Stories are empowering. Answers are powerful. Advocate for yourself and others by talking about endo. 

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Photo Credit: Unsplash

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