Flying to the Moon and Back to Get an Endometriosis Diagnosis

“You could fly to the moon 456 times before getting an endometriosis diagnosis.”

This is a quote from a Forbes.com article discussing the struggle people go through in getting diagnosed with endometriosis. As I read this article, I reflected on my own journey to diagnosis, and what was obvious and not so obvious. It’s been 10 years since the obvious symptoms began and six years since my official diagnosis. So I am elated to write this piece. It is also ironic that as I write this piece I am going through one of the worst endometriosis flares I have ever experienced. And going through this takes me through my journey to getting diagnosed, and let me tell you it was not pretty. Even now, I get treated awfully when I have to go to the ER for help because there is not enough education and professional development for doctors to understand half of what we go through.

One in 10 women live with endometriosis yet it takes an average of seven-and-a-half years to get a diagnosis and several doctors to confirm. This is not OK. I saw thirteen doctors and had two surgeries before my diagnosis was confirmed. I also had multiple ER visits and years of pain and nobody could tell me why. I cried many days and almost gave up working because things were so bad. Why must we go through all of this and essentially lose our lives before we get answers?

The Forbes article explains that diagnosis is often difficult because endometriosis mimics other illnesses, and I get that, but from my firsthand experience I can tell you it is also because we are not taken seriously. I lost count of how many people told me it was all in my head or who thought I was drug-seeking, which was not the case at all. I even passed out at the ER once from the pain and all of sudden they decided to believe me — funny how that happens.

I believe the only way to combat long diagnosis times is education and awareness. You would be surprised how many medical professionals lack knowledge of 1) the female reproductive organs and 2) conditions such as endometriosis that can affect them. It’s awful and we need to step in and provide the necessary education to them so they are equipped to effectively treat people and not judge them.

I think this particular editorial captures the struggles of those trying to get diagnosed, as well as the consequences and repercussions of delayed diagnosis. It also pushed for education and advocacy, which is very much needed.

Endo affects not just the person who is struggling with it, but those who care about them. It affects the husband who sits up with the wife who is in pain or the best friend who is holding your hair while you vomit. And it affects all practitioners who try to assist in the treatment and diagnosis. We need more support, education and treatment options. Hopefully, this article will spark that and our voices will reach the masses to evoke the change we need.