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When My Pain Wasn't 'Just Endometriosis'

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As I sit here in my bed with my heating pad and my heart racing, I start to reflect on the past two and a half days I spent in the hospital.

My name is Ingrid and I have endometriosis as well as fibromyalgia and interstitial cystitis (IC). I’m a robotics engineer, and still try to live my fast-paced lifestyle despite my disabilities. But this week, ­my body reminded me that I do, in fact, have a debilitating disease that can have serious consequences.

Those of you with IC know that it basically feels like having a constant urinary tract infection – so when my bladder started acting up, I thought, “Hmm, maybe it was that glass of wine I had.” But the bladder pain continued, and I went on with my life. Pretty soon I was unable to participate in normal activities like going out with my friends. I thought to myself, “Maybe I have a kidney stone or an ovarian cyst again – I’ll see a doctor if I still don’t feel well on Monday.”

As someone with chronic bladder pain, the only tangible indication I have for when something is really wrong is when I have blood in my urine – and that’s exactly what happened. But by then, it was almost too late.

In the time it took for me to notice the bladder pain to the time I arrived at the ER, I was septic with a serious kidney infection.

For those of you who aren’t familiar, that means the infection in my kidneys was starting to spread throughout my bloodstream. My kidneys were shutting down from a massive infection.

I barely had my hospital gown on when the nurses had hooked me up to two IVs, IV antibiotics, and a heart monitor. When I realized the “sepsis patient” they were talking about was me, I was in shock. I didn’t feel that out of the ordinary, how could this have happened?

I learned that my endo and IC pain had masked the pain of a bad kidney infection that then entered my blood stream. Your first question is probably, “Why didn’t you go in earlier?” Well, my answer to that is, doctors have subconsciously conditioned me into thinking that my flare-up pain (about an eight to nine) is nothing to go to the hospital for. Most of them treat me like a drug addict and send me home. The rest just reassure me that, “It’s just endo.”

That psychological struggle of whether or not to go to the ER is something I deal with often. I guess I’m writing this article to send two messages:

1. Doctors have conditioned those of us with chronic pain to stay at home and “suck it up” instead of listening to our bodies when we think something’s wrong. That’s not OK and we need to change that by changing the stigma and speaking up.

2. Endometriosis (and many other chronic conditions) is a horrible, soul crushing disease sometimes. I want others to be aware that while endo alone won’t kill you, the pain can mask something that will. I was lucky I got to the ER when I did, but if I had a busy day or important meeting and ignored my pain longer, this story could have had a very different ending.

Pay attention to what your body is telling you because having to deal with doctors who don’t “get it” is probably better than wondering if something really is wrong.

Getty Image by amenic181

Originally published: October 11, 2018
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