No One Else’s Problem: Becoming My Own Advocate in a Health Crisis

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In November 2019, I found myself in the ER with intense abdominal pain. I was sure it was my appendix. I hadn’t been feeling myself for about a week beforehand and my primary care doctor hadn’t quite put his finger on why, even after a CT scan.

He basically told me I must be experiencing some situational abdominal discomfort and I was fine.

I basically got a pat on the head.

You know those movies where the main character KNOWS something is wrong… knows it in her bones… but everyone else around her tells her she’s crazy? That there’s nothing wrong, what she is experiencing is “normal” or “just is.” I get so frustrated with movie plots like that. JUST LISTEN TO HER! She KNOWS something is up. This ISN’T normal!

I feel like I have been trapped in one of those movies for almost two years. 

I want to tell you about it so you can untrap yourself if you’re in one, too. Read on for a reminder that your health matters, mama. Don’t put yourself on the back burner.

XO,

Lindsay

 

Back to my 2019 ER visit: After tons of bloodwork and another CT scan, neither the ER doctor, nor the on-call OB/GYN had any answers. In fact, they kept pawning me off on each other.

They literally argued with each other over the phone in the hallway. Whose problem would I be?

Ultimately, unfortunately, I became neither of their problem. 

I was discharged the next morning with zero answers, zero plan, but, at least, zero pain. 

Over the course of the next 18 months, I had several more episodes of this pain. Unrelenting, non-responsive to meds, radiating down my legs like fire, as if someone had taken a hot sword and just stuck it in my side. 

So, I basically lived with it.  Periodic debilitating pain that left me useless for three or four days at a time.

While on a month-long family trip to Montana this past summer, the beast returned. 

It was the worst episode yet. I was in so much pain, I was rolling around on the ground and vomiting. 

My sister in law, a medical assistant, took one look at me and sent me to the ER with my husband. 

Let’s pause here for a minute. Why did it take my sister in law’s direction to convince me to go to the hospital? 

Why, as an adult, wouldn’t I have just gone? 

Short answer: I had been conditioned to believe that this wasn’t a big deal. Even though my pain was intense, there was nothing a doctor could do for me but dope me up and send me home. 

I didn’t want to incur the cost, cause the disruption to the whole family by me going, create inconvenience that my in-laws would have to watch my kids while I was gone, possibly for hours. 

Thankfully, I was overruled and we went.

Once at the ER, things went about as expected. I gave every provider the same run-down in my long saga of unexplained pain, had more blood drawn, more imaging done (I probably glow at this point). 

I explained that I was in Montana for another two weeks, heading home in early July. 

I wasn’t expecting the ER doc’s abrupt chastising at that fact. He said to me, “it probably wasn’t wise to leave home for so long when you have an unresolved medical issue.”

Um, what? 

I had repeatedly been told it was nothing, it was in my head, it was normal, it wasn’t serious, it could wait, I was his problem, no, I was her problem. 

Now, all of a sudden, I was an irresponsible patient bringing my problems to someone else’s door.

At least this time there were answers: a cyst the size of an egg attached to my right ovary, bleeding, possibly causing my ovary to twist and turn unnaturally (a delightful little thing called “torsion”). 

I awoke from surgery groggy and oh my gosh was I sore. But an okay sore – the hot knife pain was gone. The doctor came in and told me how tough I’d been. He said I had what he considered “a case of endometriosis I’d never wish on anyone.”

I’d never been diagnosed with endometriosis before. 

No one had ever even asked me about endometriosis symptoms or discussed it in any way.  Not one doctor in alllllllll of the doctors I’d encountered on this nearly two-year long journey ever mentioned it. 

It’s been about three months since my surgery and I’m still dealing with the pain but not nearly as badly.

I’m also more in control of my health. 

I’m back to exercising, drinking enough water, all the things that make my body feel good.  I own my health.

I’m still not ready for a hysterectomy, which was recommended to consider in the future, but I’ll be willing to pull the trigger if and when I need to. 

That will be my decision. 

I will own it. I will not let it (or passively allow it to not) happen. 

That’s my lesson from this experience…

I am my own best advocate. 

Be yours, always.

 

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