Breaking News: Breanna has a Pelvic Kidney!

I’m going to start this with a good old truth bomb. I don’t know what’s wrong with me. I know how life-altering the pain I feel is, I know how devastating the lack of answers is and I know what probably a dozen doctors have told me. But I still don’t know what’s wrong with me. That has made it incredibly difficult to tell anyone, even those closest to me, what I’m going through.

I like facts so let’s start with those. My kidney is in my pelvis. Weird, huh? You were actually born with yours there too but you’re probably a normal person whose moved up as you grew like they are supposed to.

When I was about 20 I went to hospital was a horrific UTI (get them dealt with ASAP, ladies) and the ultrasound tech nonchalantly told me my right kidney was lodged between some blood vessels in my pelvis. “Totally normal,” she said. “Happens to lots of people,” she informed me. “You probably won’t ever think of it again.” What a liar.

Since then I have landed in the emergency room give or take once every three months for about six years now. I’ve had dozens of ultrasounds (internal and external), enough bloodwork to satisfy a vampire, a CT scan, a renal exam (where you get to see inside your own kidney!), a barium enema (gross) and I’ve become a pro at peeing in those little plastic cups. All of that and no diagnosis.

The enema told them it wasn’t IBS at they thought. An exploratory laparoscopic surgery told them it wasn’t endometriosis as they thought. The ultrasounds showed my kidney is covered in cysts but apparently that’s normal. And every other test has just resulted in the shrugging emoji. About a year ago an urologist told me it looks like that the placement of my kidney is probably kinking my urethra every now and then making everything that’s supposed to be flowing into my bladder back up into my kidney ….but it wasn’t definitive enough to go in and fix it.

Instead, for the past six years I have had chronic pain. It starts with a little cramp in my side and within an hour it feels worse than what I imagine it would be like if someone stabbed you directly in your pelvis with a rusty knife. That gets progressively worse for about 18 – 48 hours depending on the episode. As if that weren’t enough, the pain is so bad I vomit. For the same amount of time. Everything I have ever eaten (mostly coffee and chocolate, TBH.) All I can do is writher in pain, scream, cry and beg for relief. It takes a long time to come.

It’s awful. I hate every second of it. The worst part is not knowing what’s actually going on. Is there something life-threatening happening? Puking that much CANNOT be good for you. Will I ever be able to have children? Again, all questions left unanswered.

But here’s what I do know. On the days I’m not in a dark hole of pain … I try to live. I try to run and eat and do laundry and see friends. I know that the pain is coming and I want to capitalize on the days where I can even just shower. I also know how other people feel. Nothing gives you the kind of empathy I have now like looking over at the person in the ER next to you and seeing they’re hurting too. And I know the power in being your own advocate. On my healthy days I dread going to the doctor because it seems pointless. But I keep going because those episodes aren’t worth the convenience of staying silent.

So while I wait for answers, I hope to be more open. To be more willing to share my story, even though it’s an incomplete one. Turns out, there’s no shame in that.

- Breanna Karstens-Smith