**This post was crafted from two posts initially published on my Ko-Fi.
Early 2018: I was handed three papers, two new prescriptions, two lab orders, and an appointment reminder for my next procedure, then I was ushered out of the room. I blinked. Was I breathing? Was I crying? Had I even had the chance to speak during that appointment? I liked the doctor, but…
I had barely managed to say I was in pain. Then the doctor was talking. What about my story? The past surgeries, the past procedures, the illnesses, the nausea, the lack of sleep, the weakness, the fatigue, and golly gee, the pain.
So, I got the new meds, did the lab work, did the procedures, only to be told at the end–”you’re fine.”
Well, obviously, I wasn’t fine. (Did I mention the nausea, the fatigue, the pain?) And I was only getting worse.
Early 2019: Was I breathing? Was I crying? Had I really had the chance to explain my story and my symptoms during that appointment? Had I been heard?
“You’re not fine. But we can help.”
This time, the papers in my hand felt helpful and informative. The doctor had listened before talking and sharing his concerns. I hadn’t felt rushed out of the room. And, instead of rehashing old blood work and tests and bandaid medications, I had a next step towards diagnosis – surgery.
This post isn’t to describe my chronic illness in detail. It’s not to give you my full medical history. It’s not even to explain all the times I’ve felt helpless in a doctor’s office.
It’s about the fact that I’m moving forward.
So, tomorrow, I’m having outpatient laparoscopic surgery for endometriosis.
Quick low-down on endo (though I’ll share more if I get a diagnosis):
- It’s fairly common. 1 in 10 AFAB folx likely struggle with endo and the painful (often debilitating) symptoms that accompany it.
- It’s chronic. There is no cure, and there’s always a chance it will come back, even after surgical treatment. It can potentially be managed through diet, hormones, and symptom treatment.
- It’s uncertain. Currently, the only way to diagnose with certainty is through laparoscopic surgery. And it’s symptoms can frequently be attributed to other conditions, often meaning patients go years without a diagnosis.
- It affects a lot. It can screw with fertility. It can present gastrointestinal and genitourinary symptoms. Don’t even get me started on how it can effect menstruation…
So I’m having surgery to see IF I have it and to treat it if I do (essentially by cutting it out of there).
My doctors seem pretty certain now that we’ve settled on this as the potential culprit (after 8 years of searching). But there’s always the chance I have surgery and they find nothing. I’d be back to square one, which is scary.
The alternative? I have a chronic illness that I’ll have to manage for the rest of my life. Also scary.
So, it’s been a bit of a struggle waiting for this procedure. I scheduled it for my Mom’s spring break so she can be there to help (y’all, I’m a terrible patient, and I know it). But it’s been long enough for the anxieties to build about the unknowns. And long enough for me to have the worst pain flare I’ve had in two years. (Creative projects are on hold until after recovery.)
Basically, I’m functioning at about 20% of what I should be–what I remember being able to do. I used to be able to write more, perform more, think more, be more… I’m just hoping the surgery helps. There’s no reason to be afraid it won’t. Just that the unknown is scary.
(But for all of the things that are scary, money is one thing that’s not scary, thanks to all the help!! I’m so grateful for the generosity and encouragement from the community.)
I promise I’m gonna do my best to recover quickly and manage this (seriously–like, I’m gonna cut out Dr. Peppers). I want to feel capable of doing more–for me, for my projects, and the community. I want to be more.
And y’all, I could be unstoppable. I just feel it.
I appreciate the incredible support. If you’d be willing to send prayers, thoughts, vibes, or whatever you’re comfortable with on Tuesday, I’d so appreciate that too.
Let’s do this! Let’s take the step towards the unstoppable.