Let it Fester

I fully admit that my insides chose a bad time to rebel (again). Doctors are overworked if not by the coronavirus, by the world slowly trying to turn on its axis again and start moving at a normal pace. Being chronically ill I tend to put off little pains until something tells me it's serious.

I've been in the ER twice in the last month, I wish that this indicated to the slew of doctors I've seen and am seeing how serious this is. I've been struck down by two maladies: double vision causing extreme migraines and stomach pain and swelling that make me go from relatively flat stomached to third trimester pregnant having Braxton-Hicks contractions. Trying to write this while both are actively happening is one of the best things I've ever experienced in my life.

The first time I went into the ER, I informed the doctors that I hadn't had a menstrual period in four months, so I was a bit worried about that. The doctor listened to my worries and focused on my digestive system, which as far as he could tell was fine, though it had a few cysts. Going in the second time, I was now worried about my digestive system so naturally that doctor chose to ultrasound my menstrual system, but ran out of the room when I had questions, telling me to see a non emergancy doctor for more information.

The only reason I'd come back was because they'd told me to come back if it got worse. It's not that these doctors are bad doctors, it's that they're doing things within the scope of their practice. Doctors aren't at all how it works on TV and you very rarely get one who will actually take you through the steps of diagnosing you if you have a chronic problem overlapping several systems unless you have the gumption to push for it at least a little on your own.

When I was first being diagnosed with Ehlers-Danlos Syndrome everyone thought I was crazy- so much that I started to believe them. I couldn't eat (turns out my stomach had been malformed from the lack of collagen) my eyes and teeth were terrible for the same reason, I couldn't sleep on normal beds because not being able to lean against something hurt my ribs. I was exhausted and passing out. Headaches were constant as my spine compressed on itself.

It wasn't until two things were mentioned as asides by two doctors: one physical therapist mentioned to another that I dislocated easily and my mother mentioned to overhear, and the other being my optometrist assuring the person who had to make my contacts by hand that I didn't have Keratoconus, even though my eyes were as poorly shaped as they were. Somehow, this allowed my mother to look up EDS and bring us to a geneticist.

You have to be your own fighter. In this case, we think we know what's wrong again. For a long time I've been diagnosed with "Either endometriosis or polycystic ovary disease," it wasn't fully diagnosed on which because that requires surgery.

"I want it all out," I told every doctor ever. "So you can find out then."

"You'll change your mind, you're too young, you might get married," is the gist of the answers I usually got.

"Take birth control instead, it might treat it and will keep you from bleeding to death too." the last bit might be a bit of an exaggeration on my part, but it was the general sentiment of putting me on oral birth control.

Except, it may have almost killed me. Birth control is one of the reasons you can have Idiopathic Intracranial Hypertension, basically your head being blown so full of spinal fluid that either medication or a literal tube in your head has to pull it out. I responded well to medication but I've never responded well to birth control since. Pains that I've had in my stomach since childhood have become worse, periods have become either constant or not at all. I would honestly donate all of my woman parts if they weren't so genetically flawed. Let someone else mess with them.

So with my eyes slightly out of sync and my insides festering I wait to stand up to the next doctor and hope that she will take me seriously now that I'm 32, married to an asexual of the same biological sex who also doesn't want kids and have been in serious pain for what is now a month but when I see her will be two. That is if I don't break down and chain myself to the ER entrance. After all they keep telling me to come back when it gets worse.