I have no idea how long this is going to end up being, but I wanted to get it down on “paper” just in case someone else is going through something similar and wants to know if anyone can relate (because yes, I can).
About 18 months ago, I started having vague pain in my lower left abdomen, just a faint, bruise-like pain as I was trying to fall asleep. I could mostly ignore it except that last October, it got so bad that I couldn’t function, and I spent a morning in the ER over it, only for them to do a CT scan, observe that I hadn’t yet pooped that day, and diagnose me with a case of constipation that I should follow up with my gynecologist about (a.k.a., they had no fucking idea).
And I did. I’ve mentioned here before that my gynecologist is awesome. He’s one of those doctors who believes you when you say that you’re suffering, and offers you whatever avenues could possibly exist to alleviate that difficulty. When I was pregnant with the twins and started getting the really bad itching that led to an ICP diagnosis with Sam (albeit, at the very tail end of the pregnancy when I was ready to deliver anyway, and my body just said, “listen, get the kid out of me or I am going to turn myself inside out”), he believed that it was a real problem, even if the lab results didn’t reflect that, and referred me to whomever he could in order to get me treatment that worked.
(in the end, it didn’t matter a lot because not long after the itching started, Isaac decided that he was done with being stuck under his sister and I delivered them)
So his initial steps were (a) to get me a consult with an endocrinologist because my ovaries showed signs of being polycystic; (b) to get me a birth control prescription to try and regulate my menstrual cycle some; and (c) to get me a breast cancer risk assessment as an added bonus. And, admittedly, with the birth control, I wasn’t having as severe pain. It was still there, but it didn’t have the highs and the lows it had without the birth control. The problem was that I got super SUPER depressed (remember that?) and didn’t know if the birth control was to blame, and anyway, I was having so much breakthrough bleeding that the whole thing just seemed silly. I thought he’d said that I should stop the birth control when I saw him back in May/June for the depression, and he thought that the endocrinologist said that I should stop the birth control, but ultimately, the birth control stopped.
Now we’re getting into July/August. Early August, I suddenly had agonizing pelvic/abdominal pain, like the kind of pain where you feel like you can’t see or think or breathe when it’s happening. It lasted for three days, also around the time that I got depressed enough to need the partial hospitalization program. Well, tl;dr – I got my period on day three. A nasty period. One of those ones that’s just…
The pain was bad enough that I could’ve probably gone to the ER for it, but here’s the thing: when you’ve been dismissed in an ER for pain you’re dealing with, you don’t trust them anymore. What were they going to do–give me another CT scan, tell me I was constipated again, tell me to go see my gynecologist? That would be $250 that we didn’t and still don’t have thrown towards an exercise in futility, so I just… skipped the middle man. I called my gynecologist again and said, in essence
I went to see him last week and had an extensive ultrasound, both transvaginal and abdominal. He found nothing on ultrasound but did notice that every time the probe or someone’s hand pressed on a specific spot on my left side, I would writhe in pain. Even if it wasn’t showing up on the ultrasound, something was clearly going on, and he decided that it would be a good idea to do laparoscopic surgery to investigate.
I haven’t had the surgery yet; it’s not for at least another three weeks, maybe more, since his calendar for the month is booked solid. BUT basically, it’s an exploratory surgery to see if I’ve got any endometriosis hanging out.
Endometriosis is a condition where bits of your uterine lining (called the endometrium) somehow end up other places in your pelvis and abdomen. They don’t die there, though, and instead grow and shrink with your cycle like the rest of your endometrium. And it’s extraordinarily painful. If you’ve gone through childbirth, think about the pain of transition, and that’s about where I am right now. If you haven’t, imagine a giant bull has driven its horns into your lower abdomen and is using them to pin you to a wall. Every time you start to get used to having giant bull horns in your abdomen, he wiggles a little bit, just to make sure you know that yes, you have been stabbed by a bull.
Or at least that’s what I’m feeling. The other fun thing about endometriosis is that you can’t really diagnose it without getting elbow deep in someone’s abdomen or giving them an MRI, and the surgery is kind of the more helpful step because if the doctor sees endometrial cells while poking around, they can just remove them right then and there and give some temporary remission of pain.
(they can do this either with a knife or with fire, but a knife is the preferred method because fire can make your organs stick together, apparently, which sounds roughly as unpleasant as what I’m going through now)
So THAT is going on, and I’ve been having this specific bout of pain for five days now–my usual pain relievers haven’t been cutting it at all, so it’s this frustrating mess of misery, where I’m feeling mentally in a place where I want to get out and walk, I want to walk for 30 minutes, I want to hop in the shower and get clean, but I can barely stay upright for more than 2-3 hours at a time. I’m frustrated because this is depression behavior and would/will make it so easy to slide back to a bad place, but I’m just physically having such a hard time right now.
And THEN, since I’m on day five of being stabbed in the abdomen by a large bull, I went to see my primary doctor today, and she pointed out that while she definitely agrees that it seems like endometriosis (we purposefully didn’t bring that up to see what she’d say, and she said it, so I felt validated), she also thinks I’ve got some sort of wonky thing going on with my hips/spine, because when she pressed on my spine to see how it was doing, it made me scream and writhe and also because I couldn’t lift my left leg very far without it shaking because it hurt so much.
Now I have Xrays being processed, a prescription for horse tranquilizer levels of ibuprofen, a physical therapy consult, a laparoscopy to be scheduled, a partial hospitalization program, and a partridge in a pear tree.
AND I’m homeschooling Sam.
Honestly, occupying a physical form is so dumb and pointless, and I would be much happier, I think, as a being of pure light and energy (that could still eat, because let’s be real, brownies almost make the horrifying ordeal of being mortal worth it).
I’ll hopefully have updates on all of this hot mess soon. Right now, I’m feeling just barely well enough to sit up and spew words on a page because the huge ibuprofen hasn’t worn off yet, but it will fairly soon, and then it’ll be back to wondering if my uterus really is wandering my body while possessed by the devil. In the meantime, please enjoy Sam’s back-to-school pictures and the knowledge that, despite everything, he’s done really REALLY well with the first two days of homeschool.