adventures in getting sick and staying sick

[Fair warning: semi-graphic image of female anatomy at the bottom of this post. But it's sort of cartoonish and not a picture of a real body. It's not that bad. But If you scroll all the way down and get freaked out, don't say I didn't warn you.]

It is only Post Three and I already sort of hate this blog thing. I told myself I was going to do it weekly, because any less frequently than that and I knew I wouldn't do it at all. So I wrote 75% of a post last week, about relationships and how to deal with a box of root beer in a closet, because last time I said that basically only four things have happened in the last year and a half, and "learning how to relationship" has been one of them. But that post turned out all sappy and weird, so I said to myself, you can't post this! I guess that leaves the fourth thing. Fourth, both chronologically and according to the order in which I want to write about them.

About 8 months ago, I got sick. And I stayed sick. And no one could figure out what was wrong with me. At first, I gave it a few days and thought "it will get better, it's fine, stop worrying." That's what other people told me, and when it comes to these things, other people's opinions are often more trustworthy than my own. But I knew this wasn't like that. Something was wrong. Sometimes you have to trust what your body is telling you.

This illness, and the process of getting a diagnosis, has done so much stuff to my mind. And there have been so many feelings. But this is the summary version of the facts of what happened. After a week of not feeling right, I went to urgent care, and they took some of my pee and told me I was fine and to go home. Over the next few weeks, I went to the ER three different times. I got a transvaginal ultrasound, several X-rays, a CT scan of my brain and abdomen. In the following months, I saw a urologist and let him stick a camera inside my bladder. I went to a gastroenterologist and he stuck a camera in my colon and another one down my throat and into my stomach. (I woke up from anesthesia to find a straw in my mouth, and the other end of the straw in a cup of coffee. Because Mike knows me well. So I told all the nurses that I love him and he makes me tacos. Pretty sure it was "and" and not "because" but I really couldn't say. The only reason I even know any of that happened is that Mike told me later.) I went to my gynecologist and she said everything was probably normal and put me on hormonal birth control. None of these doctors could find anything wrong. Sometimes it was "Obviously there is something going on here, but this test didn't show it. Please call me if you find out what's wrong. I'm curious." A few times, it was "there is nothing wrong with you." (What is that?? Ego?) And once, it was "This is all in your head. You should go see a psychiatrist." (I could write whole posts about that one.) 

The closest thing I got to a suggestion of where to go next was from my urologist, who said it might be endometriosis. That's that thing where the lining of your uterus starts growing in places where it's not supposed to, causing a potentially intense amount of pain, and impeding normal function of surrounding organs. So I made a (third) gynecology appointment, but my doctor was out of the office, so I could only talk to her (whatever they are there) nurse practitioner person. She basically said "no it can't possibly be endo, go home." (Ok none of these people actually said "go home" in those actual words.) I was like how can you know that? I've never seen you before, you don't know me!" All sassy in my head. Not taking "no" for an answer. Not taking "I don't know" for an answer. So I went back to the gynecologist when the gynecologist was actually there. She listened to me. She said to give the birth control a couple more months to see if it would help, and if not, we could think about surgery to look for endometriosis, or like three or four other things that could be wrong but probably weren't. After those couple months, once it was clear that birth control wasn't going to solve all my problems (or really any of them), I made gyn appt number five(?). I came out of that appointment with "laparoscopic surgery" on my calendar for three weeks later.

My worst fear was not of the surgery itself, or that there would be some terrible kind of complication and I'd be worse off than before, but rather that I'd wake up and hear "We didn't find anything." So, I put my fears on a shelf, and we went to the hospital, super early in the morning, which is totally the best time because it's super quiet and there is no waiting. I got an IV (definitely the worst part of basically any medical anything for me) and after that, stuff was pretty chill. I got "a drug that might make you feel a little drunk but it will relax you" (Not sure why doctors don't just automatically tell you the actual name of what drugs they're giving you. It's like you have to pry it out of them. Who do you think I am, I'm not a child, I know a few words. Wait, you're giving me Versed? Kthx sry we're good now.)  I got an anti-nausea patch behind my ear, which, for some reason, I made the doctor go through so much work to convince me to get. I think maybe that was post-Versed and that's why I was asking way too many questions. But that's probably not how it happened. I'm probably just neurotic. But I'm happy I got that patch. Anyway, post-Versed (possibly pre-weird-anti-nausea-ear-patch) the walls started shifting up and down and then I don't really remember anything until post-op, when I heard "We didn't really find anything wrong. There was this one little spot that we're going to biopsy but it is too small to be causing your problems." My worst fear about the surgery came true, but I was actually a little bit okay with it at the time, but in retrospect that's probably because there was Dilaudid involved. Definitely love me some hydromorphone. Apparently the first thing I said when I woke up was "I love Mike, and I love anesthesia." No recollection. The doctor thought it was pretty funny. Glad that I got my priorities right, and left out the tacos.

One thing I'd gotten better at by that point was accepting things I didn't want to hear. I was pretty used to it. So a couple more weeks went by before my post-op appointment. Recovery was not the best thing and not the worst thing. (Although, six weeks later, I'm just now to the point where working an 8 hour day doesn't feel like a death sentence.) On the day of my post-op, I was totally expecting to just go in there and hear "so yeah as we said, we didn't find anything, glad you're healing okay" and I was going to be okay with that. But what actually happened was the doctor came into the room and sat down and said "So we got the pathology report back and it turns out it is endometriosis." What?!? I'm not sure what the look on my face was, but the doctor's response was "I know, I was surprised too!" Umm I don't think "surprised" quite covers it but okay yeah. She told me I have two treatment options: the first is to get Lupron injections, to induce medical menopause. The second is to get pregnant. Nope. Not an option. Even more expensive than Lupron, and also uhhh when you're done you have this other human to like take care of for the rest of your life. That's a pretty intense side effect. Nope. Oh yeah and plus with either of these "treatments," the endometriosis will almost certainly come back within a few months to a few years at most. But the kicker is: she is still not sure that endo is causing my symptoms. I was so relieved to have a diagnosis, but discouraged to realize that it might not be the diagnosis. And the treatment is so extreme and not guaranteed to work long-term. I went home and did enough reading online about Lupron to realize that it sounds like an awful idea and it has ruined so many people's lives. Stuff in forums like "DON'T TAKE THIS DRUG EVER. NOT EVEN ONCE." and "IT HAS RUINED MY LIFE." There's a petition to Congress to get it off the market. People have written thousands of letters about it. So yeah. Nope. 

I did some more reading online about natural ways to treat endo. No one is exactly sure what causes it, but a good theory is that it is a disease of estrogen dominance, and there are supplements out there that are meant to improve the body's metabolism of the "bad" kinds of estrogen. No one has really scienced about them, but at this point, I'll try anything that doesn't have a huge chance of messing up the rest of my life. At my post-post-op appointment, I asked my doctor about the estrogen metabolism thing, to confirm that I wouldn't permanently damage anything by trying some supplements. Because of course you can never get them to say that "natural supplements" are a good idea. But she's fine with it. At that appointment, she also told me that my round ligaments are abnormally long, which could cause my uterus to tilt backwards, and that if I wanted to, I could think about having surgery at some point to shorten them. And that my uterus has increased vascularity. She showed me my uterus side by side with a "normal" one, and omg my uterus looks like an evil monster that wants to take over everything. The normal one looks totally docile, like something I'd be completely happy to let live inside of me. It is puzzling to me why I learned these things at a post-post-op appointment instead of at the post-op appointment or the actual op. So I made an appointment with a urogynecologist (because you cannot have enough specialists) for a few weeks from now, to get a second set of eyes on things, and a second opinion for treatment options. 

And that, dear friends and family, is where things stand. 

Promised semi-graphic cartoon picture of what's happening here: