Turn and Face the Strange

10:32 AM

Why is my body deformed?
If you want proof of how quickly endometriosis can turn around and bite you, look no further than this photo of me jumping in a trampoline park last weekend. I also kind of look like an overjoyed demon, so that's cool. I had woken up feeling pretty okay that day and decided to be an adult with my husband, a fellow endo sister and her husband by jumping on trampolines all day.

Fast-forward 24 hours later, and I was down for the count. I thought that maybe it was just from trampolining for an hour, which (shocking to me) kind of feels like running a marathon but jumping all of it. My husband and I made the mistake of buying a two-hour pass the first time we went to this place...

But one day turned into two... which turned into a full week of pain. And then I realized something. This pain feels different than usual.

Okay, don't panic. Take a symptom inventory. 
Stomach? Ehhh same ol'.
Left ovary? Also about the same, although it hurts a little more than usual. 
Right ovary? Ouch. Owww owww it's radiating down my leg. Uhhh that's certainly new... 
Rest of the uterus? WHY DOES MY ENTIRE UTERUS HURT?! ALL OF IT?!?

My endometriosis was found on and around my left ovary and burned off fairly easily. But since I did not see an excision specialist, there is a high likelihood of recurrence and of the endo spreading. I'm honestly not even sure if there is an excision specialist in my state... But if you happen to know a good specialist in the Midwest, hit me up.

I knew that, which is why I'd been holding my breath ever since my one-year endo anniversary came and passed. I looked at myself as a ticking time-bomb, and it's partially why I've devoted so much effort and energy to working out. If I can stave off the pain - which exercise often can do - then maybe I won't need another surgery. At least not this soon.

So anyway, up until recently, my pain had mostly hung out around my left ovary with occasional pain in other places. Oh, and with pain shooting down to my left knee. That leads me to believe there's a spot putting pressure on my sciatic nerve, but hey, I'm no doctor. I just diagnosed myself on Google...

Another fun fact. Endometriosis can spread to organs outside of the reproductive system. Oftentimes, implants accumulate on the bladder, bowel and other nearby areas. Without subjecting you to gross details since I do that enough, I'm pretty sure the endo has spread to my bowel.

What really sucks about endometriosis is that I can have a laundry list of symptoms, and I still will have absolutely no idea what's going on until someone cuts me open. As I learned the first time around, ultrasounds and pelvic exams will generally reveal absolutely nothing about the present state of my condition. Only a laparoscopy.

So I spent a lot of the week laying on the couch, trying not to feel sorry for myself. But finally, I broke down last night after feeling too crappy to make it to the gym for the third or fourth time that week. I didn't cry, since at that point I was too cranky to do so, but I threw a pillow off the couch, dramatically flopped my arms over my eyes and so eloquently ranted:

"Ughhhhh WHYYYY is this disease so stupid and pointless?! It makes NO. SENSE. A lot of illnesses are just because your body is confused, it's like, (insert high, squeaky voice) 'Ohhhh! I'm just trying to make new things for you because I'm a good body, and I think you need this!' But NO! NOT THIS ONE. It's seriously the dumbest disease EVER. It's all, 'Here! Have some endo because I don't want to be a normally functioning uterus anymore! I want to be in pain ALL the time, and also, let's NEVER make babies and be forced to pay a crap-ton of money to making sure I function like a normal organ should! IT'S. SO. DUMB.'"

My supportive husband listened sympathetically while trying not to pay attention to the much more interesting and well-written show that was on TV. I couldn't blame him. I was being a bit over-dramatic. There are plenty of people I know who are sicker and have more to complain about than I do, although I never like it when people say that about their own conditions to me.

But I had enough that week. I was exhausted. It was a fight to get out of bed every morning, and I'd probably have kept sleeping if it weren't for my dog gnawing at my hair and pawing my face. And I had work obligations that suddenly became harder to  deal with, now that my changing symptoms were taking over the majority of my mental energy. (I also was pretty pissed about my state defeating a tampon tax exemption that morning, but that's another story for another day...)

I'm an impatient person sometimes. I get frustrated when my emails aren't answered within minutes. I yell at traffic jams, and I roll my eyes very obviously when people walk too slowly. I also apparently belittle my uterus when it's not being a productive member of the House of Tracy. I don't deal well with ambiguity, and I hate not having all the information that I need.

But that's the reality of endometriosis and other chronic illnesses. In fact, this blog post doesn't have a happy ending where I learned something about myself and resolved to be more positive and a better sick person. I'm still angry. And it's okay to be angry, as long as you don't stay there forever.

So I'm getting ready for this weekend and next week, picking up some disposable heating pads and hoping that Aleve will get me through until my ob-gyn appointment because it's the only painkiller I have. It's hard to stay strong when the odds are so stacked against you, and you've been "strong" for way too long. But sometimes, you don't have a choice. You just keep your head down and power through.

And if that fails, that's why there are electric blankets, ergonomic pillows and naps. And David Bowie records.

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2 comments

  1. I feel for you, I really do. My symptoms started out only around my period, then shifted to daily pain. That was ages ago. I have been in near daily pain for about 5-6 years now. I hope your week long pain just a fluke from the trampoline fun, you just merely over excited your endo minions. You know, like when you come back from vacation and are so crabby and exhausted from all that fun you were having. That's what I am hoping is going on for you. ;)

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    1. Thank you so much for your well-wishes! I'm feeling better than I did last week but still keeping an eye on my symptoms. I truly hope you've been able to find some relief from your daily pain. As we endo sisters know too well, it makes normal things so much more difficult when your body is fighting you.

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