The Endo Games

My name is Allyson, I'm 29, and I live in Houston. I was diagnosed with stage IV advanced endometriosis just after my 19th birthday and I've been battling ever since. I am mostly done recovering from three surgeries in 2016 but I'm just starting to figure out how to advocate for others.

[theendogames]

Getting through it.

There were moments where I honestly didn't think I'd survive. I'm not trying to be melodramatic. You are in pain so much larger than anything your disease has ever caused you, so much larger than any love or depression or fear you've ever known. And the drugs you're on to make it better make your brain so fuzzy that all you can think about is the now, the pain, the interminable black hole you're in. You know logically that you'll survive, but you can't imagine it. But this weekend, about 2 1/2 months after a 6.5 hour, four surgeon fiasco, I stood up all day and cooked Christmas dinner with my amazing friend. And it hurt a little and I had to sleep the whole next day, but I didn't have to take six pills to get through it. I ate ALL DAY LONG and didn't have to run to a bathroom every ten minutes because for the first time in years I could trust my intestines to work properly. When I survived losing my mom, I didn't know I could feel more lost than that. I didn't know that there was a deeper, blacker black hole to lose myself in. But I always climb out and I'm always better for it. I hope I never forget that. I hope I never forget how lucky I am to have had people who supported me when I couldn't stand. I hope you get the distinct blessing of knowing what it feels to be past the darkness, even if it's only for a little while.

[lifeinpoetry]

All their “helpful” comments imply that if I’d only do_____, my problems would be solved. Like it’s all within my grasp, able to be managed and mastered, if only I would try harder, longer, better. As I nod my head in polite and pathetic appreciation for their input, I scream inside, “Shut up. Shut up. Unless you’ve been lost in this particular section of hell yourself, don’t you dare try to give me directions.”

Martha Manning, from Undercurrents: A Life Beneath the Surface (via lifeinpoetry)

[theendogames]

Reminder

You don't owe anyone anything. Not your time or thoughts or reasons. Not your body or your affection or your attention or your good intentions. Definitely not your reasons. When you give, it is a gift. And those who would seek to convince you that they are owed anything from you do not have your best interests at heart. You shouldn't hold that against them, it's everyone's job to put themselves first. You shouldn't hold it against them, but that doesn't mean you have to give it up. You do not owe them anything.

[theendogames]

So THIS is what it's supposed to feel like?!?

I have my period right now and it doesn't feel like I'm going to die. Don't get me wrong, there's a lot of cramping and that is HIGHLY unpleasant. But there's no stabbing pain. And there's no nausea. There's no "I might need to make out a will because surely I'm about to die any moment." I have been having periods since I was 13 and I have never felt this before. That's 16 years, for anyone keeping track at home. So yes, it took six months, three surgeries, a total of eight weeks out of the office, and $4,000 but it may well have been worth it. Because I don't feel like someone is ripping my spine out very slowly. Finally, the girl with no hope meets the light at the end of a very, very long tunnel. And she smiles.

[theendogames]

Almost 8 whole weeks after surgery, my drain and the last of my stitches came out today. I am the happiest girl who ever happied. Now I have to wait for the Zquil to kick in (sleep cycle is still pretty jacked up) and do my skincare before bed. Best. Tuesday. Ever.

[theendogames]

I'm just too curious.

I don't understand people who can think of something they don't know and be content not knowing it. If I ever think "I wonder why..." my immediate reaction is to find out. And then people seemed amazed by how I know so many random things. I'm just curious about the world around me. Maybe it started with having a disease no one could really tell me a lot about. If I wanted to know what my body was doing and why (still a largely unanswered question) and what it was going to do, I had to go find answers myself. So now I do the same thing when I wonder why we refrigerate eggs. I think I'm more interesting for it.

[theendogames]

If you're well enough to care for a dog, get a dog. Emotional health is so important, particularly when your physical health is crap. Coming home to a warm, affectionate creature with limited needs outside of your love is a blessing. So many nights I come home fatigued, in pain, and stressed. Then this little booger runs up to me and is so darn excited just to see me and I feel a little better. Humans are nice and all, don't get me wrong, but they need so much. Dogs though? They just need food, water, a little grass to pee in, and your love. This beautiful smoosh is named Reilly and he is my favorite snuggler.

[theendogames]

Drinking my first cup of coffee in traffic on the way to work is such a luxury. Basically my whole adult life I've had to wait until I was near a bathroom. For someone who sucks at sleeping and loves coffee, this is a big ass deal.

[theendogames]

I'm a turkey.

They kept telling me that just because I would feel better didn't mean I would still have stamina and I did not listen. Shocker. Because I am by myself on thanksgiving this year, I decided to take the beast to the dog park so he could run around now that it's not blazing hot. We meandered for 45 minutes and I am EXHAUSTED. Note that I didn't say we ran around, I literally wandered slowly but just standing up that long was so tiring. I am slow and waddling, like a turkey. How appropriate. I am thankful for making it through three whole surgeries this year and for, by all accounts so far, being better for it. I am thankful that I was able to drink coffee yesterday and not get violently ill. I am thankful that I will get to resume some sort of a normal life soon. But right now, I am the most thankful for naps.

[theendogames]

Almost there, maybe.

I saw the general surgeon today and he is super happy with how I'm healing up. He's confident that next Thursday they can take the stitches out and, more importantly, they will most likely be able to take the drain out. That would be seven weeks with a JP drain stuck to my hip. Seven weeks of emptying blood and pus out of my body every two hours. Seven weeks of sleeping weird and waking up at 3 am because I've moved and the drain is pushing and painful. Seven weeks of weird looks every time I leave the house because I've got a tiny bag hanging out of my shirt. Seven weeks of straight up discomfort. Lord help us if it's longer than that. I might lose my mind. I get to go back to work tomorrow which is exciting and daunting, but at least I'll be part of the world again for a few hours before thanksgiving break. I feel like Ariel. I wanna be...where the people are.

[theendogames]

I CAN FLY!

Not really, but I CAN drive. After almost six weeks trapped in my apartment it might as well be flying. I'm going to get takeout for lunch today because I can! The emotional toll of recovery is so easy to overlook because the physical toll is front and center. You have to let your body heal, you have to be careful about bending down or sleeping certain ways or standing up too fast. No one warns you that your body will feel like prison and that your home will start to feel that way too. I have been stuck inside my (adorable) 650 sq foot apartment for almost SIX WEEKS. No one warns you how badly that will hurt. So I can drive again and it is a blessing. And I'm going to use that blessing to go get myself chipotle and a new mouth guard. Because I live a glamorous life.

[moonlittmusings]

And there will be nights when your life will fall apart and no one will notice the mornings you spend putting it back together.

[tinyspooniechick]

When the doctor genuinely cares about you

[theendogames]

I've been so lucky this round. I have so many attentive, loving, thoughtful doctors and surgeons taking care of me. I know from experience how rare that is.

[queenofbraces]

These days I don’t take naps to decrease my fatigue so much as I take naps to temporarily ignore it

[theendogames]

Preach.

[theendogames]

Advocacy

I am going to find something to do. I have to. I have to let girls know that unbearable pain is not normal, that pain during sex is not normal, that messed up bowel movements and lower back pain and vomiting are not normal. Periods aren't a walk in the park but they shouldn't be debilitating. They need to know so they can fight back when their friends, their parents, their doctors tell them they're just over reacting. It is NOT all in your head. You know your body, even when you're young, you have lived in it your whole life and you know when something is wrong. I don't know how I'm going to do it but I've got to do something. I don't want anyone else living my nightmare and the only way out of that is speaking, loudly, to anyone who will listen. If you've got suggestions, I'm listening.

[whatsuprubberduck]

I AM strong, but fuck I’m exhausted.

[sweetfrosti]

[theendogames]

Three surgeries and I still need this damn reminder.