Don't Cry

I love my family, I really do.  We're pretty close, or so I'd like to think.  But none of them really "get" my body, my life, my dysfunctional reproductive organs.  I think that's something every woman with endometriosis goes through.  Nobody seems to think it's "that bad" - unless they have it, or have seen you go through it.

My mother came from a home where her father was an ex-Marine and her mother cleaned houses her whole life.  Aches and pains were the status quo.  You took some Tylenol, shut up, and went on with your day.  Unless you had a fever over 102, a broken bone, bleeding that couldn't be stopped with super glue or a bandage, or were vomiting more than three times, you didn't go to the doctor.  

When I had my first ovarian cyst at thirteen, it went gangrenous due to having twisted upon itself.  I threw up every five minutes on the dot and got so pale and dehydrated my gums were a greyish blue.  Even then, my mom took me to my GP first instead of the hospital, following his advice for another six hours until she took me to the emergency room.  I didn't blame her for this - the GP actually wanted to wait longer for me to go to the ER.  (He thought it was a touch of the stomach flu.  Mom says he had a touch of the fucking stupid.)

In college, when I fainted walking from class to class, I'd just drink some water and "walk it off".  When I had ruptured ovarian cysts, I'd take ten Advil and lay in bed and cry.  I thought I was lazy.  That normal people didn't have these problems.  That if I tried really hard, someday I wouldn't be in constant pain.  That I wouldn't be fat.  That I wouldn't be afraid to move, afraid to go out for fear I'd be in pain and pass out, or get the crippling stomach pain that so often comes with endo.  Of course, I didn't know I had endometriosis or polycystic ovarian syndrome at the time.  I wouldn't be diagnosed with that until I was twenty-eight.  

There are days where I don't have to take painkillers, though they are few and far between.  I'm lucky enough where traditional Chinese medicine (acupuncture, herbs) has alleviated the stomach symptoms that are so often bros with endometriosis, that show up and hang out to add to the pain party.  But there are days like today, where it feels like someone's got a hold of my guts and is trying to rip them out of my belly button - that I want to weep at my work desk.

But I don't.  I don't ever cry when I'm in pain.  I've been in ERs where I've passed out on my way in the door, where I've been sheet white and writhing - and I don't cry.  I may whimper on occasion.  I mumble to myself, phrases that mean something at the time.  I rock back and forth.  I ball my hands into fists so hard I draw blood.  But I don't cry.

I feel guilty, but I rarely shed tears.

An Introdcution

I kind of feel like I should hand you all a bowl of popcorn because this story is long and ridiculous. It's kind of like The Hobbit, only with a lot less Ian McKellan.

ANYWAY. I'm Sarah, and I don't think I've had a single day where my female reproductive organs were active and NOT pissing me off. I got my period one day in summer when I was thirteen years old. And it just ... didn't stop. For the first year of my menstruating life, I bled for 25 days out of thirty. It was ridiculous, and led to me having anemia and needing fluids almost all the time. My well meaning GP at the time said my body was just "adjusting". Flash forward to September when I'm fourteen. I go to school, I come home, I have a snack. I'd been in pain all day, but that was ALREADY THE NORM for me. 

But this was different. I threw up, and ended up throwing up every ten minutes or so that whole night. The GP thought it was the flu, but my mom took me to the hospital. At fourteen, I ended up having my first ultrasound and my first pelvic. It ended up I had eight cysts on my left ovary, one that was grapefruit sized and had gone gangrenous. I had that out and was put on the pill. I'm still on the pill (not that specific one), but that's another story.

And the blood stopped. But the pain ... never really did. Once a year, I'd snap and I wouldn't be able to take it anymore and I'd go to the hospital. Most of the time I'd have a cyst that had ruptured to go along with my pain, but when I complained it was constant, year round, they said it was probably in my head. That went on for years. I remember fainting in an undergrad class from the pain, I remember flunking out of school because I was so exhausted and in so much pain I just couldn't. I remember taking a whole bottle of Advil in a week (one of the 200 count ones!) because dear god, nothing helped the pain.

And then, one day when I was twenty-nine, I went in for my fourth ovarian cyst removal lap surgery. When I woke up, and was wheeled to my recovery room, I was told the cyst was gone, and I had endometriosis. Then I was given some pretty pictures and sent home. The doctor told me that it would make my cramps worse. That's it.

I ended up having to do a lot of research on endo myself. I've had my appendix out because I had to go to the ER for endo pain and was told that it was probably my appendix. (I figured hell, either way, it's not like I need the appendix, may as well be safe. It wasn't infected.) I've been in the hospital for weeks while doctors did CT after CT thinking it was gallstones. Colonoscopies - it must be IBS. Benzies - it must be all in my head. I had a doctor tell me to my face that there was no way it could hurt this bad, that I was being a hysterical woman and my mother would be ashamed. (I may have told that man I'd sue him. I didn't, but I don't regret it.)

And now here we are. I'll be 34 in five days, and I'm still in pain more often than not. It's better than it used to be - acupuncture and TCM seems to actually work for me somewhat - but I'm still trying to find a gyno that can do a lap and excise this newest round of lesions. I'm sick of gynos saying that I should just "wait and see" with the pill. I've been on my current pill since 2006, I think I've been waiting a while.

I'm just ... really tired, I guess.