Insomnia

I've never slept normally.  I can't blame my insomnia on endometriosis; I've never had a good night's sleep like a normal person, even when I was a child.  But now that my nights are pain blue, aching grey - now I do blame them on my illness.

Right now: my head hurts because I'm coming down with yet another cold (endometriosis is theorized to be an autoimmune disease, and there's been some correlation between it and poor immune system function that's being researched).  My pelvis feels like my intestines are being slowly tugged through my belly button.  My hip is on fire.  My back has been on fire all day.  I want to sleep, but I don't.

Not just because of pain, but also because of fear.  I'm so scared I won't find a job.  I'm so scared that if I do find a job, I won't keep it long because I'm so ill.  I'm scared I'll never get better and lose the friends and family I've managed to retain through fighting tooth and nail.

I'm exhausted.  But I can't sleep. 

So Sick of Being Sick

I had my first ovarian cyst when I was fourteen.  Like, I got my period when I was thirteen, and then it just ... didn't stop until I was fourteen.  Then one day I came home from school and started throwing up every five minutes.  I went to the ER, they found out I had a cyst that was going gangrenous on my left ovary.  I went from the girl who'd never even held hands to the girl who'd had three pelvic examinations in one day.  I had my first surgery then, and the day after was put on hormonal birth control.  I was told I'd never have children.

Since then, I've always had painful periods.  I'm not talking "take some Midol and get over it" periods.  I'm talking throwing up.  Fainting.  Going to the hospital gritting my teeth and biting my lip bloody because I am going to scream if I don't periods.  This is my norm.  This has always been my norm.  I was told all through my teens and early twenties that this was what all women went through.  I was told that I was overreacting.  I was also told that yes, it sucked that I got ovarian cysts about the size of a grapefruit on my left ovaryevery other month, and that it probably did hurt when they ruptured.  (Cysts are frequent among those with endometriosis.)  I was told I might have PCOS (polycystic ovarian syndrome) and that the only treatment for that was - you guessed it, the pill.

Doctors only really started listening to me in my late twenties.  When I was twenty-eight I moved to Houston, and over the course of two years, I had two grapefruit sized cysts on my left ovary removed.  That means I was having surgery annually.  After the first surgery, the doctor said that he "saw some endometrial lesions" but they were too close to my ureter and he "wasn't confident touching them".  But he also said they probably wouldn't hurt.  That they would be okay, because I was on the pill.  He also said he wouldn't take out my ovary.  I found another gyno.  He took out my left ovary and fallopian tube, but also said that endo shouldn't be an issue.  I was on the pill!

Right.

In 2013, I was hospitalized twice.  I was in the ER, writhing with pain, fainting with it, seven times.  SEVEN.  I also think I gave up hope then.  In a desparate bid to have a better life, I moved to Chicago with my BFF.  I'm happier here, but no less ill.  So, here's the part you probably know about.  I was hospitalized in June, and the doctor that saw me said that he was pretty sure it was endo.  He referred me to a pelvic pain specialist.  We'll call him Dick.  Dick prescribed me nerve drugs, muscle relaxants, and to lose weight.  He said that yeah, it was probably endo, but all that stuff would help.  I'm sure you can guess what happened.  It didn't help.  The nerve drugs made me incontinent, and I was still in pain.  Only now I was in pain and leaking.  Also, I don't eat a lot on any given day anyway because pain makes me nauseated.  Plus, it's super hard to exercise and do yoga and all the lovely things he wanted me to do when I'm curled up in a ball with a heating pad.

So I went to get a second opinion.  This doctor is a wonderful person.  She's kind, and she was smart enough to realize that nobody had gotten a 100% definitive diagnosis of me having endometriosis.  So she did surgery.  This is what I had a month and a half ago.  She found endometriosis.  She found that it was creating adhesions - essentially, since the endometrial tissue has nowhere to go, it makes this thick, sorta ropey, almost scar looking tissue.  My uterus was fused to my colon.  I don't know how to express how scary that is.  Maybe caps will help.  MY UTERUS WAS FUSED TO MY COLON.  So much for the pill controlling things, right?

But here's the kicker - my pain never stopped.  So I asked second opinion doctor what to do, and she recommended that I go back to Dr. Dick.  So, I did.  That's when he told me that if I didn't trust him and got a second opinion, nothing with him was going to work, that if I'd "stuck to the plan" I'd be fine, that if I lost weight, my endo would go away.  (Fun fact, endo is an immune disorder, it can happen in people of any weight.  I'm not opposed to getting in better shape, but losing or reducing my pain would be great.)

So, here I am.  Still in pain, and hoping that my next doctor will actually help.  Because my pain never stopped.  MY PAIN NEVER STOPPED.  I can't think of a month where I've been totally pain free since I was twelve.  I'm thirty-four.  Twenty-two years of this shit.  And endo is a progressive disease.  It will only get worse.  It has been getting worse.  It's absoblutely terrifying to be given Percocet for pain and have it not even touch it.  It's terrifying to need Dillaudid in high doses every two hours in order to be comfortable.  I don't even bother with Advil or Tylenol anymore because I'm sure my liver and stomach are pretty important to being alive.  (One day, I was really hurting and had to go to work, so I took eight.  Nothing.  It was like taking Tic-Tacs to combat pain.)

I've lost every job I've ever had (and most of them I was good at, and a couple I even enjoyed) to this illness.  No employer wants to hear that you have to work from home two weeks of every month.  I'm looking into jobs I can do from home.  Or disability.  But really, I just want respite.  From the pain, from feeling like a burden, from being scared that tomorrow will be worse

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.