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
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