I feel defeated.

I know that’s not my identity, not who I am… but knowing something in my head and feeling that way in my life, in my heart, are two very different things. So while I know, in my head, that I am free, that I have victory, that I am not this broken body I live in… that, shoot, as bodies go, this body isn’t so broken, actually… I don’t feel that way.

For those of you who need a little catching up… because, let’s face it, I’ve kind of let things slip of late… let’s do a brief recap. Well, we’ll try to keep it brief. And while I’m not going to pull any punches on the medical descriptions, I won’t be gory or graphic unnecessarily, either.

Last summer (2008), when I was working in the church office, the gals realized that I hadn’t had a menstrual cycle in a year… or more. They insisted I go see a gynecologist. I was not excited about this prospect; I’ve had AWFUL experiences with gynecologists. October rolled around, and I was getting ready to leave the country on a marvelous vacation meant to celebrate my 10 year wedding anniversary (it had been in May), and I realized that I wanted to celebrate many more anniversaries with my husband… and that meant being an adult, sucking it up, and doing something I didn’t want to do. I went and made an appointment.

I trembled in fear, literally SHOOK, at that first appointment. But the nurse was awesome as I explained my history, the doctor was awesome and patient with me. She was alarmed at the lack of a menses, and explained that this was a serious thing. She wanted to do an endometrial biopsy, but was willing to wait, rather than do it this first time. She also agreed to let me get my awesome trip behind me before we tried step one of getting my reproductive house of cards in order… but I was to start as soon as I came home.

That was November of 2008. Things didn’t go quite the way we hoped, but she’d warned me it might be rough. I wound up in the ER with heavy bleeding (and a smart-alec nurse who told me that “this is normal”. Um, no. I know MY normal, and this was not MY normal, and the doctor had told me that MY normal was not normal or safe. So no, you can try to peddle it, but I’m not buying). My blood tests came back normal, they gave me pain pills for the cramps, and sent me home. The hormone pills she gave me eventually stopped it.

I started on my own, without the medicine this time, in December. I never stopped cramping. But it was heavier this time, and when I nearly passed out in the pharmacy, I went back to the ER… this was way worse (No one tried telling me it was normal this time). We tried higher doses of the hormone, different formulations, nothing stopped it. And I was still cramping so much and so hard that I was on narcotics nearly all the time.

The doctor ordered an ultrasound and we discussed options. We were worried we might have to do a hysterectomy, but the endometrial biopsy came back clear of cancer cells. January 6, I had a D&C and the doctor put in a mirena IUD… it would release a small amount of hormone all the time and should keep me from having a menses, but without being dangerous. It might be a rough initial adjustment, I was warned, but we could leave it there for 5 years. This was promising.

As I went to bed on January 9, I hurt so bad I was climbing and writhing in pain. The strongest pain pills in the house did nothing for the pain. We went back to the ER, where the nurse who tried to tell me my abnormal bleeding was normal was back… and worse. They gave me stronger drugs, took pictures, and couldn’t find the source of the pain. I hobbled out of the hospital, John drove me home, and the doctor saw me a few days later.

It was the implant. It was positioned right… but my body hated it. I struggled to adjust to it for almost 3 months. Finally, in mid March, having been on narcotic pain meds since November, the doctor removed the implant in her office. I went back to the pills. I got through a rough March, but then I stopped cramping.

April rolled around, and while I was allowed to skip a month, I opted not to… I wanted to keep the ground I’d gained. I took the medicine. I cramped, and the bleeding was heavier. I worried. The cramps and bleeding ran its course.

May came, and again, I didn’t skip… not when April had been heavier. May was worse still. This was not a good sign; I was going to be as bad as when we’d started before long. I went in to see the doctor.

At this point, I have not gone a month without calling her or physically seeing her in the office yet. Not ONE MONTH. We plan to do the hormone shot, Depo-provera. It should do the same thing the implant did, just in shorter bursts, and without an implant. If this doesn’t work, the next step is endometrial ablation… she’d insert a net into my uterus and burn off the lining. We’re not certain it will work, or work well, but it’s not the drastic measure a hysterectomy would be.

I come back after a trip to visit family and friends and get the shot and enter hormone hell. By mid July, I’m cramping awfully. By August 6, I lose the ability to sit or bend comfortably. We’re flummoxed. An ultrasound reveals only that my uterus is larger. We schedule an exploratory laparoscopy for 10 September to see what’s going on… but by now, as one full year of care approaches, hysterectomy is finally back on the table. There’s no longer any reason to believe that the ablation will help.

I do research to see what I’m facing with a hysterectomy, and find information on a term the doctor mentioned in January: adenomyosis. She tells me that it can’t be diagnosed without dissecting the uterus; as long as I have the uterus, I can’t be diagnosed… but I do seem to have a lot of the classic symptoms.

We go into surgery on the 10^th of September, and not really joking, I ask her if she’ll just do the hysterectomy then. I’ve pretty much decided that this is the only thing that will fix me. She laughs and says she can’t. The surgery, done through two tiny incisions, reveals the worst case scenario short of cancer: I’ve got advanced endometriosis. It’s actually moved my right ovary out of place… that’s what had me in such pain. She can’t remove it from the position she’s in, but I’m scheduled for an abdominal hysterectomy two weeks later.

A short 5 days later, I go get the flu and pneumonia vaccines. What I forgot was that I was 2 years early on the pneumonia shot. My white cells go crazy, I run a fever, and when I go to the doctor’s office, they send me to the ER for a battery of tests and antibiotics. I actually take 9 days of antibiotics before my surgery, and all for a reaction to a vaccine.

On 24 September, I go into surgery. My doctor removes the uterus, right ovary and fallopian tube, the endometriosis, looks at the left ovary (to see if there’s anything troublesome there) and starts working on removing my cervix. Alas, by this time, I’ve lost a unit of blood, and rather than risk my needing a transfusion, she decides to leave about half of my cervix there, and closes.

My recovery goes beautifully. I have the normal problems, waiting for my body to finish waking up. I do, however, get a strange complication. The lateral (side) femoral (thigh) cutaneous (skin) nerve in my left leg gets damaged… we think it’s a temporary thing (and so far, it does seem to be healing…). But the skin on my thigh is “on” and we can’t turn it off… so everything that touches it is agonizing. I suffer with it awhile, and then, visiting my neurologist (for headaches) mention it, and he prescribes a nerve drug that should help (and it has, actually… I can tell if I’ve had it or not, and I’m slowly weaning myself off it now).

I tear a stitch inside about 3 weeks out, but after an anxious weekend, the doctor decides I’m OK, and I’m back on track. By 2 November, she releases me back to “normal” life (since when is my life “normal”?). I continue to tear the occasional stitch, but they hurt less, and now that I know what it feels like, I worry less about it.

On November 11, John gets sick. I try to keep myself healthy. I seem to fail, waking the next morning with an upset stomach. But where his moved on to a cough… mine never did. In fact, that whole first week, it was really only when I was laying down that I got sick. I called my internist, and he called in some strong Dramamine for me. It didn’t help.

By November 25, I’ve been sick for 2 weeks. I see the doctor on call. He suggests, after an exam, that it may be an ulcer. He prescribes nexium, and tells me that after a week, I should see some results. A week later, I call my GYN, fearing that one of the times I tore stitches, I did some damage… and that’s why I’m on week 3 of nausea all the time. Besides, by now, I’m getting weak if I stand up too long… like while I walk through a supermarket. She refers me to my internist, who pokes and prods, and prescribes antibiotics and schedules me for a CT scan, suggesting it might be an abscess or diverticulitis.

The CT scan shows neither. No, instead, my little drama of reproductive angst, it seems, didn’t end when MOST of my reproductive organs were removed. Let me remind you of my symptoms: nausea, headaches, weakness. It wasn’t until the doctor poked at me before the scan that it hurt there. So imagine my surprise when they told me Friday “You have a large Ovarian Cyst. Follow up with your GYN in 4 weeks.”

Imagine my greater displeasure when I woke up Saturday and could feel it without pokeing at it. Or when I laid down Sunday for a nap, rolled over on it, and felt it. Or yesterday, when I could feel it just sitting still. Or today, when it hurt so much, so constantly, that I had to start taking narcotics, AGAIN.

I’ve got an appointment for next Tuesday. I’m hoping I’m to the part of ovarian cysts I’m familiar with, where they hurt for several days and then rupture and stop hurting. If not, then when I go in next Tuesday, I will be begging her to cut me open. AGAIN. For the fourth time this year. “Please use sharp cutting instruments on me. Not because I’m fond of them, but because pain is the suck, and I’m tired of the constant nausea and the narcotics and the not going away!”

I’ve got an appointment with an endocrinologist in February… someone who specialises in me. I’m really looking forward to seeing her. “Please help me stop being broken so that I can be, oh, I don’t know, some variation of resembling normal?”

The insult to all of this injury: The growing phobia that no matter what we do, it’s at best a stopgap until the next thing breaks. That this won’t fix it. And worse: I have to fight with insurance and billing offices to get it all correctly paid for, whether it worked or not. I have a bill here that the billing office says I owe. The insurance company says I don’t. Now I just need them to AGREE that I don’t!

So here I am. Facing my second Christmas in pain, even after the hysterectomy that was supposed to fix it. Knowing that I have medical bills breathing down my throat… the ones I DO owe, the ones they say I owe and don’t, and the ones still coming.

And you know what? I’m tired. I’m tired of it all. I’m tired of being sick. I’m tired of being tired. I’m tired of being poked and prodded and pulled this way and that and fighting the companies over bills for procedures that didn’t work.

Can I be done now? There’s a victory here, somewhere. I know there has to be. I just can’t see it, and I’m too tired, too weak, too broken to keep dragging myself through the garbage to find it. If you need me, I’ll be in the heap, next to Job.

No related posts.

Related posts brought to you by Yet Another Related Posts Plugin.

Tagged as: broken, hysterectomy, I Live On The Work Bench, medical, ovarian cyst, tired