Pain. So much of it. Rorsach shapes of pain bloom in my lower back and spread their tendrils throughout my lower limbs. I shift as I lay in this bed, and my throat emits an involuntary gasp as an unexpected stab shoots through my hips. I’m recovering from epidural steroid injections. I know I will be fine tomorrow, but today…..it’s rough. I’m hoping this third round will have the accumulative effect the doctor is hoping for, and will work to calm the pain from the herniated discs in my lumbar region. But lately I’m beginning to suspect that history is repeating itself, and the discs, while problematic, are not the true cause of my back and leg pain.
Ironically, I have no abdominal pain; four months ago my gynecologist removed implants and scar tissue from outside of my uterus, in particular my bowels. I was a walking craft project, with various materials stuck to me—I liken it to that spider web material people use to cover their bushes during Halloween. It was stuck to my bowels with the bio equivalent of Elmers glue. Now that my adhesions have been removed, I was put on Lupron, then Zoladex . I am not in abdominal pain because I am being injected every month with what amounts to hormone based chemotherapy. But I do not have cancer. I have what some doctors refer to as benign cancer; I have endometriosis. What the medical community used to refer to as “wandering womb”. Like it might just leave my body and grab the keys and drive off into the sunset. But I like the sound of a wandering womb. It feels like that is exactly what is happening. Tissue that should stay in my uterus doesn’t. It wanders into other parts of my body, uninvited, wreaking havoc on organs that I rely on to keep me healthy and functioning.
There’s a science fiction element to endometriosis that is so compelling to me and yet so confounding to the medical community. If you suffer from endometriosis, you have no doubt experienced being the mysterious cause of this confusion. And even when you tell doctors with language that equates to a flashing red light—“I HAVE ENDOMETRIOSIS”—professionals still miss and get it wrong, amounting to years of living with conditions that could have been solved through excision of the tissue—assuming you can even get to it. Case and point: I called my gastroenterologist today, the one that had been treating me for three years until I moved cities. The one that had ordered a colonoscopy, an endoscopy, the one who tested me for celiac disease. I called him today to tell him that I had a lap in October and all of my bowel symptoms—the IBS, the painful cramping, the urgency—had been cured overnight. I got his nurse. She said to me, “yeah, that’s not the first time it’s been endo that’s caused all that.”
AWESOME. So why did I have to spend three years without answers? He couldn’t have let me in on that little gem of knowledge? Did it never occur to him that THIS IS MY LIFE?
So here I am, I can’t sit, I can’t stand, and I can’t lay down without my shadow. And in exchange for the abdominal pain, I’ve had the great pleasure of going into menopause. After years of the pill to treat PCOS, I had to stop because my endo had become too much. As a mother of two young boys, laying in bed for hours at a time is not an option, except that was exactly what I was doing. Dropping them at school, and coming home to bed. Up for a little while, do some housework, keep it just tidy enough, and then back to bed. Aleve, prescription pain killers to be able to exercise a little or cook dinner. This was not the life I had planned. This was not how I imagined I would be on the cusp of my 40s.
The pathetic bit is that I actually have been putting off a hysterectomy because I still held out hope that just maybe we could have another child. Knowing you’re done and actually removing one’s reproductive organs are two very different things. It’s final. And there is no guarantee I’ll actually be pain free. And what of the other problems that come with a hysterectomy? Increased risk of heart disease and osteoporosis? I’m afraid I’ll be trading pain for other health complications. But then I come back to the pain. I always do. I want the pain gone. And my desire to be pain free and be the mother those two little boys deserve is greater than any hypothetical child.
Those children are what keep me going. The thing about pain is that it’s so bipolar. On the one hand, it’s comfortable. I know it like an old friend, and hate it like an old enemy that just keeps hanging around. On the other, it’s dangerous. Enough of it on a daily basis, and you begin to wonder, what if….what if I had no more pain? And for a split second you are tempted by the promise of relief, only to realize that hope is what spurs you forward. Or in my case, a well-timed fart and laughter from my five year old.
I just want all of you suffering to know that you are NOT alone. For every doctor that misdiagnosed you, there are thousands more that have misdiagnosed a fellow sister. For every parent that didn’t listen to your moans, there are millions more who told their daughters to suck it up, that it’s just part of being a woman. For those of you who tried to open up to friends only to receive scoffs, or worse, blame for your part in the disease because you had multiple partners or wanted a career or whatever other malarkey they’ve come up with, you are not alone.
And when the pain gets too much, and when we feel we can’t continue another day, just remember: we’ve had a 100% success rate of making it another day so far. That’s pretty damn good.