Let’s start with the bare facts, shall we?
I have stage four endometriosis. Instead of looking like this:
my internal lady parts look more like this:
…which is just as pleasant as it looks. Each time I ovulate, each time I menstruate, and sometimes because of just damned bad luck, I experience massive amounts of pain in my lower abdomen, groin, and even sometimes in my upper thighs. When I say “massive,” I’m not exaggerating. I’ve also suffered from kidney stones, supposedly worse than labor without the epidural, and can say that my endo pain is a lot worse than that. It’s an acidic, crippling pain that occasionally dies down enough to allow me full movement of my body. Sometimes, usually while exercising between ovulation and menstruation and vice versa, I even feel a lesion connecting two parts suddenly snap apart. Most of the time when my endo acts up, I’m as still as possible, moving only when absolutely necessary…and that is with the fun-level painkillers.
I don’t talk about this because I want to be a downer – I’m simply explaining what has led me to my decision…but more on that in a moment. First, a bit more history.
I started menstruating incredibly early, age 8 to be precise. At age 12, my periods had become regular, heavy enough to require multiple pads if I wasn’t able to change them every couple hours, and the cramps had begun. By the time I was a teenager, my parents were taking me in into the ER a few times a year due to the amount of pain I was in. There were times I couldn’t walk, couldn’t even speak as the pain was so excruciating.
To combat the pain of what my parents and I were told were normal periods, I was put on oral birth control when I was 14. Up until November of last year, I have been on one form of birth control or another, although (save for events in my early childhood) I was not and am not sexually active.
I was 18 when I finally had a name to put to the pain, not to mention the fact that finally I was told that the pain I was experiencing was not normal, all in my head, or just something I’d have to live with since I was a woman (yes, doctors have said each of these to me). We tried more aggressive treatments, even putting me into a medically induced menopause a couple of times (let me tell you, being a college student and dealing with hot flashes during finals is not ideal). Either the treatments wouldn’t work or the side effects were too much, the medication stopped, and the endo returned.
In November 2012, I had a laparoscopic surgery where my gyno burned off the lesions and officially diagnosed me with endometriosis stage IV. Endo doesn’t show on scans, it must be seen visibly to be truly diagnosed. Up until now, we had been operating under assumptions and the process of elimination.
The laparoscopy’s effects lasted about a year. As the endo started to return, it started to wrap around my urinary tract, making it even harder to pass the kidney stones I was already prone to (my blood has too much calcium – yeah, my luck when it comes to health is great).
In February of 2015, my IUD, the thing that had for the first time in my life granted me almost pain-free years, slipped. It caused an infection. I don’t blame my doctors for missing the fact that the IUD was what was making me sick, since I didn’t ever report the pelvic pain I was experiencing during this time. I simply thought the pain was just the groanings of the now-quieted endo. Finally, after another bout of crippling pain that led me to an ER visit where they found the IUD half-way out, I visited the same gynocologist that had first diagnosed me.
By this point, I had already been talking with my gynocologist about a hysterectomy. I knew it wouldn’t cure the endo, but I knew it could help. First, endo is thought to be caused by overflow of menstrual fluids into the abdominal cavity (this according to one of the doctors who actually knew what she was talking about), so this should keep more lesions from forming. Second, since the hysterectomy will be done laparoscopically, my doctor will also be able to remove the lesions that have grown since the last surgery. Third, my ability to have genetic children will not be affected as we will be leaving my ovaries intact meaning that, down the road, IVF with a surrogate would be an option if I wanted genetic children.
I’ve fought tooth and nail for this surgery. I’ve had doctors laugh in my face, saying I’m too young to comprehend what I’m giving up. I’ve had doctors cry, saying that my uterus is a gift that should be cherished. Needless to say, these doctors didn’t stay my doctors very long.
My gynocologist, bless him, has never protested my desire for this surgery. He has, however, made well and sure I am informed about what I’m doing and that we try everything before we go snippity-snip. I am glad that he will be the one wielding the scissors.
This brings me to why I’m writing. I’m 25, sexually inexperienced, and having a hysterectomy in a little over a week. This is unusual. Endometriosis, however, is not. I want people to be able to hear my story so they can use the knowledge in their own lives, whether for themselves or a loved one. I plan to blog through-out this process, from today (the day I scheduled the surgery) to the day they yank my uterus, to the day I’m fully healed. I can’t promise much, but it’s going to be one hell of a ride.