I actually used to like electives. You know, the classes no one could make you take? The ones where you got to explore in an academic setting the bits and pieces that made you you. My senior year of high school was divine. In addition to my usual butt-load of advanced placement (AP) courses, I indulged in taking both band and chorus. As drum major, band was my first love, but hanging out in the choir room with my primarily chorus kid friends and high school musical co-stars was a lot more exciting than, say, physics. Intro to Acting, the Philosophy of War and Peace, Film and History, Race in the Age of Empire – I spent my high school, college, and two graduate school careers embracing that word “elective.”
In the past several years, however, “elective” has been redefined. No longer the fun extras in my life, my health conditions and physical needs are now viewed in various ways as “elective.” This became clear to me again yesterday as I sat through my (predictably underwhelming) pre-operative consult with the fertility clinic. After reviewing my medical history, current medications, past experiences with anesthesia, and all the other bells and whistles, the NP began her pre-scripted laparoscopy/hysteroscopy speech. I learned of all the many ways I could die, be rendered permanently sterile, or be reliant on a colostomy bag for the rest of my life as a result of the surgery I’ll have again on August 20. I was asked to give my consent to undergo removal of my tubes should the surgeon deem it necessary, and was advised that a hysterectomy would be performed should that option be medically necessary to save my life. Yet, none of that discussion was unanticipated. Yes, it made my heart race, but I sucked it up and, with a fair amount of been-here-done-this-before positive thinking I nodded in agreement. Until the following was uttered: “And, you understand that this procedure is entirely elective. This procedure is not necessary for any reason other than potentially improving fertility.” No, that one startled me.
Don’t get me wrong, I completely understand that I will not die tomorrow if I do not have this lap. Endometriosis has not caused my heart to be one beat removed from its last, and in the world of “will I die in an hour if you don’t operate?” my procedure is about as elective as they come. But, I do take offense at the sentiment that this procedure is only being performed in the hopes of improving my fertility. Honestly, my hopes of that ever happening sailed off into the sunset a looong time to go. Like, after the first lap that didn’t result in immediate fecundity. The knowledge that we are moving to the very expensive and very not covered by insurance land of IVF following this thankfully-is-covered-by-insurance laparoscopy definitely impacted our decision to move forward now, but by no means am I only doing this lap to improve the likelihood of a positive IVF outcome. I’m doing it for a whole host of other “trivial” reasons, such as the following:
- To be able to have a bowel movement more than once every few weeks;
- To minimize or even eliminate the extreme leg, back, and pelvic pain I feel EVERY SINGLE DAY;
- To make it possible for me to actually work and function for the first three days of my menstrual cycle, rather than be tied to a bathroom variously vomiting, thinking about vomiting, changing my super/overnight pad/tampon every half hour, or washing another pair of underwear, jeans, and sheets that bore the brunt of my latest pad/tampon mishap;
- To decrease the fistfuls of Advil I have for breakfast, lunch, and dinner when my period arrives;
- To shorten my 10 day periods to a lovely 5 or 6;
- To enable me to have sex with my husband without being immediately engulfed in tears from the searing pain of penetration; and,
- To, you know, remove the fucking abnormal growths that are slowly destroying my body and my quality of life.
So, no kindly nurse, I do NOT understand that this procedure is only being done to improve fertility. In my mind, it’s being done to make my life worth living. Thanks for advocating for the health and happiness of your patients, by the way. It’s not like those of us with endo are facing a very difficult climb to get respect from insurers, employers, and society at large.
At least this time around I know up front that my surgery will be covered by my insurance. Last time I was living in a state with no statewide insurance mandate for the coverage of infertility diagnosis and treatment, so, as I mentally and physically prepared for the impact the surgery would have on me, I also had to financially prepare for the impact it might have on my pocketbook. In a state without insurance mandates, my “elective” exploratory laparoscopy in 2012 was, as the insurance call center rep informed me, “on equal medical footing with a breast augmentation.” And, she continued, “We don’t cover breast augmentations!” It was an odd experience to wake up ecstatic to hear that abnormal cells were growing on my ovaries, tubes, and pelvic wall, and had fused my bowel to my abdomen. I was thrilled to be ill because it meant the surgery would be paid for by my insurance, not by depleting our savings. So, things could surely be worse with this second at-bat at this having a hole cut in my stomach thing.
I thought electives were, you know, supposed to be elective? Something you chose, something optional, something to be assessed, debated, and voted on. How, then, is my infertility elective? At what point did I chose to be infertile? When did I decide to allow endometrial tissue flourish outside of my uterus? And, if this is something I “turned on,” how the fuck do I turn it off?