Thoughts on Life and Endo from a Freshly Diagnosed Chick
By: Nicole Middleton
Have you ever met a Gyne that you loved? I haven’t. I know I haven’t been in the game long; I was diagnosed only four months ago. I also know that meeting the perfect medical advocate is a pipe dream but a girl can dream right? I moved to a new city last month and I just met my new Gyne. It came at the right time, I was unhappy about my old one in Chicago, and I desperately wanted a second opinion. Dealing with daily endo pain is so fun when moving, can I get an Amen, ladies? Nevertheless, I am now settled in my new home in the St. Louis area but my first trip to this new doctor was unsettling.
It seems I’m always sitting in waiting rooms. I found myself in this position yet again, and like a novice, forgot to bring my book. I had nothing to distract me from the potentially crippling anxiety that I felt creeping up within me. This new waiting room then became like a lower level of hell for me. I was armed with my The Endo Patient Survival Guide (I highly recommend it) but I felt as if I were on endo info overload. I was worried that no doctor had enough time to address all of my questions. I had to do something that put my brain into zombie mode for a bit to ward off the panic. I tried observing the other patients in the waiting room but that ended in silent judgment and I try to avoid that. I did pick up that one upside of being pregnant is that your big belly can be a phone/hand rest for you while you’re texting or scrolling the web. Except wouldn’t the signal against the belly be bad for the baby? I went down that rabbit hole pretty quickly but I’ll touch a bit more on babies later. Then I tried flipping through the trashy gossip mags, got a bit of a guilty pleasure rush, and then got pissed at the stupidity of the section where they show various pictures of how ‘the stars are just like us’ because, SHOCKER, they, too, go grocery shopping. My heart rate spiked again as a nurse would call women back to the office that got there way later than me. Oh hell no, WTF?!
I finally got into the office and had to explain everything to a stranger. She gave me a pelvic exam where her hand brushed up against one of my endo growths. (!!!) At least she complimented me on my pain tolerance. She prescribed me an upped dosage of progesterone only birth control pills and hurriedly said, “Well we should schedule you back in a month, if you don’t hate me by then.” I didn’t think that was a funny joke. Was she expecting my body not to react well to this hormone treatment? I don’t appreciate anyone making light of the fact that I am in intense pain every day, or that because of that I am now a fucking guinea pig for endo ‘treatments’ that don’t even have close to enough research behind them. I digress.
On another note, my boyfriend used to scold me for how much I sleep. That was infuriating to me because it wasn’t simply laziness. I think he gets it now but there’s always more to learn, isn’t there? Another bump in the road recently was when he told me he has felt sexually unwanted. He said he has felt that way for two months. It takes him a bit to process emotions I suppose. He vaguely mentioned how hard it probably is with endo. I was instantly livid that having endo was not a legit enough reasoning for him and simultaneously also felt terrible that he wasn’t being satisfied. How non-feminist of me. Then my chaotic brain couldn’t stop thinking how men always get to cum and women get to cum at a far lower rate. What about me?? I want to cum!! My libido is down and I’m exhausted most of the time. Unfortunately for a time, we weren’t having sex because it was a 50/50 chance that I would be in crippling pain directly after. Weighing those odds with a major anxiety disorder is f-u-n. But, the day after he brought up the ‘feelings of being sexually unwanted’ I blew him in a Whole Foods parking lot. I felt I had something to prove. Looking back, I am upset with my uterus (most of the time) and I’m upset with my weird subconscious guilt. It is an ongoing adjustment for my loved ones to support me with endo. It can be incredibly frustrating. I struggle with loving to my best ability when I’m experiencing chronic pain too.
I had my first Lap performed in March and have almost paid off all the hidden fees and bills now. I just love how when I discussed the procedure with my insurance company and surgeon, the estimated amount due out of pocket was quoted at hundreds of dollars lower than what I actually ended up having to pay. I was living paycheck to paycheck at the time as a nanny/waitress/theater artist. Wah-fucking-hoo! Lap four months ago and I’m currently and have been in more pain now than I was pre-op. I take way too many painkillers that don’t really work and I smoke a lot of weed. In super challenging times, I have to remind myself to do light yoga, make lists of what I’m grateful for, and maybe spend a little time in my anxiety workbook. I grow angry at the people telling me to just get pregnant, but to be honest, I really do feel the pressure of having a baby sooner rather than later. I’m trying to lean into my faith and my relationship with Jesus- because I know his will for me (for us all) is not defined by mental and physical pain. I know he is handling the situation, I’m choosing to trust that he’s leading me. With his help, I hope to continue to stretch my body and mind; I want to resist stagnancy, even when with an illness sometimes all I feel is stagnant. I am where I’m supposed to be. I’m also incredibly thankful to have this community of female warriors to learn from.
Keep on keeping on!
I love and honor you all!