“Good morning, Mrs. Bush. You are endometriosis free.”
I don’t normally appreciate any greeting, in person or electronic, before 8:00am. Particularly any that refer to me as formally as “Mrs. Bush”. I also don’t normally hug and cry in front of grown men I’ve known for less than 36 hours. Friday, April 17th was a weird day.
It’s been ten years since I was last in Atlanta. Ten years ago, I was doing one of my first and biggest “grown up” things by hopping on a plane with my best friends and spending the next 3 weeks visiting friends in Germany. While at the airport in Atlanta, I got super nervous, started pouring sweat, and then emptied my stomach into three (yes. Three) “turbulence discomfort” bags, all before taking off. I’ve done a lot of growing up since then, but my somatic anxiety tells haven’t changed one bit.
Last Wednesday, after meeting my parents at Big Bad Breakfast in Birmingham (excellent recommendation, Brittany!) for my last real-food meal (for a whole week), we hopped in Favre (my sweet new Southern Miss gold Jeep) and headed to Atlanta for my pre op appointment with the Center for Endometriosis Care.
I was given the opportunity to enroll in two separate studies regarding endometriosis, with one aiming to genetically link endometriosis and infertility. All of the “awareness” noise we make is meaningless without action behind it. I’m very excited to be a part of the action.
After a conference with my wonderful doctor (he likes to meet you formally before he meets you on his exam table), I had a rather painful exam. Doc diagnosed me with pelvic floor dysfunction. I’m still learning what that is and what that means, but here’s the short (and Internet appropriate) version: my pelvic muscles have been spasming like crazy for a long, long time. When a part of your body feels pain, it contracts. This part of my body has been feeling a lot of pain, for a long time. It keeps contracting, over and over. Now, it has a hard time knowing when that’s appropriate. This is one of the main causes of my daily pain with things that shouldn’t be painful. Next month, I will start a very specific form of physical therapy to help reprogram my muscles. More on that at another time.
I was sent to our hotel with a lovely gift bag. Inside was a humongous bottle of Miralax, some Dulcolax, lots of Gatorade, and a Fleet Enima. This goes to show that with proper southern hospitality and etiquette, a colon cleanse can look like a spa gift basket. Sounds like a party, right? It wasn’t that bad. Not something I’d actively choose to do on a Wednesday night, but I know it could have been a lot worse.
As mentioned above, my anxiety lives in my tummy. Occasionally, it pops up to make itself known to everyone else. My anxiety heaves made their appearance once I was in the pre op area, putting on the awful gown and getting my IV Thursday morning. More props to my nurse for being Johnny on the spot with the bag and ear sticker. Considering I had just emptied the contents of my entire digestive system a few hours earlier, there wasn’t much to put in said bag. They started giving me ALL of the anti-nausea and anti anxiety drugs, which was super. Shortly after, my doc came in, cracked a few jokes, and then did the most wonderful thing. He took my hand and put a hand on Mister’s shoulder, and he prayed over us before surgery. After a kiss from mama and daddy, they gave me the real good stuff, and I woke up a few hours later with searing pain in my right side. This was odd to me, even very drugged, as 99% of my pain has always been on the left.
I have very vague memories of the remainder of Thursday. I know I had a pain medicine pump with a button. I know that button didn’t work for the first few hours, and Nurse Melinda was very impressed with my pain tolerance. I know I made mama text Student Doctor Bestie and ask her why I could taste everything they put in my IV. I know I hated those leg compression things, almost as much as I hated the hospital gown. That thing went as soon as I had the faculties to sit mostly upright with some assistance, and on went my leopard print gown with matching robe. Leopard is a neutral and is flattering on everyone.
I was informed later Thursday and again on Friday morning what all happened on the operating table. I had a cystoscopy and a hysteroscopy (a look around inside my bladder and uterus, respectively), and those areas were clear and free of endometriosis, fibroids, or polyps. I had three small incisions: belly button and one near each hip, where my doc excisised all the endometriosis he found. I had a presacral neurectomy, and a surprise appendectomy. Turns out, my appendix had endo on it, and was “glued down” to my intestines. Doc didn’t like how it looked, he was in the neighborhood, so PEW PEW! There it went. I’m sure God gave us those things for a reason, but I can’t say I miss mine. This explains the pain on my right side when I woke up.
The presacral neurectomy has been the biggest adjustment for me, so far, and was my biggest obstacle in the hospital. Nerves are important, and the ones down there are in charge of a lot of stuff. It took me a solid 24 hours before I regained the noggin to muscle control that one needs to go to the bathroom. It took some serious focus and a catheter at 3:00 am before my body figured out how to empty my bladder all by itself. I got a high five from Nurse Melinda once I did figure it out, though. Friday morning, my doc came in and gave me the only news worth waking up at 7:15 with a catheter taped to your leg to hear. I am endo free. He got it all. The chance of recurrence (regrowth) is less than 5%. My endometriosis is in remission. The good news didn’t stop there. Doc had originally told us that we could start IVF a month after surgery, so we scheduled our first cycle to start in June. However, he has encouraged us to wait 3-4 months. Not because of healing time or because I wouldn’t be able to handle the treatments, but because he thinks he has fixed our problems. He has encouraged us to give the good old fashion way of conceiving a few months, because he believes it to be possible now. He hugged me again, blessed us both, I cried, and then Mister took me home to nap where nurses wouldn’t bug me or poke me. Saturday we went to Steak and Shake where I had a cookie dough milk shake, and on Sunday, Favre brought us home.
I went back to work yesterday. I’ve gotten a lot of surprise about returning so soon, but I promise, doc said I could sit at my desk and do stuff. It helps that I love my job. It helps that my property is small, and I can plan my day around specific needs (like being still). It also helps that I have a rock solid work family. I work in a relatively new company that makes a point of rallying around each other and supporting their managers and properties in any capacity. I knew this on the professional level already, but they have gone above and beyond anything I expected with this surgery and potential IVF. I have personally heard from my direct supervisor, my counter parts at other properties, the president of my company, and a few of the owners, multiple times over the last week. Each time they have made it a point to be encouraging, supportive, and to make this time as easy as possible. They didn’t judge me when all the feelings came out and I cried after a simple “safe travels”, either.
I am still sore and moving a little slow. I probably will be for another week or so. I come home from work and immediately sit down, with the intentions of doing nothing for the rest of the day. So far, that’s working out great. We have wonderful friends bringing us meals while I continue to heal and figure out what “normal” is. I have hurt every day for so long, I have no idea what endo-free life is going to look like in practice, but I’m pretty excited to find out.
While this month has been immensely stressful, it has been full of encouragement and hope. There are a few uncertains still, and I have a feeling that pelvic floor therapy is going to be another adventure. We are healing. We are encouraged. We are hopeful. We are well fed. And we are His. To God be the glory, great things He has done.