On medical and non-medical trauma
For the past ten months, I've suspected that I have endometriosis. A little over a week ago I had one of the most caring people I've ever met scrape my insides for a few hours to check that out for me.
I had an appointment to meet and vet this surgeon over the summer.
Even though I haven't suffered for as long as many people out there with chronic pelvic pain, I was at my wit's end: a surgeon who performed my first laparoscopic surgery years ago to sterilize me told me earlier this year that there's no way I have endometriosis, I was making no progress in pelvic floor therapy despite doing the homework and more, and I was on a birth control pill that admittedly helped alleviate a decent fraction of my pain but just not enough, on top of draining the life from me. No remedy was working as well as I wanted it to.
At this point, I needed someone to listen to me.
I wrote what seemed like a short novella to prepare for this because I was running out of options. She didn't seem annoyed, let me share as much as I wanted with her and her assistant.
I was embarrassed before I even started. It felt like a middle school presentation that I somehow couldn't pass no matter how hard I prepared because I no longer knew my body despite inhabiting it and striving every day to take such good care of it.
I kicked off with how I often had to stay home from school in high school because my periods just sucked. My voice trembled as I chronicled my iron-deficiency anemia that I have self-treated on and off since the middle of grad school because no one believed me, brushing off my symptoms as just stress from my PhD program even though my ferritin was 20.
I had to hold back hot tears as I reached the point in the timeline when control over my life was slipping from my grasp. Suddenly taking 200 mg of iron nearly every day was not enough: my ferritin had tanked thirty points in less than three months. Unexplained and eventually relentless pelvic pain and GI issues kept me from going outside for a walk let alone going to work for weeks each month.
She listened to me and didn't rule out endometriosis. While she admitted I was doing all the right things to manage my symptoms, I was approaching the three-month mark and still unhappy. Unfortunately, many endometriosis surgeons run their practices like a business and don't accept insurance, preying on vulnerable patients who will do anything to end their pain. But like any good doctor, this one gave me the option and time to think about it.
Even though I hadn't made an explicit decision when I walked out of that room, I felt better. I won't forget how she said goodbye to me outside and rubbed my shoulder so comfortingly.
After my subsequent MRI in August actually detected something suspicious and the surgeon said she found it perfectly reasonable to operate in this scenario, I didn't have too many doubts about having consented until I had a mostly symptom-free September since coming off the pill I was taking. Maybe I didn't really need this.
I wasn't nervous until I was all hooked up in the hospital bed last Thursday and this near stranger whose aim was to get rid of my pain came to talk to me and consent to potentially losing my appendix given my persistent right-sided pain. I loved talking to her because I felt so dismissed for so long. I asked her a question, and she said I taught her something new. She said everything was going to go great. This time I had to believe her and not vice-versa.
This was very unlike my first, very simple lap to remove my fallopian tubes.
The first question I asked when I woke up was whether my appendix was gone. "No" was the surprising answer to that question.
Then I asked how long it took.
A few hours, longer than expected.
I was in a lot of pain. This time I welcomed being wheeled out to my ride rather than nobly refusing help. I didn't want to talk to my friend. I didn't want to talk to anyone. I wanted to log into MyChart and read the clinical notes while I was still only half-conscious from narcotics and anesthesia because I needed to know if I was crazy or not, if I made up all the pelvic pain and I wasted this surgeon's time.
Spoiler alert: I didn't waste her time.
I alarmed my friend with every misstep I took through Target to pick up last-minute essentials, barely finding my way back to the car without toppling over in the parking lot before I was dropped off at home to sit with the news I had kept to myself.
The day after my previous lap, I walked 20k steps because I was bored and felt fine. This time, I could barely walk the next day. I could feel tears if I even thought about shifting positions in bed.
I could be comforted only by my surgeon who called to check in on me and ask if I looked at the clinical notes. Hoping she couldn't sense that not even a thousand dollars could have convinced me to not review the description of her findings immediately after waking from anesthesia, I said yes.
It was still something else for me to hear her describe my case verbally and in more detail: even though it was "only" stage II, it was very aggressive. I had interestingly shaped lesions that extended across not only both of my uterosacral ligaments, but also into my rectovaginal septum and my rectum. There was also a fibrotic nodule on the peritoneum of my bladder.
She said it made sense to be in so much pain given how much she removed and how long it took. She said it was a good idea that I got surgery now because I may have needed a bowel resection had I waited longer.
Yikes, I repeated. What else am I supposed to say to that diagnosis? I thanked her profusely and returned to my NSAIDs and narcotics.
I am so grateful she was my surgeon. I can't stop thinking about ways to express my gratitude at my follow-up appointment. I feel strange admitting that I'm attached to her. For some reason I found something so motherly in her even though I guess our age difference isn't even that big. I'm tormented by my motherlessness, and I think this is a big reason why I feel like a perpetual child and why the attention from this surgeon feels so good. The way she cared for me just hit the spot. Mothers are supposed to tell you things will be all right and maybe even make them all right, even when you're at your most vulnerable. And what's more vulnerable than letting someone excise endometriosis from the deepest crevices of your pelvis?
I don't think my provider nor I expected my case to be that extensive. I don't either of us expected me to have any complications after this either.
Long story short, I stopped being able to urinate the following day. I was alone and had no choice but to call 911. My bladder was getting fuller each second. Unfortunately, this continued as I waited over 45 minutes in the waiting room at the ER. No one paid me any attention until I started sobbing. My bladder was going to burst.
Humiliatingly, I was taken into an examination room for nurses to "check" how full my bladder was. As if I were weeping over 200 ml in my bladder.
The women's assessment center knew of my case because I called them earlier with some concerns. Apparently they called the ER and told them to transfer me there because they had a room for me there.
I was wheeled over there without first having the catheter inserted. It was agonizing.
I didn't know I could become that hysterical in my life. According to the clinical notes, I was screaming by the time I made it to my room. Maybe that was an understatement. It seemed like the nurses took their sweet time to insert the catheter. It took them an eternity to find my urethra for some reason. I thought I was going to die.
I finally calmed down after urine was extracted from my bladder. I shocked the nurses. There were nearly 1700 ml.
I ended up staying in the hospital for almost two days to ensure my bladder was okay and that I wasn't having a bowel obstruction either.
I was embarrassed and ashamed. I could have died and had to act like a two-year-old for anyone to give a damn. I was alone just like how I have always been, abandoned at times when it mattered most. Somehow even worse was knowing that I became That Patient. The one who ends up having some complication for no good reason and makes a scene out of it. The inconvenience.
Still, my surgeon's team, another surgeon in the department, and even my own surgeon visited me in the hospital despite tending to other surgical cases. They all assured me that I didn't do anything wrong; my pelvic floor likely spasmed and just caused lots of problems. They insisted I never go to the ER and call their number instead so that they can pick me up and I can be seen in a timelier fashion if a similar complication occurs. They made me feel a little less ashamed about myself. But not entirely.
I'm still in shock not only from the anesthesia and the trauma of that ER visit but also no longer living with a disease that has defined me and made me live in fear for the entire year. I used to pee every 20-30 minutes for as long as I can remember; now I can sleep through the night and go about my day without needing to empty my bladder all the time. The rock in my pelvis is gone. I feel lighter.
Yesterday I was sitting at home and just broke down. I hate that I am so pathetic, becoming extremely attached to this wonderful human being who simply did her job. I hate that such normal life things remind me that I've never had a mother and never will. I hate that my own work feels meaningless and that I myself didn't decide to become a surgeon and improve other people's lives. I hate that I let myself suffer for so long.
I hate that being cared for and treated can feel so good yet so bad at the same time.