So, after Dr. Hatty suggested surgery, I went to the hospital a few more times. First, I needed to schedule the surgery with Doctor Jane, which was for April 11th. Then I had to have a chest X-ray and an EKG. On the 11th, the doctor would do two surgeries. In the first, a laparoscopy, she would make a small incision through my belly button and have a look around for endometriosis. In the second, she would have a look around my uterus to see if there were any abnormalities.
The first surgery was covered by my insurance because it was related to endometriosis, not infertility. The second surgery is normally considered to be related to infertility, so she didn’t actually order that procedure. The second surgery was sort of a bonus; the old buy one, get one free deal. You know, the “While we’re in here, we might as well have look around the place” kind of thing.
It was a good thing too because the laparoscopy would suggest that I did not have endometriosis. However, when they checked my uterus, they found endometrial tissue growing in the muscles of my uterus, which was just as bad, if not worse.
But let’s not get ahead of ourselves.
After the surgery had been scheduled, Ben’s dad had a heart attack. We were told that he needed a triple bypass surgery (and he ultimately got a quadruple bypass, which I didn’t even know was possible). This added to the stress of the month of April. You see, when Ben’s dad had the heart attack, they quickly put stents in to get him out of danger. They then transferred him to a larger hospital to take care of the bypass.
However, there was a waiting list for the bypass, and we came to understand that we needed to give an appropriate red pocket (红包) if we wanted the surgery scheduled. This created a lot of grief as Ben’s dad could not go himself to hand over the red pocket; Ben was too disgusted by the practice to do it; and Ben’s mom was too shy to go alone. I offered to go, but it was hard to fit everything in with me going to the US for a conference on the day of the heart attack and then getting prepped for a surgery immediately after I returned. Ultimately, it was Ben’s uncle who found an opportunity to give the doctor the red pocket, and the surgery was eventually scheduled.
It was in this kind of situation that the day of my surgery arrived. (Ben’s dad’s surgery would be scheduled about a week later, and Ben would spend 2+ weeks sleeping in different hospitals). An excerpt from an email I wrote to my boss Don at the time says, “I’m falling apart a little bit… At this point, I’m tired and in pain, so I’m just going to go to bed and hope solutions will appear when I get up.”
I am not known for being very dramatic. If anything, people sometimes describe me as being kind of cold. So, when I write “I’m falling apart a little bit,” it literally translates as “PLEASE HELP ME! I JUST CAN’T ANYMORE!”
The day before the surgery, I had to check into the hospital and take all this awful medicine. It was, well, awful. I felt nauseated much of the night. I must say, the only thing I hate more than the feeling of nausea is the feeling of drowning. Fortunately, morning finally came, and they wheeled me back for surgery, except that my heartbeat was not quite right.
The anesthesiologist tried to find the results of my EKG in the system, but he couldn’t find it. I had never been given a hard copy of the results, so I couldn’t help him. He decided to do an EKG right then. He said, if my heart rate did not regulate itself, they would not be able to do the surgery. Even if it did start to sound normal again and they do the surgery, I would have to get this checked out later.
This was not what I wanted to hear, but I needed to relax instead of freaking out. Then, as we were waiting, the anesthesiologist mentioned that since this was a small surgery, they would not be giving me any drugs. Of course, this conversation was happening in Mandarin, and my immediate thought was that they were going to do the surgery with only local anesthesia or none at all. This served to freak me out even more. Could I stand to go through this procedure while conscious?
However, I reminded myself that I needed to remain calm. I needed this surgery. I needed to know what was going. I needed my heart to beat normally. It was so interesting, though, laying there and listening to my heart beating arrhythmically. A couple beats here, and then nothing for a while (very suspenseful, I tell you). Then a couple really fast beats. Then a slower one. Then nothing.
Fortunately, while we were still waiting for the doctors, my heartbeat started to sound normal again. At that point, they put me under. I would realize the next day that what they meant was that there would be no pain medicine after the surgery.
The day of, though, I was still pretty doped up from the anesthesia, so I was feeling okay. Ben and I called his dad and told him for the first time what was going on with me. I felt we needed to explain why I wasn’t around and helping out when he’d just had a heart attack. His dad started crying, which startled me. It was clear he felt overwhelmed. “Why,” he asked, “was everything happening to our family at one time?”
He decided not to tell Ben’s mom about this for the time being. He thought she might not be able to manage anymore stress. So, she didn’t learn about my surgery until after Ben’s dad got out of the hospital about three weeks later.
I sent Don a message after the surgery that helps capture my understanding of the situation that day.
Here’s what they found. It looks like I do have endometriosis, but I learned today that there are different kinds. Mine, at this point, isn’t growing outside the uterus that they saw (which is good), but is over growing within the uterus (which is not good). Today, they tried to get rid of as much excess as they could, but I need to have these injections for the next three months in order to reduce the endometriosis in general. Also, there are these polyps which they have removed and are sending to be biopsied. Please pray those are benign.
After those three months of medicine and prayfully a benign biopsy result, I can try to have children again. If I am successful, that’s actually the best treatment for endometriosis on the market right now. It doesn’t cure it, but it keeps it away for at least another 10 months. Breast feeding might also help keep it away longer.
Maybe by time I’m done having kids, they’ll have a better treatment for endometriosis besides surgery and hormone therapy. Anyway, there’s still a lot of maybes and we’ll sees, but I have some answers and an action plan, so I’m feeling emotionally great. Physically, well, we’ll just have to give that time.
I felt very proud of myself that day for being right, or what I thought was right. A kind of endometriosis. Google diagnoses aren’t always wrong.
Women know their bodies. When we say something is wrong, we would appreciate being listened to. However, all too often, our concerns are dismissed because we are considered “too sensitive,” “overly emotional,” or “worriers.” We are too often told to relax when something is in fact wrong.
It wasn’t until the next day when I got to translate all of these medical words into English, to really investigate what it was I had and what it meant that I started crying. At that point, the physical pain started kicking in too.
Maria Yeager, who has written several books about her experience with adenomyosis, calls it “the older, uglier sister of endometriosis.” I’m not a big fan of that description because of the assumption that being an older and less attractive woman makes you somehow worse than a younger prettier one. I prefer “the meaner cousin of endometriosis” which is gender neutral and being meaner is in fact worse.
However, political correctness aside, the next day I did feel like adenomyosis was a worse diagnosis than endometriosis, especially for a 28-year-old who wanted children.*
So, I cried, and cried, and meditated, and cried some more.
*It’s important to note that today I don’t think that adenomyosis is a worse diagnosis than endometriosis. They’re about equally awful depending on how it affects one’s quality of life.
**The featured image is of the flowers that Ben got me for our wedding anniversary at the end of April. My wedding anniversary gift was that he finally got to come home after spending more than a week in the hospital with his dad.
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