Let me start by saying that in no way did I think there would be a part two to my original blog post about my hysterectomy. I’m putting this second piece out there as a personal wish that a physician or another person who also experienced this scenario can connect with me to discuss it. So far I’m coming up empty on my Google searches. After my follow up with my surgeon, I was left dumbfounded.
Roughly two weeks after my laparoscopic hysterectomy, I went to my follow up appointment. A PA came into the room in a strikingly good mood. I remember being surprised because her disposition was like that of someone who had one too many cups of coffee, not only was she flitting around the room energetically, she was very happy, which immediately put me at ease. She sat down and asked me some follow up questions: Did I have any pain? Not really.Was I still taking my heavy pain meds? No. Was there any bleeding? No. Anything going on I felt worth mentioning? Yes, headaches, hot flashes, and fatigue. With every answer there was a resounding “GREAT!” or “That’s normal!” to each of my responses. We’d go over those three symptoms shortly with the doctor. She pulled up my chart and told me that my uterus looked good, and there was no cancer to be concerned about which was excellent news. I stopped her there and asked her what did she mean about my uterus looking good?
“My uterus looked good you mean because there’s no cancer right? But you saw it had the adenomyosis on it, right? Was there anything else going on with it? “
“You didn’t have adenomyosis. Your uterus was perfect.” I suddenly realized it was nervous energy she was emitting.
Um. What?
With that, she said, it’s time for the surgeon to come in and chat with you, she’ll be right in.
My mind was spinning. I felt a jolt of hot anger and then panic as I realized that maybe none of my symptoms would go away following my surgery. The surgeon came in and sat down. She handed me a piece of paper and said it was my report. She said she had great news, that my uterus was healthy, no adenomyosis, no cancer, no endometriosis or anything of that nature. My cervix was enflamed, but that was really it.
“Wait. How can it be that three different tests: ultrasound, CT scan, and MRI were all wrong? Each one said something was wrong with the uterus, and the MRI confirmed adenomyosis, so how can my uterus be healthy?”
“Sometimes these things are a mystery. But either way, you won’t have to worry about having pain, severe fatigue, passing clots, all the bad things surrounding your menstrual cycles anymore, so this surgery was still a very good thing.”
She mentioned it was best I stay on the birth control pill because it actually reduces ovarian cancer by 50% in women my age. I reminded them that these awful headaches started when I went on the pill four months ago, and I would be going off of it as soon as it was possible, but thanked them for letting me know. They asked me to wait to go off the hormones since my body has just had major surgery. We agreed I’d take one more pack before quitting. I took my report, thanked them, and left.
Once I was sitting in the privacy of my car in the parking lot, I called my husband and cried like a baby. The idea of having just had this surgery only to find out all the tests were wrong, my symptoms must be coming from elsewhere, and that I still may have to deal with many of my symptoms was crushing.
I read the report over and over. I did see something that the doctors did not mention, and immediately thought it must not have been important enough to bring up. It was a paraovarian cyst on/in the fallopain tube. This can cause pain but cannot be detected when in the body. These are only found when they look at the organs after they are removed. It was tiny so who knows if this was causing any issues, and again, the doctors did not mention this to me. Honestly, I was just trying to find an answer of some kind to any of this, since it was feeling a lot like I just did all this for nothing.
The biggest shock to me through all of this-is the fact that not one, not two, but three different tests with three different doctors all said my uterus had a problem. How can this be that my uterus was in essence “perfectly fine”? If you are a physician reading this, please write me and tell me about your experiences, if any, with this. If you are a person- woman or man- who has experienced multiple tests being wrong, please write me about your experience. I have never heard of something like this.
Of course my friends have asked me if I would hurl a lawsuit at the doctor. The answer is no, absolutely not. Three doctors all from separate practices interpreted the results so it’s not like one of them lied to get the money for the surgery. The doctor that said it was adenomyosis on the MRI isn’t affiliated with the surgeon at Yale that did the surgery, and that surgeon was actually my second opinion doctor. It just makes this whole experience shocking and disappointing. In my previous article on the surgery, I implored you all to be advocates for yourselves, to get the right tests, to be thorough about your health, but what if the tests are wrong? That thought had never crossed my mind.
Also, two letters came in the mail about a week ago from my insurance company. It turns out my expedited departure from the hospital was in fact not by my doctor or nurse’s urging, it was the insurance company’s decision. They had declined an overnight stay and only gave permission for a 30 minute observation after surgery. This was also eye-opening to me. Why in the world is my insurance company approving whether or not I am allowed to stay in the hospital? And why would insurance not cover that stay? Our healthcare in this country has such a long way to go. No shocker there.
Lastly, while my recovery is going quite well 3 weeks later, I began experiencing that ever familiar fatigue again that I had prior to surgery this week. As a reminder, I’m on iron supplements, B12, and magnesium to try to get the anemia in check. So, while the recovery piece is a definite positive, the reappearance of this symptom I’ve so wanted to kick to the curb has been a bit of a downer. The real interesting part is going to be when I go off the hormones at the end of this month. Will everything come back just the way it was or will my energy and symptoms improve? Not sure, but all I can do is hope to God it’s better! I am seriously not sure what other steps there even are. My next scheduled blood work is in December with the naturopath. While there is so much in my life to be grateful for, it’s frustrating when you are a health mystery with no answers.
Quick update to this post- it has been 5 months since my surgery and my health has drastically improved. The fatigue vanished after that last time I wrote about it above. No more pain, no more heavy eyes, brain fog, etc. My anemia has greatly diminished. And amazingly, I have not had one interstitial cystitis flare since back in September. It turns out my hysterectomy was one of the best decisions in my life.
Amber Colored Glasses 