Well, That Wasn't the Plan

How my same day hysterectomy surgery went terribly wrong.

Years ago I found a greeting card that said on the outside, “when life hands you lemons…” and on the inside, “put them in your bra. Couldn’t hurt, might help.”

This month life handed us a few lemons. They didn’t fit in my bra but I’m working on finding a way to make them funny.

Photo by Ella C on Unsplash

I don’t quite know how to summarize the last few weeks but felt like maybe I should. Largely because this is mostly read by people who know me in real life and it’s easier to tell the story here and have simpler conversations when I finally return to my life. So many people have said, “I can’t wait to see what you write about this.” Hopefully a future installment will be more reflective after I have processed everything. Instead today is more of a story of what happened when life handed us some unexpected lemons. Hopefully a little more thoughtful than “good story bro” but with a bit of that intent today.

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I had a hysterectomy at the beginning of the month. It was supposed to be a 2 hour same day laparoscopic surgery. I talked to my doctor and everyone I knew who had one before and universally was told that this major surgery was not a big deal and I would be feeling like myself in a couple days. A few weeks ago I wrote about being present for major medical issues even when it seems like it isn’t a big deal. Who knew how much I would be practicing and encouraging my husband and friends to practice that idea so soon afterward.

I also pondered the question: “When you go home from heart surgery in a day or two is any surgery major surgery anymore?”¹

Turns out the answer is yes, because even if major surgery has become routine, it still has the potential to become old fashioned, scary, things went wrong, major surgery with complications and long, hard, painful recoveries. Followed by more complications and more time in the hospital. That is my story.

I wrote a few weeks ago about the doctor appointment I had which started this whole crazy and my feelings about how women’s health is handled.² I had many more thoughts after that initial doctor appointment. I did not feel like my doctor was accurately assessing what was going on in my body but she did find a previously unknown fibroid that I used as an excuse to ask for a hysterectomy. Initially she said since it wasn’t affecting anything she would just leave it but knowing it was there I became acutely aware of how much of my pain was centered in that exact spot. It actually was affecting things I just never named it before. And since I am 54, in menopause, have a history of endometriosis, have a fibroid and am having post menopausal bleeding, there was plenty to justify giving me one. She agreed.

At the pre-op I referred to the fibroid as large but she quietly said it wasn’t really that big. Whatever. It was to me. I let it pass. They also noticed during the ultrasound that I had some adhesions related to my endometriosis sticking my uterus to the wall of my body in a spot. She wanted a urologist to come and stent my urethra before she started the procedure so that if it was accidentally nicked in the process it would be easier to identify and repair. I said that sounded good as my goal was to feel better not create a new problem inside my body. She said that there was a small chance that if she found too much adhesion she might have to open me because she can’t see the back of the uterus laparoscopically. But we didn’t really spend any time talking about what that would mean or how it would affect my recovery and I didn’t ask.

I actually told my husband prior to the surgery that I suspected they were going to find a lot more scar tissue and endometrial adhesions than my doctor was anticipating and that I thought she would have to fully open me up rather than do it laparoscopically. I did not think she was accurately assessing my condition. I was right. I wish I had been wrong.

One of the first things she did in the surgery was to put a probe through my cervix and into my uterus so she could manipulate it during the procedure. Problem is, there was in fact more scar tissue and adhesions that she or any of the additional surgeons who were later brought in had ever seen. So when she moved the probe to move the uterus it did not move at all and she instead stuck the probe through the wall of my uterus and into my colon. However, she didn’t discover she had done that right away because she could not see the back of my uterus laparoscopically. It wasn’t until after she opened me up to get at all the adhesions and scar tissue, started cutting my uterus away from my body and getting to the back that she realized what she had done.

From what I can tell, chaos ensued. Initially Gen Surg was called in but they determined that a Colo-Rectal surgeon needed to come in to assess the damage. She came to talk to John while they were waiting for that surgeon to arrive. John had already been waiting longer than he anticipated and was feeling anxious. His wait would be much longer.

The night before my surgery I started thinking about John sitting alone for 2 hours and shot a text message to one of our mutual friends that I thought might be able to come sit with him for an hour or so on a Wednesday morning. He was happy to do so and gave John a nice distraction for those first couple hours. Another friend, and our pastor’s wife, called shortly after John got the news to see how things were going. When John started crying they were in the car to come sit with him and pray with him during the long wait.

I have needed a lot of care the last few weeks but my constant care giver and companion has too. And I have been so thankful to our community that has given it to him.

But back to the story…

So Colo Rectal arrives and assesses the situation. The puncture was very close to the rectum so assessing the location and if we were talking colon or rectum was the first step. Luckily not rectum, can’t say for sure but I think rectum would have given me a colostomy bag, when my doctor talked to John initially she told him she thought that was going to happen. Not sure how I would have processed that when I woke up. Luckily, after filling me up with water to push on the colon and find the air bubble, like my colon was a leaking bike tire, they determined it was in the sigmoid (if that means anything to anyone), removed about 2 inches of colon then stapled it back together with titanium staples which apparently now just live in my body forever.

Oh, and that not-that-big fibroid that started this all? Turns out it was bigger than my uterus. She thinks the ultra sound tech measured the fibroid as my uterus and the uterus as my fibroid. Twice. I had 2 ultra sounds within 6 weeks of each other. So keep that in mind when you’re tempted to rely on ultra sound results like they are the gospel truth. Medicine’s come a long way baby but we aren’t quite there yet.

About 11 hours after I waved good bye to my husband for a 2 hour surgery that ended up taking over 6 hours, we were reunited in my hospital room. Not that I was awake yet. At this point my daughter had gotten off work and arrived as well. What I vaguely recall and they confirm is that my first words when I came to were, “something went wrong”. There was just no way I was in that much pain, hooked to that many machines and feeling that frozen in my bed to have had the “easy” surgery I came in for.

I understood everything they told me after that but I think when your body is going through that much trauma it is hard to process it. I just laid there healing, moved when I was told to move, pushed the drug button every time they reminded me I had one, which was more frequent once they realized I was not in my right mind to be making that assessment myself, and just tried to survive. I had no deep thoughts or feelings. Just lay there and wait to heal.

It’s amazing how fast the body heals. That is what I felt those first few days when I went from not feeling like I could move to getting out of bed somewhat by myself. I went home 4 days later not feeling healed but ready to lay in my own bed and desperate to take a shower.

Those first 6 days home were not fun. They were painful and slow and overwhelming. Yet, every day I felt a little bit better, it hurt a little bit less to get out of bed, to sit up, to walk. And although I still felt terrible, I held on to the idea that I was recovering and this was going to be easy around the corner.

Side Quest: On day 3 of me in the hospital our daughter, who had started her summer job that week working for the Animal Humane Society, came to the hospital a little early. She had gotten bit by a cat toward the end of the day and they sent her home with info to get it checked out on worker’s comp. So while I was resting she and John went downstairs to the ER where they put her on an antibiotic and sent her back up to see me. ³ The next day I triumphantly came home from the hospital where I was set on the couch. Almost immediately Riss asks John to look at the bite. John doesn’t say much about it but turns around and mouths a 4 letter word to me. Riss was on her way to see friends and we did not stop her but John did tell her it looked concerning and she might need to go back in. By the time she got home it was clear she did need to go in. John put me to bed and brought her back to the ER where she was admitted for 2 nights of IV antibiotics. I am not sure John slept for 3 days going between taking care of me and sitting in the hospital with her. I would have told him to stay with her but I could barely stand up by myself, anything outside of walking to the bathroom and back required help. I could not take care of myself. So he exhausted himself caring for both of us. She came home on Monday night, and was back at work Tuesday morning. A lot of drama but an easy recovery.

Back to my story:

Day 9 after surgery, a few days after John caught up on some sleep, I woke up at 3:30 in the morning with pain in my mid back, I woke John up at about 3:40 as the pain started radiating around my ribs and chest, I was in the car on the way to the hospital before 4am. On the way to the hospital I remember thinking I hoped I would pass out and when I woke up they would have figured it out and I wouldn’t remember or be in pain anymore. I think the reason I didn’t is because God knew my husband literally would not have been able to survive that level of fear. He was already pretty sure he knew what was going on and he was scared enough.

Oh and it was his birthday. Happy birthday, your wife is about to die. At least that is how it felt. To both of us.

It was a blood clot. John was afraid it was in my lungs, which apparently would have been much worse. Instead it had come out of my colon and run into my liver. Don’t know what the lung kind feels like but the colon/liver version is horrible. Not a lot of quality breathing happens when you are in that much pain.

3 more nights in the hospital.

Desperate to get these out of my arms. They unhooked me the night before but made me wait til right before discharge to remove them.

Those 3 nights I turned a corner and was very ready to be set free on Monday morning thinking I was doing great. But about an hour after I got home I told John it turns out, “I am really healthy for a hospital patient but still pretty sick for an at home patient.” I am not in nearly as much pain and can much more easily navigate around the house, get out of bed, on and off the couch and walk the 1/4 mile circle of our neighborhood⁴ but for the most part I still only have the energy to lay on the couch.

My body is still exhausted, my energy is low and things I would have thought either took no energy or gave me energy are currently exhausting. Getting dressed to leave the house is so exhausting I need to rest before I can leave. This part of the recovery I expected, easy exhaustion. But double major surgery logically is causing me to get tired double as fast. Plus I lost a bit of blood during the surgery and the Internist during my second hospital stay kept reminding us that blood does not replenish quickly. So I am tired. I am told I should feel amazing with all that out once I recover but currently amazing feels very far away.

Let’s just call this proof of life. Freshly showered a couple hours after my second hospital stay.

This has been a lot and we continue to emotionally process. To wake up to not just complications from a surgery we planned but to process and heal from a second surgery that wasn’t even on our radar. There have been lots of feelings and emotions that I don’t yet have the right words around but I hope someday I will.

Second Side Quest: This afternoon as the three of us were relaxing together John went in to start lunch and almost immediately cut himself. Riss jumped up to get him some gauze and tape⁵ but as they assessed and wrap it up determined it needed stitches. John wanted to go alone but after everything he has done for us I insisted we do not go to the ER alone in this family and Riss happily went to take care of dad. We can laugh since it was so minor but officially all of us have been in the emergency room in the last 3 weeks and I think that is enough. We are done. No more. The end.

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Should someone come across this as they think about or prepare for their own hysterectomy I thought I would add a couple take aways. Not maybe particularly specific but hopefully somewhat helpful.

• Trust your gut. I knew my doctor was wrong and I knew she would find what she did. But rather than fight her about the size of my fibroid, the stupid reason she came up with for why I was bleeding, or the number of adhesions I had from my endometriosis I decided to say nothing, ask no questions. And so neither one of us were prepared for what happened. Is it her job to know more? Yes, I think she had the information to have come to better conclusions, but I hold my whole story not just the charted details and that means I have a responsibility to push her to consider the whole picture better.

• Every story is it’s own story. True of most major surgeries. There are some commonalities you can hold on to, some broad truths, but all our bodies are different, respond different, heal different, want different things. This is just my story. And even if someone else had my same version of events their body would react different and they would experience them different and react to them different. Live your own story.

• Lean on your friends. It’s not over yet but I can’t imagine how I would have gotten this far without friends to take care of my husband, to bring us meals, to just talk me down when I was struggling, to listen, to answer questions and be mad with me. I’m not always great at reaching out for help. It’s a skill I am learning as I age, and it has been a gift I didn’t know I needed.

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3. Little known fact, cat bites, even from healthy cats, are extremely dangerous and about 50% of of the time a cat bite patient will end up admitted to the hospital.

4. It’s actually a little less than a 1/4 mile and I’m doing it in about 10 minutes. I get nowhere fast but try to do it a few times a day.

5. Because why would you have Band-Aids when you can instead outfit your first aid kit with discarded emergency room supplies.