I wanted to jump in here to tell you guys a little about my experience with my laparoscopy surgery. It was an excision surgery as well as a colon resection surgery. My stage 4 endo was everywhere, and it took them a little over 7 hours of surgery to remove. I also had this major surgery during a pandemic and while it was scary, I am extremely thankful for the care given by the surgeons and hospital staff. I waited over two years to get this surgery and the thought of having it postponed terrified me more than the actual surgery.
When I arrived at the hospital on October 29, 2020, I went in with my husband and a small bag with a few belongings for my hospital stay. I was asked to be there 3 hours before my surgery which was at 10 AM. After waiting for less than an hour after checking in, I said goodbye to my husband because he was not allowed to come in and I was asked to come into the surgery admission prep room. I changed into a gown, removed everything, put on a medical cap, and changed my mask (I had to wear the mask all the time because of COVID-19). In Admissions we went over my medical history and the medicines I was taking (TIP: Take a small paper with all the vitamins, supplements, and medicine, that way it is easier, and you will not have to remember all the names). During this time, I was given some medicine for the surgery.
During the surgery admission stay I also got a chance to talk to doctors and nurses on my surgical team about the operation. My case was so severe that there was a team of doctors in training (around 10 of them) that were going to be present during the surgery. I could have freaked out of the simple thought that all these people were going to see me naked on an operating table but instead, I decided to flip the story in my head and just focus on how thankful I was to have all these future doctors learning from my case to apply to future endo sisters. I had two surgeons operating on me, my gynecologist, and a gastroenterologist. I was very lucky to have two experts on their respective fields, which gave me a peace of mind.
I was wheeled into the operating room doors and then asked to walk in and lay on a metal table. The room was huge, cold and with lights, screens, and robots everywhere. In one corner you could see 2 nurses and the anesthesiologist preparing everything and the doctors in the other corner by the entrance. I felt respected all the time and my gynecologist was constantly asking me how I felt and to tell him in my own words what I was going to get done. I believe this is a norm because you need to be 100% knowledgeable of what you are in for and why you are getting the surgery, by the time I was laying in bed I had repeated this 3 times. I was explained about everything they were doing to me during this time, by the anesthesiologist and nurses. Before going into a deep sleep, my doctor gathered everyone around the table, he introduced me again to everyone, mentioned my name, the extent of my case and explained why we were all there and what we were all planning to preserve (my fertility). This amazed me because he truly treated me like a person, and he made me feel part of the team!
“Count to 10” … 1,2,3
I was gone for a little over 7 hours and the first thing I did as soon as I came out of surgery was asked if I had a bag attached to my stomach. Back story, A week before my surgery I was told in my pre-surgery appointment that I could wake up with a colostomy and that I could have it for at least 4 months. This news stole many nights of sleep before my surgery, but I was still adamant to get the surgery. During the pre-surgery appointment the nurse drew a circle with a sharpie which she later game me to re-touch daily until my surgery. This was the size of the colostomy and where it was to be placed if I needed it. I was thankful to hear that I had no bag attached to me as it was going to be a slower recovery and psychologically harder to deal with than the scars themselves.
Overall, the surgery went great! I was placed for seven days in a recovery unit, mostly because of the colon resection part of the surgery. I shared a big room with other patients because the hospital was at its max capacity due to COVID-19. I did not mind, I felt grateful that they were even able to have me there. The first two days I had the happy button “morphine” and then I did not need it as much and they changed me to pain meds. I was in a lot of pain mostly from the trapped gas on my diaphragm, it felt like just breathing hurt extensively. I was asked to move early on as much as I could and to walk even if it hurt because it was the only way that the gas was going to come out and it was something that I needed to do all by myself without the help of any medicine. I needed to pass gas for them to make sure the surgery was a success, and it took seven days of walking it off and being in extreme pain. Honestly, I think that being filled with gas, was the hardest thing to go through from all of this.
Fun story: They lost my belongings after the surgery and when I was finally able to wake up somewhat at night, I had the nurses look everywhere because I knew that their shifts were going to change and if the people that were involved were not there, I was never going to have my things back. At the end, it all got resolved and it ended up being that my things were placed with another patient in another unit.
At the recovery unit they had beautiful stickers on the walls that encouraged patients to walk. On my third day I started to walk, and I noticed a caterpillar in front of the door pointing to the left and encouraging to walk. I walked up to a window 3 times that day and then I returned to the room. Halfway between the window and the door another caterpillar was giving encouraging to ” go on, you are almost there”! I thought it was so cute. On my fourth day I was walking with my husband and he encouraged me to walk pass the window and make a loop to go back to the room. As we were returning on this new route, we found this beautiful butterfly. The words say, “you did it”, and it explained that walking the loop 3 times a day prevented complications. I was so proud to have found the butterfly. That moment signified that I was better to walk the loop, and at the same time the metamorphosis that was happening in my life. Walking the loops meant I was getting better, stronger, and closer to go home with my loved ones. I took a picture every time I walked by it. On my first loop I had the tube of fluids with me which made it hard to walk, I had to walk bent but on my last one I was free, and on my own.
I am still recovering but I can start to see little glimpses of a person that I once was, and I am hoping that with time I can heal completely to start a new chapter of my life. I will still be coping with this illness but hopefully with less pain. I was surprised to find out that they found endo even in my diaphragm and that I was not presenting any symptoms.
There’s still so much to share about my experience, but I cannot do it all in one post. I hope I can continue to do so in the upcoming days. In the meantime, I want to give my endo warriors hope, I want to tell them that there are health professionals out there that understand endometriosis, that have great bed manners and that are willing to listen to you. Keep advocating for your health until you find the right doctor for you, one that you feel comfortable telling them all your symptoms without feeling judged or crazy. The possibility of having a better quality of life is real and my hope is that we can all find the right treatments for our body and our needs.
I hope my story can help you somehow and please feel free to reach out.