When I had endometriosis surgery in August, I decided I wanted to share the experience with my followers – not for sympathy (I was so relieved to be having another surgery and hopeful that this would help alleviate the debilitating pain) but to educate those who don’t know what endometriosis is, connect with girls who are suffering from the disease, and show real moments in my life that aren’t always as pretty as Instagram portrays. I was never one to talk about my pain publicly, so I was nervous to share at first, but received so many comments wishing me a quick recovery and messages from several girls who were going through the same experience and haven’t gotten the help they need from doctors. Endometriosis is diagnosed through surgery, so it is often overlooked and in my case (as well as many others), not taken seriously for many years. If you are suffering from endometriosis and have questions or just want someone to talk to, please reach out and know that you aren’t alone!
I’ve included some photos from my recovery below. They aren’t gory or bloody, but if you don’t like seeing these types of photos, you may want to skip over those sections.
I had laparoscopic surgery in January 2016 that diagnosed me with Stage I endometriosis and had 30 lesions removed. This was my first ever surgery and was a pretty quick and easy recovery. I had the surgery on a Thursday afternoon, walked around the Indianapolis Home Show on Sunday, and was back at work on Monday. There were three tiny incisions, only one of which is still visible today (at the bottom of my belly button). Later that year I was diagnosed with Chron’s Disease but didn’t have any endo pain thankfully. 2017 was a pretty easy year health wise, with no surgeries or procedures, but was also packed with building a new home, planning our wedding, converting to Catholicism, and travel. In March of 2018 I started noticing left ovarian pain regularly and asked my OB/GYN to do an ultrasound to see if it could be a cyst. Nothing was found and was told I could be mistaking the pain for Chron’s pain. The pain got worse on my left side and would go down my leg and affect how I walked and sat. I remember one day in April, I was at Target pushing the cart and found myself having to stop and lean on the cart for support because I couldn’t move my left leg to keep walking. The pain was too intense if I sat for long and felt like I needed to stretch out. Laying down was the most comfortable, but didn’t take the pain away. There were several days this spring where I would lay on the couch from late afternoon until bedtime with a heating pad because anything else was just too painful. I had a colonoscopy in June to see if there was something Chron’s related causing this pain – things had gotten worse with my Chron’s but not anything that should be causing the leg pain. I went back to my OB/GYN and asked if we could do another surgery to see if the endo had grown back. He didn’t feel comfortable performing the surgery but recommended me to a specialist. I had an appointment in July and was told that same day we needed to do another surgery.
My Hospital Experience
Surgery was scheduled for the morning of August 2. I got to the hospital two hours before surgery and was taken straight back to a room on the surgery floor. Once I changed into the hospital gown, two nurses came in to start getting me hooked up to IV’s. The nurse that stuck the IV in said my vein blew, which I had never had happen. She then tried my right hand and it blew too. I hadn’t been nervous about the surgery up until that point, because it should have been a quick and simple thing, and started tearing up and getting hot. There was another nurse come in who tried the IV on my left hand and thankfully it worked. They also added compression cuffs to my legs but didn’t have them turned on until the surgery. Jason and my mom got to come back to the room once I was all prepped and sat with me until surgery (about an hour later). I had my camera with me so I could get an Instagram photo while I was there (don’t judge LOL) and my mom snapped this picture of Jason trying to get “the shot” for me.
When they wheeled me back to the OR I started to get shaky from the nerves – I felt like I had chills, but was sweaty. I started getting scared while thinking how I would feel once I woke up and hoping it would be similar to the last surgery. I was only awake in the OR for about two minutes while I confirmed my name, DOB, and what procedure I’m having done. I scooted over to the operating table, which is so narrow that I felt like I would fall off. As soon as I laid down, they immediately attached the heart rate monitors and I heard the anesthesiologist say I would be asleep in ten seconds. I felt my eyes get heavy and felt like I had been drinking, but was asleep within a few seconds of him saying that.
When I woke up, I remember asking the nurse “is it over?” which is what I’ve asked any other time I’ve woken up from surgery haha. I don’t remember being wheeled back to the room where I had been originally, but I remember the nurse asking if I was ready for Jason and my mom to come back to the room – I said yes and felt like it took an hour for them to get there (it was only a few minutes). I kept falling back asleep but would get startled awake easily. Within an hour I felt like I needed to go to the bathroom, but started crying because I didn’t feel like I could get up and didn’t know what else I could do (effects of the anesthesia). A nurse helped me up and walked me to the bathroom. When I got back to the room, Jason and my mom convinced me to get dressed and go home instead of getting back in the hospital bed and having to get back up. I don’t remember getting dressed or the car ride home, but remember crying when we got home because the doctor didn’t tell Jason how many lesions were removed and I really wanted to know haha.
I don’t remember much from the first day at home, other than laying in bed, scrolling through Instagram and would fall asleep with my phone in my hands or I would drop it and it would wake me back up. Despite being tired, I couldn’t stay asleep. I kept having dreams that felt like hallucinations and would wake up. I couldn’t sit up on my own for the first 3-4 days, so I would call Jason (who was downstairs) and ask him to come help me. I couldn’t wait to look at my incisions, because I couldn’t tell where they were without seeing them. I was in pain, but it wasn’t the worst thing I’d ever felt. My throat was sore from being intubated during surgery and lost my voice for the first 2-3 days. I kept having to clear my throat which was painful because you use your ab muscles when you cough. I was also pretty itchy the first day after surgery (mainly my nose), which is an effect of the anesthesia and went away sometime during my second day post-op. During surgery, CO2 is used to inflate your abdomen so the doctors can get a better view of what’s going on. They release most of it, but some remains and will take a couple of days to dissolve. During my first surgery all of the pain went up to my shoulders. This time the pain stayed in my sides and back and made breathing deep difficult. It also felt like my stomach would pop because it felt so full of air. During the first week, when I would stand up, it felt like my insides would drop and be tugged on. There was also a lot of pain in my left ovary (where it had been before surgery) so I wondered if there had been any work done in that area. It took eight days for me to feel somewhat back to normal. It started taking a toll on me after four days (since my previous surgery was so easy) and would get frustrated that I couldn’t move around on my own and couldn’t leave the house.
I got to visit my doctor two weeks after surgery to have my incisions checked and go over the surgery results. Jason and I were able to watch the video taken during my surgery and see exactly what happened which was so cool! I got to take photos home too (don’t worry, I won’t include them in the post). My diagnosis had gone from Stage I to Stage II and had nearly every surface lasered to remove the endometriosis. The lesions had grown on my uterus, ovaries, intestines, and abdominal wall. My left ovary also had scar tissue on it that had attached itself to another organ (I can’t remember exactly where the doctor said) so it was being pulled from where it should sit in my body. The scar tissue was removed so my left ovary should be back to its normal location now. Even though I had felt worse, I was still surprised to hear that the endometriosis had gotten that much worse. Part of me was scared that I would have the surgery and be told “nope, nothing’s wrong, it’s all in your head” – it was nice for there to be a definitive reason for the pain I had been feeling and such a relief that the lesions are gone.
As of today, both of my hip incisions are completely healed but are still red – this should go away over time and be practically unnoticeable. My belly button FINALLY healed two weeks ago after having five appointments where it was re-opened and cleaned out. There was a problem with the way it was stitched shut that wasn’t allowing it to heal properly. It’s still sore if something presses directly against it (like the cats stepping on me lol), but overall I feel healed from the surgery.
Unfortunately I have been having issues since the surgery and will be having another surgery tomorrow morning. I have been bleeding every day since surgery – it’s been 116 days, or almost four months. The first month of bleeding seemed normal and my doctors told me that it could be a result from surgery. It was starting to take its toll on me both physically and emotionally. Earlier this month I had my three-month follow-up appointment and let the doctor know the bleeding hadn’t stopped – we did an ultrasound that showed my uterus has grown too thick and need to have surgery. I don’t know if this was directly related to my surgery, or just a coincidence, but I am crossing my fingers that this surgery is the answer I’ve been needing.