excision surgery

In 2019, while doing fertility treatments, my doctor (Ana Nackley) recommended doing a laparoscopy. I was having the worst period pain, and she felt like we needed to do this exploratory surgery to find the root cause. She explained that they would inflate my abdomen with gases, insert a camera in though my navel, and make two incisions down near my pubic area for the surgery tools.  I was nervous, but also anxious to hopefully find an explanation for my pain and fertility issues. 

When I woke up from surgery, she explained that I had Stage 4 Endometriosis.  My uterus was attached to my intestines, and I had adhesions all over my ovaries, fallopian tubes, and abdominal area. In her words, this explained why "nothing was getting where it needed to go."  She burned away everything she could, but told me that she didn't remove the endo from my diaphragm since she "didn't want to burn through the lining."  She was hopeful that with everything cleaned up, I would have a higher chance of becoming pregnant.  Well, we know that wasn't the case because our IVF wasn't successful.  The embryos never made it past day 3 of development, so I guess they never even had a chance to attach in my uterus.  But I also wasn't able to naturally get pregnant after the surgery, so overall, I felt disappointed.

And the recovery was so awful.  Dr. Nackley had explained that once the surgery was over, they would do their best to get all the gas out of my abdomen, but that it was nearly impossible to remove it all, so I would have discomfort from that.  She explained that the gas tries to rise, so that I would feel the pain in my shoulder.  Seemed weird, but that's exactly what happened.  I had that gas pain for days and it was excruciating every time I moved.  But especially when I went from sitting to laying down, or the reverse. 

Fast forward 18 months, and the painful periods returned.  I was so discouraged.  I started researching treatment options, specifically for "wide excision", which is cutting of the endometriosis instead of burning or fulgeration which is what I had done in 2019.  My friend Megan had told me about the excision surgery, but it is definitely not as common as the fulgeration. I finally found an amazing option, tried to book a consultation, and discovered that my local searches had somehow led me to a facility in the Boston area.  Oops!  I decided to join an Endometriosis support group on Facebook per a recommendation on an endometriosis website, and this was the turning point for me.  SO many people were talking about a guy named Dr. Anthony O'Connell who was a specialist in excision and came highly recommended by a lot of women in the group.  I read comment after comment about how caring he was, how attentive he was, and how good he was at this surgery.  

So, I booked a consultation with him and it was exactly what I was hoping for. His office is in North Dallas, so I met Kevin there one day during the week. I had sent all my medical history to his office, but since most doctors don't read that before the visit, I was pleasantly surprised that the first thing he wanted to discuss was that I had been through some hard things in the last few years.  He knew about my miscarriages, the pain I was having, and the failed IVF.  I was honestly shocked at how much he knew and how much he cared about me as a patient. We talked about our goals for our family, which was another whole issue.  Before this appointment, I told Kevin that I felt like we needed to make a decision about whether or not he should remove my female organs if they were covered in endo again. Although I thought I had come to terms with not having any more kids, the idea of a total hysterectomy was so final and made me really sad. But I also didn't want to open this bottle of hope that MAYBE we could have a baby.  I really felt conflicted, but as we spoke to Dr. O'Connell, he talked about his wife having to get a hysterectomy and he said that if I was his daughter, and if I was okay with potentially having another surgery in the future, that he could recommend doing the excision with him, doing hormone therapy to keep the endo away, try to have another baby, and if that's not successful and if the pain comes back, to then do the hysterectomy.  

Kevin and I both felt okay with that plan, and although I really wasn't getting my hopes up about a baby, I felt better leaving things intact so that I didn't need to really go crazy with the hormones to keep my body "normal."  We also discussed the endo on my diaphragm and he wanted me to meet with the thoracic surgeon (Dr. Lele) who would remove it from that organ.  He also explained that they would remove my appendix while they were in there since "half the time it's bad anyway and you just don't know it because you have so much localized pain."  Since you don't really need your appendix, I didn't mind.  He said that he would either remove it, or a general surgeon would do that portion.  During the surgery, he would remove all the endo he could, then Dr. Lele would step in and remove it from the thoracic area, and then the appendix would be removed.  It was like a one-stop shop, which seemed great :)  

I was so done with the painful periods, so I was excited to be having surgery, but I was also remembering how painful the recovery was and expressed my concerns to Dr. O'Connell.  He explained that yes, they would inflate me with that gas, but that they also have really good tools to expel the gas when the surgery was over.  He also explained that he would be performing a robotic surgery (with the DaVinci system), and that I would have four incisions on my stomach.  If Dr. Lele needed more tools to access the endo on my diaphragm, I could also potentially have additional incisions. It all seemed pretty involved, but I also felt like I was in really good hands.  Dr. O'Connell does this surgery multiple times a week, and I felt a lot of reassurance from our visit.

So, we scheduled the surgery for August 25th, but then Covid hit us and I wasn't able to have surgery until the 27th of October. (Apparently there is a rule that you can't have surgery for 6 weeks following Covid.)

We asked my mom to come and help with me and the kids, and she was happy to do it.  I know I could have also asked Bev to help, but I really wanted my mom to be here with me.  She flew in while the kids were at school and seeing their reaction at pick-up was pretty adorable.  Colby ran straight out of the school and right into Nay Nay's arms.   

It was Wacky Day at school, hence the special outfits :)

Brooke went right in for a hug as well..

They love their Nay Nay!!  Brooke could hardly fall asleep the night before because she was SO excited for my mom to get here.  She came downstairs about 15 minutes after I tucked her in to tell me, "I'm not excited that you're having surgery, but I'm REALLY excited for Nay Nay to come visit us.  Can I just stay up and help you get ready?"

After school, we headed right home so they could play :)  I was having the worst time because I started my bowel prep mid-day, but it was working, so I guess that's good.  I was back and forth to the bathroom all afternoon, and somehow managed to take Brooke to her softball practice that night. Luckily, since Mom was there, I could go to the bathroom as needed and she kept an eye on the kids. 

We had to wake up super early the next day and arrived at the hospital by 6 AM.  I was prepped and ready in no time, then we waited forever for the 3 surgeons (Dr. O'Connell, Dr. Lele, and a general surgeon for my appendectomy) to arrive to get this party started.  I was a bit nervous heading into the surgery since I knew how hard the recovery was last time, but I was trying to just be calm.  I had also had a long conversation with the anesthesiologist the day before about my Grandma's adverse reaction to succinylcholine. I didn't have a lot of answers to his questions, but based on this family history, he said the operating room would be prepped for the off-chance that I had malignant hypothermia.  It all seemed very scary, but I tried to remind myself that I have had multiple surgeries and always been fine. I guess they didn't use inhaled anesthetics because that's somehow related to the adverse reaction? 

Right before I headed back, Kevin asked if I wanted one last picture of my stomach before surgery.  I'm glad he thought of that because it looked pretty rough afterwards.  Not that it really matters, but I like the before and after shots. 

The incisions were bigger than I thought they would be because my last ones were tiny, but I think this was different since it was robotic. I felt a little rough coming out of the anesthesia, but that pain pump was pretty magical.  I didn't have ANY pain from the gas, which was a complete and total miracle in my opinion.  The nurses were amazing and I was so grateful that I was able to stay the night and have my pain managed all night long. If I would have had the surgery in August, they weren't gonna let me stay the night (due to Covid), so it was a hidden blessing to have the surgery rescheduled. 

Trying to smile through the pain, haha.  This picture just makes me laugh.  I really was doing fine, although I don't look it :/

We Facetimed the littles that afternoon because I knew they would be worried about me.  I was so glad that they were at home being loved on by my Mama :)

After the first 24 hours, they cut the pain pump, and although they gave me different pain killers, they weren't quite as effective.  They wanted me up every hour and walking around, which was pretty difficult.  I was very slow, but Kevin was extremely patient as we walked those quiet halls. By mid-day, I was ready to go home, but we were waiting on a visit from Dr. O'Connell.  The nurses were unsure when he would get there, and he didn't show up until nearly 5.  It was good to visit with him and go over the images from the surgery.  His findings were a deja' vu from my 2019 surgery.  My uterus was attached to my intestines again, and the adhesions were everywhere.  He was able to cut it away, and cauterized some of the areas even after cutting the endo away.  Dr. Lele was able to remove the endo from my diaphragm, but didn't see any additional signs of it getting into my thoracic cavity, so he didn't need to make any more incisions.  That was a relief, because he had also told me that he might have to make an IV Port and collapse one of my lungs if he suspected it had moved into the rest of the thoracic cavity.  Oh, and all went well with the removal of my appendix.  

Dr. O'Connell went over the pain killers I would go home with, and also explained that he was prescribing hormones to inhibit the growth of the endo, but added the caveat that I should take them "only if my body could handle them."  When I asked for clarification about what he meant, he said that the side effects could be premenopausal symptoms and psychosis. I thought he was joking the way he casually mentioned psychosis, but he definitely was not.  (Update:  I took those hormones for the first two weeks and was totally fine, but then started having cold sweats at night and felt like garbage, so we discontinued those and switched to oral birth control pills.)  He also sent me home with a belly binder which was supposed to help give me more support on my abdomen.  I had a love/hate relationship with that thing.  It was definitely supportive, but also pretty restrictive and uncomfortable.  I mostly wore it when I was up doing a lot of walking. 

After chatting with Dr. O'Connell, we had to wait for the discharge paperwork and didn't leave until nearly 7.  We headed straight to Kroger to pick up my prescriptions, and also tried to walk over to the Starbucks counter to get some caramel apple cider.  It was on the opposite side of the store from the pharmacy, and that was definitely a mistake.  Especially because they didn't even have the caramel to make what I wanted.  We then had to walk all the way back across the store and I was in a lot of pain.  We got my meds, went to the Starbucks in the same parking lot as Kroger, and they didn't have the apple cider, so I was straight out of luck, haha.  We got soup from CFA instead, and headed home to get medicated.  I was able to sleep in my bed, which again, was a miracle considering that with my last surgery, I had to sleep sitting up on the couch for days because every time I tried to lay down, I had all that pain in my shoulder from the gas. 

Over the next few days, friends dropped off flowers and meals, and I felt so incredibly grateful for wonderful and thoughtful friends. 

Mom had to leave the day after I got home, which we were both pretty sad about.  Aunt Lori and Uncle Dean had flown to her house for a visit, and since there was some drama surrounding my mom coming to help me, their trip couldn't be cancelled. But I was just so happy to have her here for a few days.  Nothing is better than letting your mom take care of you when you're not feeling good!  

So, we just spent the morning relaxing together, picked up the kids from school, had pizza together, then Kevin took her to the airport.  

On Sunday, Bev came over and brought the yummiest enchiladas.  I ate on those for days!!  She stayed a few days to help drive the kids to and from school since I was still taking pain medication, and it was super nice to have a little extra help. 

At the one week mark, I started having the itchiest stomach!  I assumed it was a reaction to the iodine they used to clean the area, but it just kept getting worse.  I took pictures to document the progression...

It moved up to my chest area as well and I was just SO dang itchy!

I finally called Dr. O'Connell and he recommended taking benadryl to try to calm down the reaction.  I can't remember if he also called in a steroid, but I think it calmed down with the benadryl.

I also still had all the glue on my incisions, so he recommended taking that off as well.  He told me to spread vasoline on the glue, leave it for 15 minutes, then wipe away all the glue.  Well, it didn't work at all, so I eventually just peeled the glue back.  It seemed fine for 3 of the 4 incisions, but on one incision, it caused it to bleed on one end.  That didn't seem good, but everything healed okay, so I guess it was fine?

Overall, the recovery was good, but I had no energy to do anything.  I was taking a nap each afternoon, and really could barely manage to do some laundry here and there.  I was fine picking the kids up from school and doing the minimum mom duties necessary, but it was hard not to have my usual energy.  I remember Dr. O'Connell saying that it could take 6 weeks to feel back to "normal", but I guess I wanted to heal ahead of the curve, haha.  It really did take 6 weeks before I started feeling more like myself.  But I am really hoping that this surgery will help me feel well for the next few years :)