Managing Expectations after Excision Surgery

I saw so many posts on Nancy’s Nook from others who were a year post op that talked about how difficult the healing process was after surgery, but all I ever focused on when reading those posts was the part where they said their lives had changed. I should have paid better attention to the ones who said it was a process and that they were still overcoming challenges post excision surgery.

I was so desperate for a pain-free life that I unrealistically expected to be miraculously healed after my surgery with Dr. Sinervo. I kept telling myself and others that my battle would be over after this surgery. Boy, did I get a big slap in the face with reality shortly after! I came out of surgery with a horrid migraine, but I didn’t really feel any other pain. The pain I had been feeling in my chest, and shortness of breath was gone, and the post-op pain I was feeling was nothing compared to what I was dealing with before surgery, so I thought I was free to start living my life again and do whatever I felt like doing! The first thing I did was start eating anything and everything that I couldn’t eat before my surgery. I had missed out on enjoying food for so long, I was determined not to be limited to what I could eat again. I went back to work 5 weeks after my surgery, and although it was rough, I just kept pushing myself and convincing myself I was better, I could do this.

Five months after surgery, I went on a road trip with one of my best friends to Colorado Springs, she had never been to Colorado and we both just needed to get away for a bit. We were at a point in our lives where we were ready to overcome what we had been dealing with and decided we’d start by doing the Manitou Incline. There was a part of me that knew climbing up a mountain this soon probably wasn’t the best idea, but I wanted to prove to myself (and the world I guess) that I was stronger, and I could handle anything. Thankfully, we ran into an amazing local woman who had done the climb several times, and she did the entire climb with us, if it hadn’t been for her giving us helpful tips and having us take breaks, I would have pushed myself to the top as fast as possible. I was surprised at how easily my body handled the climb, but of course, that decision did not come without a price. I was paying for it afterward.

From about three weeks post op, until January of this year, I had this nagging pain on my left side. It was there every single day, and some days the pain would get quite unbearable. I also had daily lower back and pelvic pain that would worsen at times as well. I started to get very discouraged and fell into a dark depression over the fact that I was still in pain. I was terrified to tell my friends and family that I was still living with a lot of pain, for fear that they would think I made the wrong decision having surgery, or worse, that they would think I was making it up. I kept the pain to myself for a while until one weekend, I went on a trip with my best friends, and my body couldn’t keep up with our plans. I finally broke down in tears and told them everything. At that point, I thought this was just what my life was going to look like, I had done everything to try to get relief from the pain, and I was done fighting.

Thankfully, I got another horrible migraine the week I returned from that trip. I say thankfully because it got me to call my NP, Joleen. The migraine knocked me off my feet for FIVE days straight. I thought pelvic pain was a nightmare, let me tell you, I would take pelvic pain every day for the rest of my life if it meant I never had to feel the pain I had from that migraine, ever again. I called Joleen to talk with her about the migraine and let her know about the left sided pain I was having after surgery. She explained that the pain I had sounded like it was likely an adhesion from the surgery, and she knew what would help. Joleen told me I needed to try pelvic PT and referred me to Pam. I have already written about my experience with PT so I won’t go over that again. PT has been a very important step in my healing process post excision surgery.

It is important for all endo patients to know that excision surgery is only the first step to addressing our pain and illness, it is not a miracle cure. I think so often, we put excision on a pedestal and expect it to fix all of our problems. It most definitely will help, and when performed by a skilled surgeon, our chance at remission is much higher than with a regular gyn, but we are not going to wake up in a new body. Our bodies still remember the trauma of the disease, and the trauma from the procedure to remove the disease. Excision surgery is not the end game, but rather the beginning of our journey to healing.

If you are considering excision surgery, or have already had surgery and are struggling a bit with recovery, I would encourage you to remember that this procedure is just another step in the process to find healing. On the hard days, remember it takes a while for the body to repair itself and recover not only from years of the destruction of the disease itself but also from extensive surgery. Give yourself grace and listen to your body and what it is telling you. I have a very physically demanding job, and the positions I have to put my body in during the day are not helpful for the healing process. I had to communicate with my boss and my co-workers to let them know I had to take a step back and not push my body so hard anymore while I am still healing. Some days I have no choice but to see patients back to back, but on the days that we are fully staffed, I try to stay out of the chair and just do my job managing the clinic. On the days that I am sitting in a chair seeing patients more, I make sure I take time to stretch in between patients, and alternate between sitting and standing while I am working on them. I try, so I am not in those compromising positions for longer than 20 minutes at a time. Healing is all about setting boundaries for your body and sticking to those boundaries.

Speaking of boundaries, let’s talk about the role mental health plays in all of this. Stress is a huge trigger for inflammation in the body. Endometriosis and other chronic illnesses are often made worse with inflammation, that is why it is recommended to follow an anti-inflammatory diet and lifestyle. Yes, excision surgery removes the disease from our bodies, but what caused the disease to get there in the first place still remains, so we must be conscious of the things that could increase our chances of having recurrence. I tend to carry a lot of stress because I care so much about everything, sometimes too much. I always want to be the best wife, best co-worker, best friend, best sister, best aunt, best daughter, etc. I rarely say no when I am needed, and I will push my body to the point of pain and exhaustion to continue to be the best I can be. My body has not healed yet, because I have not given it what it needs to heal. This is something I am now actively working on.

The first step was cutting back on my workload at work and at home. Housework can wait if my body is begging for rest. I stopped going to the gym twice a week because I’d be in even more pain after pushing my body through a work out it didn’t have the strength to endure. I started doing yoga at home and realized that I love it. By the way, Yoga with Adrienne on YouTube is a great place to start if you are thinking of giving yoga a try. I have weekly appointments with my chiropractor, Dr. Pomeroy and with Pam for PT. I put my energy into doing what it takes to heal my body. I have become more aware of the impact that negative energy and toxic behavior has not only on my mental health but my physical health as well. I have decided it is time to stop putting myself into toxic environments. This is all very recent, so I’m still working on focusing on my mental health and setting boundaries, but I can already feel the difference it is making in my life. The next step for me is to start seeing a therapist. I have seen the difference it has made it the life of so many others, so it’s something I want to try for myself.

I still have some pain most days, but I am more accepting of it now, knowing that I’m still in the middle of my journey to find healing. Maybe I will never be pain-free, or maybe I will. Either way, I am content with where I am at right now. All that matters at this point is focusing on my own health and becoming the best version of myself without compromising my mental and physical health in order to do so. My hope for you all is that you can come to this place too. The journey to get here isn’t easy, but it is worth it. Keep fighting, and keep managing your expectations properly throughout the process.
You’re worth it.

Laura