Endo Journey: Post-Op
Valentine’s Day was over a month ago, and sadly, the day of love and romance did not end romantically for me. My bad mood on the day was not because of a lack of chocolate or a cute stuffed bear, instead it was due to receiving the results of my recent pelvic laparoscopy. There were high hopes that the surgery would rid me of my chronic pain for at least a few months, but my pain returned barely two weeks post-op.
If you read my previous post about my journey to getting an official endometriosis diagnosis, then you know I was expecting my surgery to come up soon. About a month after the first post went up I was going in for my surgery (pelvic laparoscopy is the only way to officially diagnose endometriosis.) My insurance gave their stamp of approval and the surgery was scheduled for January 31st.
My surgeon and I had no idea what might be found during the surgery. The prevailing theory was endometriosis, but there was always the chance nothing would be found, which was the scariest part. For eleven years I’d been waiting for answers to the mysterious pain that had been plaguing me. If I came out of that surgery with no answers I knew it was going to be devastating.
Leading up to the surgery I scoured my most trusted source (Tiktok) for ideas on what to expect on the day and what I would need to prepare. The TT girlies did not fail in providing me all the info I needed (and I shared a prep list of things you may need for this surgery below.) My finger scrolled up and down the app as I watched other women get ready for their own pelvic laparoscopy. To be honest, I found that watching those women prepare for their surgeries made me less anxious about mine and feel not so alone.
My arrival time was to be 8am on that chilly Tuesday morning. I woke up at 6am to get ready because that was a whole process. Before surgery I had to bathe with an antiseptic soap, such as Dial, and the soap I was given at my pre-op appointment (Hibiclens). I had to bathe with this twice, once the night before and again right before the surgery. This ensures you have less germs and bacteria on your body to cause infection during the surgery. Not only did I have to be extra mindful when bathing, but I also had to sleep in freshly washed bed sheets and put on clean clothes. That meant a lot of laundry to do in the days leading up to the surgery.
The procedure was out-patient so I didn’t have to go to the hospital, and I was able to go home the same day. My surgery was across from the hospital, at the Center for Ambulatory Services, where they have most out-patient procedures. When me and my dad arrived we were promptly brought up to the pre-op area. I was then told to change into a gown, socks, and cap. Things moved pretty quickly from there as the nurses came in to insert my IV and the anesthesiologist met with us. Next thing I knew Xanax was being pumped into my IV to help calm me as they wheeled me into the operating room. One of my biggest fears is being put to sleep so that was the only thing that made me nervous. However, the Xanax did its job because I was so calm and ready to go as I got onto the table and laid down. The anesthesia hit me almost immediately because I remember nothing after lying down until I woke up.
A year before my surgery even took place I was told what it entailed and what method would be used. Although I was asleep, I can vividly imagine every step of the procedure due to the mountain of research I collected for a year. The surgeon cut the tiny incision in my navel, to insert the slender laparoscope, and then he began the thorough search around my organs, vessels, and tissue. Pictures were taken during the procedure to show me later. Another slightly bigger incision was made right below my bikini line to insert the instruments used to cauterize any endometrial tissue. Once everything was taken care of to the surgeon’s satisfaction, they sewed and glued me up before delivering me to the post-op area.
If you’re familiar with surgical methods used to treat endometriosis then you know that excision surgery is the gold standard and best option to diagnose and get rid of any endometrial tissue. Surgical excision is the method of removing tissue with a scalpel or sharp instrument, and is more effective in removing all of the destructive tissue or lesions. This also allows doctors to send tissue off for biopsy to get confirmation.
So you may be asking why didn’t I get surgical excision? Long story short the universe kept getting in the way. It wasn’t for lack of trying because I called several doctor’s offices and surgeons in the Atlanta area (which is the closest area to me with surgeons who do surgical excision), and I never got an answer or call back from several of them. Others told me the wait time for my surgery would be months to a year away, and that was not gonna work. In the end I settled for the second best option, which was to go with the most experienced surgeon in my hometown that my insurance would cover. I don’t totally regret the decision, but if I were to do it over I would definitely try even harder to find a surgeon who does excision.
I’m not too sure how long the procedure took exactly, but I estimate around an hour and a half. That was my first sign that my expectations might be let down because it would have taken longer if things had been bad. After being given pain meds, I was wheeled downstairs where my dad was waiting to pick me up. It was hard to talk with the pain meds already kicking in, but it was even harder to talk while holding back tears. The feeling that the outcome I’d hoped for wasn’t attained really hit me right after the surgery.
Unfortunately, I was told I would have to wait two weeks after my surgery to find out if anything had been found. It was a tortuous two weeks that kept me on edge. I laid around for the first week on pain meds and binge watching every show I could find to distract myself. By the second week my incisions had healed, so I went back to work in hopes that I wouldn’t drive myself crazy with the anticipation.
To my surprise I didn’t have to wait two weeks to find out that the surgery had not helped my pain go away at all. Two days before my post-op appointment I began to feel a strange, but familiar, feeling in my hips. That feeling morphed into the sharp and biting pain in my pelvis and lower back that I knew so well. As much as I wanted to pretend it wasn’t there, the pain continued to grow until I was using my cane to get around again.
I walked into my post-op appointment with my cane, and my doctor asked if I always walked with an aid or was that new. It wasn’t new, but it was unexpected for both of us. He showed me pictures of my organs taken during the surgery, and I would love to say the results he discussed with me were clear and helpful, but they were not. Everything looked normal, except the presence of some “stuff” as he described it, which I take to mean endometriosis. He was able to cauterize what he found and clean everything up.
Of course, I’m glad my organs were in good shape and that there wasn’t major damage, but the disappointment still settled in. I couldn’t say much during my appointment because I was holding back tears, and I was too exhausted from a lack of sleep due to the pain. A CT scan was then scheduled to see if anything else would show up to explain my pain.
The CT scan came back negative, and let’s just say I did not handle it well. I pushed my feelings down for almost a week until one day it spilled over. Tears ran down my face for an entire day. My sobbing made explaining to my dad what was wrong nearly impossible. Fortunately, he was able to make out my incoherent mumbles through my choked sobs. After some encouraging words and a fatherly hug he convinced me to take it back to the drawing board. This meant contacting my primary physician to talk about possible next steps.
Now you’re all caught up on the drama of the past month. For the future, we can expect more scans and tests. I have an MRI scheduled to see if anything will show up on that. MRI’s can give a deeper look at what’s in the body such as, nerves, ligaments, tendons, and more. We’re not sure if anything will be found, but cross your fingers I get some kind of answer.
Along with that I had to really swallow my pride and admit that I wasn’t handling the outcome of everything so well. I made my doctor aware of my current mental state regarding my pain, and she referred me to a therapist. My goal in sharing this is to encourage others who deal with chronic illnesses to reach out for help even if they feel it’s not necessary. You can carry the burdens of being ill for a long time, but everyone reaches a breaking point. Instead of waiting to get to that point let’s encourage ourselves and others to be proactive with their mental health rather than be reactive.
In my obsessive, perfectionist mind I had imagined being able to give you all a clean and tidy outcome of the surgery. There was the hope that the conflict in my story would be neatly wrapped up and resolved. That outcome was so clear in my mind that it has taken me a bit longer to adjust to the reality. The answer is not clear and concise and there are often setbacks. In fact, there are more questions to be dealt with and a new plan to be formulated.
At the end of the day, I still share my journey here on the chance that it might be helpful to someone in a similar position. My goal has always been to be as relatable as possible and make this a safe space for myself and all of my readers. I hope those with similar struggles find that they are not alone and that my struggle will make someone else’s easier.
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Keep Loving, Keep Reading, and Keep Drinking Lattes!
Xoxo - Erica
