How Surgery Recovery Went For Me

As someone with stage 4, deep infiltrating endometriosis, I am quite familiar with surgery. My first ablation was in 2009, and I had another six months later in 2010. Then I had my first excision in 2020 (before the vaccine!) and a second in 2021.

My recovery following endometriosis surgery

I often see questions from folks who’d like to know how recovery went, and it was something I furiously Googled before my first excision, so I thought sharing my experiences would help. One thing to know is that I have mast cell activation syndrome and probably hypermobility as well, so those may have created more complications for me than others might experience.

Ablation surgery one

I had little time to prepare for this surgery. I’d had a recurring and worsening pain in my pelvis I could no longer ignore, and I was diagnosed initially with an ovarian cyst.

The gynecologist wanted to remove it right away and scheduled surgery for the following week.

I didn’t know anything about surgery, so I only went off of the packet her office gave me. It said some people needed just a couple of days before they’d be back to work.

I thought that sounded ridiculous, so I took a week off of work. As it turned out, I needed two before I could return to work, and even then, it was a stretch.

It felt amazing to recognize that the pain that had plagued me for nearly a year had disappeared. The first several days, I stayed in bed, and my partner at the time brought me meds and meals.

The strongest memory I have of that time is watching Netflix on my small laptop, working through a stack of novels, and seeing the light change across my bedroom walls as the sun traveled across the sky. I didn’t go downstairs for the first several days.

One day, after I couldn’t take being in that room anymore, I attempted to take a walk outside while holding on to my partner. I walked really slowly, and even still, I pushed myself too hard and thoroughly exhausted myself.

We only walked a couple of blocks. I think it set my healing back as well.

Another thing I remember is having to give myself an enema because no one told me to take a stool softener, and the pain medications stopped me. I tell everyone to get stool softeners now.

Finally, I remember how bad the referred shoulder pain was after this surgery. Almost worse than the incision pain. No one recommended Gas-X or walking around, so it took days for it to dissipate.

Ablation two

I didn’t like my first gynecologist, so I went to a second one when my symptoms returned just three months after my first surgery. But she recommended the same procedure.

I didn’t know at the time that ablation was not the best procedure for endometriosis, especially the persistent type I had. I also didn’t realize that some folks regrow endometriomas like they are trying to win a race, and I am one of them. So I let her burn the lesions and drain the cyst, and I thought I would be much better this time.

I learned from my first surgery and set myself up with pre-made meals, the shows and books I wanted to have nearby to keep myself entertained, and stool softener, and I took two weeks off of work.

I was about to graduate from graduate school and had a full-time job, and I think I might have even worked on my final project during recovery. But I also spent a lot of time in my bedroom again.

I made sure to rest as much as possible, and I was able to transition back to work more easily.

Excision one

I had to Google when the Covid vaccine was first distributed because I can hardly believe now that I had surgery when there weren’t even vaccines yet. But I did in July 2020.

The decision to have surgery came after a ruptured endometrioma, an excruciating experience I wouldn’t wish on my nemesis. I’d researched the heck out of endo after my trip to the ER, and I knew I wanted to find someone who could do excision.

A friend recommended an excellent surgeon in town who I trusted. The surgeon didn’t bat an eye when I said I’d been researching, and we talked through the options in depth.

She brought in a bowel surgeon because we discovered after an MRI that my uterus was tethered to my bowel.

This surgery was much more intense and longer (six hours) than my first two. The bowel involvement and the ruptured endometrioma made it more difficult and technical.

My surgeon’s office provided me with a thick and in-depth packet that helped me prepare, and this time I gathered many more supplies.

I knew to have Gas-X on hand to quell the referred shoulder pain, and it worked wonders. I borrowed a walker so I could be up and around more often. During the week before surgery, I made several meals ahead so I could easily heat up food, and I also set up a meal train.

Once again, Netflix was my best friend. I also took more naps and rested as much as possible. I was off of work completely for three weeks.

My energy came back at a snail’s pace, and I had vertigo, hot flashes, and night sweats. Three weeks later, I added computer work back, but I didn’t see clients until six weeks later.

Ablation four

I’d lost my ability to walk further than about 1,000 feet at one time within six months of my first excision surgery. The pain in my leg, ankle, and heel was excruciating.

No one could figure it out, not the foot and ankle doctor, not the spine doctor, not a chiropractor, not an acupuncturist, not my primary care physician.

I read up on sciatic nerve endo and decided I needed to ask my surgeon about it. She had heard of it but didn’t know how to do the surgery, so she referred me to someone in Boston. After consulting with him, I booked an excision surgery.

For this procedure, I had to drive to Boston with my partner and stay in a hotel. The hotel turned out not to be safe for me mast-cell-wise, so I had to come back to Vermont the afternoon of the surgery, which I hadn’t planned.

It was a big blow because I’d done so much work to pack all the things I’d need, and we’d unloaded it all into the hotel room the night before the surgery.

Even though it was a rough beginning, I was the best prepared for this surgery. I had another meal train going, I borrowed my friend’s walker again, I had all the right medications, all the media ready, a freezer full of meals, and I knew that recovery was going to take a long time.

This time it was four weeks before I did any kind of work, and I didn’t see clients for two months. I rested, walked slowly, and didn’t tax my brain or body as much as possible.

I had an ER trip the second week because of some strange bleeding, but it turned out to be nothing concerning.

One of my incisions didn’t heal well this time, so I made a couple of trips to my surgeon to receive wound care. Eventually, it healed and closed up.

I struggled greatly with recovery. The dizziness, fatigue, brain fog, pain, hot flashes, and night sweats were rough.

The recovery happened during the hottest months of the year, so I struggled to regulate my temperature and be comfortable. I came back to work slowly, adding a few more clients each week until I was close to my previous capacity, and this process took five months.

Everyone is different, and your surgery recovery might look much different than mine. Still, I think there are some things anyone can expect: ample time to rest so your body can heal, the right tools and medications, the right support, and the right team to help you recover.

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