After nearly 3 months, I have finally been able to finish this blog journal entry about my surgery and recovery so far...I share to spread awareness, keep loved ones informed, educate, and destigmatize certain things like POTs, Dysautonomia, mental health, invisible chronic illness, etc. Thank you for the support.
My laparoscopy endometriosis surgery was on Wednesday, November 26th. Of course, the twin cities had to have a bunch of snowfall that stuck the night before and into the morning of surgery. This made my mom and I a little late to the check in for surgery since she had to clean the car off and go slow on the roads since they weren't full plowed. My mom and I left at 5AM and it took us 45 minutes to get there. That was a frustrating start to our very early morning but that is living in MN for yah.
When I arrived, I checked in, got gowned up, connected with the nurses via my Wicked compression socks, got poked three times until they could reach a vein, met with my surgical team, told my mom I loved her, got drugged up and don't remember making it to the OR. I woke up in recovery surrounded by nurses and other unconscious folks. I remember shaking uncontrollably as I typically do after surgery and my pain level was at an 8 with some mild nausea. I didn't want to play around with the nausea, so I asked for meds right away. I remember practicing some DBT mindfulness skills to help me get through those tough moments coming out of surgery and reorienting back to consciousness.
After I was more awake and stabilized, they wheeled me to a bathroom where my mom came to help me use the bathroom and get dressed. Then I was wheeled to a private recovery room with a useless ice pack. Once I was even more alert my mom told me they did find endometriosis and before she could get into the details of what was found--I sobbed feeling some validation and relief.
I haven't really had the chance to process any of this due to how busy I have been. I told my mom I was ok and that I just needed to let it out a little bit, it hurt to cry since uncontrollable sob-crying uses abdomen muscles, and I have three incisions there--two on the left side and one on my belly button.
I used my emotional regulation skills of containment so my mom could tell me everything in detail. Once my mom was finished, I sobbed again. At some point we were interrupted by a discharge nurse who asked if everything was ok and I said yes, I was told they found endometriosis. She left and gave us some time before another discharge nurse came in to help me get out of the hospital and back home.
I was home by 2PM on the day of surgery. I feel extremely lucky and grateful to have my mom who is a homecare registered nurse look after me until the following Sunday, so for about five days until she had to go back to her life and I was on my own.
The first five days post-surgery went as smooth as it could have gone and a big part of that is because my mom took great care of me. We binged watched Stranger Things to get her caught up for the final season while I played games on my phone and she finished crocheting the queen-sized olive-green blanket in the video below!
The post-surgery pain was rough in those five days but manageable because I knew it was temporary, I had plenty of distractions, and strong pain medications. My pain tolerance is pretty high since I have been living in chronic pain for over a decade but that doesn't make living with pain any easier.
Once my mom left, I was isolated for a while and fell into a bit of a depression. I was having such mixed emotions about my diagnosis but glad to have answers. I was a bit more accepting right away thinking I could handle anything that came my way and I focused on self-care, reaching out to talk to people when I had the energy, and binging watching shows. I had a hard time sleeping and was fatigued all the time, my pain and chronic diarrhea were still bad among other post-surgery symptoms. Resting, my cats, talking to people and having friends/family visit, and getting lost in a tv show is really what helped me get through those two weeks.
Two weeks post-surgery, I was at my endometriosis (endo) post-operation appointment which brought more discoveries than I was prepared for. I learned that I have stage 2 endometriosis and that due to the extensive endo adhesions and scar tissue around my left ovary with it involving the ureter (the tube that connects the kidney to the bladder)--I have to see an endometriosis specialist and I need another surgery to free that up. And the adhesions that is obstructing the ureter could cause my kidney to fail if not treated surgically. My left ovary is still stuck to the side of my pelvic wall, but it is slightly more mobile than it was before surgery. My OBGYN is only a generalist one, not a specialist so she said there wasn't much she could do.
I started taking a new treatment but won't know if it is working until mid-late march. I am going to start pelvic floor PT soon and seeing an endo specialist at the end of February.
As I finish writing this post, I am three months post-endo surgery and I don't have the right words to express how difficult it has all been. I tried to prepare myself for this and I don't think I ever could. I will have to come back to this in more detail in a later post but to give you all a picture--my chronic pain hasn't gotten better, chronic diarrhea is still happening although it has slightly improved, and fatigue has never been worse. POTs and endo flares feel like they are happening constantly. Pre-syncope spells are more frequent; I fully passed out for the first time in a couple of years recently--so fucking scary and grateful that I didn't injury myself. I have asked myself multiple times recently if I should go into the ER, it never feels worth it. What can they do for me...???
The feelings of overwhelm have never been so high--not to mention living under domestic terror occupation by the federal government, with trying my best to support my clients, learn how to be a therapist through my clinical internship, get to all my work meetings and supervisions, while constantly trying to catch up with paperwork and homework assignments....I have been reaching crash outs basically daily. I have been crying and sometimes uncontrollably sobbing daily and crying myself to sleep nearly every other night. Crying is a very helpful emotional expression and outlet, and I kind of wish I did more of it. I can only do it when I am alone basically, it is kind of annoying but shows how strong my compartmentalizing skills have gotten.
Getting another chronic health diagnosis is so complex--I am happy to have answers, my pain and other symptoms are validated, I know what my (limited) course of treatment options are and, yet it feels like the beginning of a long stressful and hopeless journey in a lot of ways too. Endo does NOT have a cure and treatment options are not very optimistic whatsoever.
When I started writing this blog journal entry back in December 2025, I titled it "Surgery, New Diagnosis, and Moving Forward." I was adamant on being hopeful and optimistic with a pinch of realism. I decided to change "Moving forward" to "Nervous for Future" because trying to be hopeful and optimistic feels like such a fucking let down with everything I have been through. It is ok to not be ok. It is ok to be nervous and scared and want to scream. I really don't know what is ahead of me, this just feels like a very overwhelming beginning to a long stressfully painful journey.
You really know who your people are when they show any kind of support during surgery recovery and navigating complex health issues. I want to take a moment to thank all the people that reached out to me in anyway during my recovery and post-surgery. A big thank you to the family member that gave me a shower chair and loaned me a walker--so extremely helpful! And a special thank you to the friend that has been coming to my apartment 1-2 times a week to help me by cleaning my apartment. That has been a huge help for me!
I will keep leaning on my people, using my skills, and pushing through until I need breaks. It is ok to feel stuck, at a breaking point, like nothing will get better, to feel hopeless--nothing is wrong with that. This life is so fucking hard, and it feels impossible frequently--it is how we bring balance back to our life that matters. I don't know how or when exactly that will happen, but I am sure it will. It is about holding both the joy and love with the fear and suffering. Balancing acts are never easy...
I made this short video of my surgery and recovery to help with spreading awareness through visual means too!
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