Surgery story with a PTSD focus (Da Vinci minimally invasive laparoscopic excision of stage 4 endo)

Okay, this is quite long.

I have PTSD from a health issue years ago. PTSD is mine to manage and nobody else's. I don't think it's anybody's responsibility not to trigger me. I asked for trauma informed care from the medical team to support my management of PTSD, knowing that if something did activate it, I could handle it... but that a trauma-informed approach would make it easier. TIP! You can ask for trauma informed care!

I'm writing this for my PTSD BBs so I'm giving a LOT of detail.

WHERE

I had my surgery at a large regional healthcare system/research hospital in the US. Like Mayo Clinic, but not Mayo Clinic. They had copious resources, but a patient-centered approach. Because they're a big system, their charting and documentation is excellent! I had a step-by-step write-up of the surgery in my EPIC portal thing within days. I send questions via the portal and get a response from a nurse, then later from the surgeon if it needed to be escalated to her.

BEFORE LEAVING THE HOUSE

Bowel prep had me waking up a few hours before surgery. I listened to NSDR (non sleep deep rest) tracks and yoga nidra with my eyes closed.

I used Richard Miller's three surgery audios. They're under the subscription-only access on Insight Timer but they are probably available other places too. His other tracks are available for free. I actually have an entire surgery playlist on Insight Timer. Is it corny? YES. Can it help? YES. You can just go to the app and search for tracks!

WHAT I'D DO DIFFERENTLY

Getting ready took longer than I thought because I had to sit on the toilet for extended periods while my body flushed out everything. Next time I'd account for that in the schedule. I took my second shower with hibiclens soap. Wished I'd done a hair mask a few days previously... They don't let you use conditioner, so my hair looked dry and terrible. I had planned to blow dry it but ran out of time due to the aforementioned toilet requirements.

AT THE HOSPITAL

I brought a big pillow along on the car ride. Thank God I didn't need to go to the bathroom during that ride! At the hospital we gave the car to the valet and checked in. After a 20-minute wait, they brought me back to the pre-op room. A nurse took vitals and confirmed my informed consent. They put in an IV and other people stopped by: a resident, a fellow, the anesthesiologist, and I think the anesthesiologist's assistant? and the surgeon. They were all so friendly and ready to answer questions.

INFORMED CONSENT

One of them mentioned they may need to take an organ we hadn't talked about. Concerning! The surgeon said they would only take it if, while removing the cyst on it, something happened that made it unviable or a risk in the moment like bleeding. Made sense, and I felt like we were on the same page that the intent was to keep the organ and not assume that it was disposable.

I've had anxiety due to providers referring to the procedure as a hysterectomy, which it very much is not, so I mentioned that to every single person. 😎😂 They all confirmed we were doing a hysterecopy and the intention was to leave the uterus there as part of an overall fertility preservation approach.

IN CASE OF SURPRISES

I'd discussed with the surgeon that if something else needed to be done, I'd rather they close me up and do a second operation later after having a conversation with me. She added a note to my chart about it!

The ability to say yes to this feels extremely important to me. Obviously if something needed to come out right in that moment, I was fine with that and very much wanted them to use their judgment rather than mine. I mentioned all of that to a few people in the hope that if one person forgot, somebody else would remind them. I'm not sure if y'all will think this was overkill or not.... But I will say that while this practice was super organized, I've been at others in my region that were not. And I only get one of each of these organs! Like, I'm not messing around here!

TRAUMA-INFORMED CARE

Each pre-op person asked about the note on my chart requesting trauma-informed care. Some had heard of it and some had not. They asked to understand better, and asked how this should apply to their role. I felt seen and heard. One person mentioned they often had patients hold a medical device themselves while it was used, so they could have a sense of control. They hadn't heard about trauma-informed care in those words, but their approach was absolutely in line with it.

JUST A NOTE ABOUT TRAUMA-INFORMED CARE

Somebody asking curiously about this topic feels very respectful and ideal. I just wish every person in a healthcare system were trained on the basics of trauma informed care from the start. If you look at the national associations for medical professions, they have announcements and training listing this among the best practices. I don't know why it hasn't been disseminated more widely. It should be. I hope people will be requesting it and educating where possible. I know not everybody can do this, but it's been rewarding to speak with providers who were completely ignorant about it. One of them went and googled it and another, after trying what I asked him to try, said he was going to think about doing it with other patients.

SURGERY TIME!

My boyfriend got connected with a text service to see updates. He also had an ID number for me that he could see on a screen somewhere in a waiting room, for anonymous updates.

The anesthesiologist started meds and said it was a good time to say goodbye to my boyfriend. I said goodbye and feel asleep right away. They said I'd be awake until we got to the OR and I would transfer myself to a different bed! Haha, no. Next thing I was waking up and someone was putting ice in my mouth.

POST OP

Some of this is from my boyfriend because I was obviously out of it.

IDK why, but when I wake up from anesthesia I keep my eyes closed. I think it's about having a cocoon. Next time I'd ask if they can turn the lighting in my cubby down. Didn't do it this time, but once in the past I brought a big ball cap and used that to give my senses a break from the bright lights. A scarf would work. Just something soft and gauzy to let the waking process go at the pace of my body and mind.

PAIN AND MANAGEMENT

I was waking up every 30 seconds from pain. I can't remember whether it was gas (shoulder/diaphragm) or surgery pain. The anesthesiologist checked in and gave more IV meds.

I asked for heat to help with the pain. They offered a big bear hug heating machine, but then we went with heating pads. Eventually we got the pain down. It was slow going and gradual. The anesthesiologist said I should aim to be around a 3 of 10 on the pain scale before moving out of the post surgery area.

During this time, the only thing that got me to sleep was mindfulness and yoga nidra post-surgery audios. I went from waking every 30 seconds to waking every 5 minutes. This worked so well because I have 2+ years of training my body to rely on these. I felt calm the very first time I listened to them, but it was the years of investment and repetition that gave my body an instinctive response of sleep and rest. Mindfulness gets a bad rap, but I really encourage you to find your own version of this if you deal with a similar issue. Self compassion mindfulness particularly is the bomb dot com.

HOT TIP, MAKE A REFERENCE DOC

I had made a document with all the instructions from the clinic, the pre-op protocols, and links to the different music and audios I wanted my boyfriend to pick from.

NURSE INTERACTIONS

The nurse wanted to get me out of the PACU ASAP and there was a power struggle about this with a literal doctor who said I should not be moved yet. She didn't offer but we did ask for lozenges, 7-Up and crackers. My tip is to bring your own lozenges and crackers or ask for these proactively.

We had some other issues with this nurse and it was essential that my boyfriend was there. At one point I cried from her approach and he decided it was best for me to move on when possible. In his perspective, I would recover faster away from her. He could see PTSD activation in the cards if things got worse. As it was, I never actually felt capital-A Activated and I am so proud of how I handled this, plus all the preparation and treatment that made it possible. You're looking at somebody who has PTSD related to loss of control in a health context, and got into a scenario where she didn't have control in a healthcare environment... and who was not triggered or even slowed down by the nervous system trying to mount a defense. I felt soft and capable. Instead of shutting down, I cried and felt the emotions.. I just feel like all of my past providers are giving me high fives right now. 😎 But, also, a pox upon that nurse!! Not a helpful practitioner.

ABOUT THAT PAIN

My boyfriend was also the one who underscored the pain I was obviously in. I was wishing the nurse could know that endometriosis patients have a very high pain tolerance! If I say I'm in pain, I'm in freaking pain. If I feel the pain is manageable, I will freaking manage it. In the end, though, I don't remember much about this—not even the pain. I mostly remember falling asleep and listening to the doctor advocate on my behalf. Having people with you is huge for transforming stressful experiences into resilience and I can feel that fact strongly when I think back on all this. ♥️

MOVING TO ANOTHER ROOM

They moved me to the next area.

They had said I could take some standard painkiller pills in the next location. But the next place said I could not! Much later, my boyfriend went to the hospital pharmacy to pick up my Ibuprofen and Tylenol. And, later in the day, I just started taking it on my own. If I had been at home, I would have started taking it, so why not start it at the hospital? Genuine question that I'm going to ask the clinic. I think they fell down on the job here.

But the space was so much more peaceful and the nurses were so much better.

This hospital practices active recovery, which means you get up and walk as soon as you can. Walking felt badass! Walking relieved the gas pains and I felt more normal, more in control.

I had pudding, had broth, tried to pee, failed, was given IV liquids, tried some more, eventually peed enough to be discharged.

EVENING

Somehow this all took hours. I was at the hospital for more than 12 hours in total. But the peaceful night time environment was actually a great way to wrap up the day! The nurses were relaxed and I was the only patient up and about. The way the team stood up for me about pain management and then the evening experience with the nurses covered over the bad experience with the one nurse. This again is part of the science of resilience, right? We can handle stress if we have caring others to be with us through it. The pre-op people had been joking around and the guy who wheeled my wheelchair to the valet was telling jokes, too My main memories leaving the hospital were of laughter, expert competence, and care.

I had a big pillow to put between my belly and the seat belt on the way home. The drive was uncomfortable but not terrible.

PEEING AT HOME

At home I tried to pee more. The issue was intense burning. Something related to the catheter and the fluids they put in you? And the bladder getting very restful from the anesthesia? I initially just sat with the bidet running over the area in question for 5 or 10 minutes to help my body remember how to use those functions. There are bottles for people who've done vaginal deliveries to ease pain when they pee, and if I didn't have a bidet I think I'd get one of those the next time. Bringing the phone in the bathroom and playing the sound of water was good too.

I didn't stress out about these functions. Staying cool and collected is the best thing I can do for my body. Everything was happening just as it should. The burning became less and less over the next day and was gone completely 24 hours later.

GAS PAIN

The gas pain was way worse than the surgery pain. The team had said I'd probably have experienced worse pain from the endometriosis, and that was totally true. But, ugh, the gas pain. I never needed the narcotics but I did alternate painkillers. Walking was huge! I got up a few times before bed and once during the night, with help. The day after surgery I was up once an hour for 5 or 10 minutes and I spent most of the day in the living room.

On day three or four I went outside for a short walk and continued with outdoor walks each day. It made such a difference. I loved feeling the sense of control of knowing I could do my best with breathing, and stand up and walk a bit, feel my body being a body, and this would make me feel better.

PHYSICAL RECOVERY

I took a shower the day after surgery and removed Band-Aids. Had some kind of skin reaction which honestly has looked worse than the actual surgery wounds. The surgeon suspected an allergy.

The bloating was much worse than endo bloat. Breathing well was hard because of the gas blocking my diaphragm, but I did my best. Blowing bubbles into a cup of water was helpful. I had my heating pad or heating pad stickers on my belly or shoulder nearly all the time. Heat was really helpful with the gas pain. I used a neti pot to clear out my nose—very helpful because you're not supposed to strain or push with your abdomen.

RANDOM WEIRD PHYSICAL THINGS

I really wanted to get these out on the internet because there was so little when I googled some of them. 😭

A few days in, I started leaking. Actually, gushing. I had to change my underwear a ton of times. Pads weren't really the thing because this was pure liquid. Period underwear wound up being the most helpful. At night, I put a puppy pad under my butt.

This wasn't pee! The surgeon said it was probably the fluid they'd used in the hysteroscopy... After googling it, I wonder whether it was also serous fluid that comes to the surface of a wound to help with healing. This wrapped up about a week after the surgery.

On day five I noticed one of my labia was huge!? It felt like somebody had hung a half full water balloon between my thighs. The surgeon said this was air and would go away. I used small, soft, round ice packs. If you'd like to see some disturbing photos, you can look up vulvar edema. Mine was far, far less than what you see though. If you experience this, let's talk about it?? I just want something in the algorithm for the next person who's freaking out.

EXERCISE

From day 2 I tried to use the wall for cat/cow stretches and push-ups. Mostly just laying my forearms on the wall and sliding them up as far as was comfortable while keeping strain off my belly. That felt amazing. On day 7, I did 20 minutes of extremely gentle floor work just to get my body remembering the concept of exercise. In week two I used a theraband for assisted stretching.

It was really helpful that I had good biceps and strong glutes and hamstrings going into this. Without my abs, those are the muscles that were called into play most often.

Somebody mentioned the pain and restriction are more like a strain from a sport from an intense surgical wound. This rang true for me. I have little tweaks and moments of internal pain, but nothing anywhere near endometriosis pain. I was able to get around and get the things I needed a lot of the time. But I did rely on my boyfriend for lifting things and setting up cozy nests around the house.

I stepped up the occasional stair, no staircases. On day 6 we took a drive and went shopping. On day 12 I drove to a cafe.

OUTCOME

The outcomes won't be felt until recovery is further along. But for now:

There are two parts of my body that I had pain in before the surgery where I still have pain now. I don't know whether it's the same issue, a result of something they did which is just healing up, or a sign that these weren't endometriosis. I'm going to bring it up at the post-op visit if it hasn't gotten better.

What I do know about the outcome is they saw and did exactly what they planned to. I didn't lose any organs that weren't planned and apparently they excised a lot of stuff! I got to see photos and hear about it from the surgeon. Felt extremely informed and in the loop. They confirmed stage IV endo and some of my organs are in different places now. That is, they're where they should have been all this time.

Here about 2 weeks out, I have more mobility but when I forget myself or don't rest, I feel new twinges high, low, and on both sides. It's telling me to pull back and stick to walking and light hobbies in the house.

I think I feel my pelvis existing in a new way. It's just in the past year that I learned to feel what those muscles are doing, and it feels like right now they have permission to relax! I'm so incredibly excited for the next stages on all of this and I can't wait for my post-op visit. Overall, it was an extremely positive experience and I'm very grateful I was able to have a skilled team do this surgery. 💓 Hoping against hope it's the long term relief that some people get from excision.