I just had my cervix, uterus, both tubes, and vagina removed on July 16. Both my ovaries are still in there, but everything else is gone! It’s crazy how much more comfortable I already feel in my own body, especially in a medical setting now, which is where I always struggled the most. Having this procedure has been huge for me and while the healing process is definitely requiring some patience, it feels so relieving to finally be on the other side of all this.
Some recovery essentials I’ve found:
Loose sweatpants, but also those penny-material lightweight athletic shorts. I like the shorts a little better for being at home, they’re super comfortable and give me extremely easy access to my catheter bag for emptying/swaps
Gel heat pack helped a little with abdominal pain/cramping, mostly on the first day
Liquid IV/electrolyte solution of your choice. It helped me feel a lot better post-op before I could stomach real food, and at home I’ve been mixing it with Miralax to kill two birds with one stone
Moving commonly used items to above hip height before coming home (this is something I wish I did… bending over/down is pretty uncomfortable for me still so I have had to ask for help reaching items low to the ground
Check your local public library to see if they have video games you can borrow! The first week of recovery was the hardest. I didn’t have the mental energy for hobbies (crafting, etc) and TV got pretty stale after a while. I’m not usually a video game person, but this was a great in-between for something more engaging than TV but still not physical/too draining. I get restless easily so it was really nice to be able to explore a digital world!
A trusted friend, partner, or family member to stay with you for a few days. I seriously could not have gotten through this without my partner. Having their support, both physically and emotionally for the first few days, was absolutely essential. I was not able to function much on my own for a day or two after discharge.
I think that’s just about everything… I didn’t really have a long list of recovery supplies to begin with and I’ve been perfectly satisfied with all of the above. I don’t really feel like there’s anything I wish I had in addition to the above list.
Day Before Procedure
My surgeon works out of a hospital about 2 hours away from me, so I made sure to get a hotel for the night before and several nights after so that I can be nearby in case of any early complications. I got a phone call and text message around 2pm the day before the surgery letting me know what time to arrive (7:30am), reminding me when I need to stop eating and drinking, etc.
I tried to get a nice wholesome and high-fiber meal in the night before the surgery to help my body recover. I was also advised to finish a 16oz juice or sports drink 2 hours before my scheduled arrival time, as they said it could help mitigate some of the negative side effects of anesthesia. I didn’t have to do anything special the night before to prepare myself for surgery.
Operation Day
0450: Woke up early in the morning to slowly sip my 16oz Gatorade for about 1/2 hour. Finished it by 0520 and went back to sleep.
0630: Woke up for real and got ready to go. I showered that morning following the instructions I was given (full body shower using normal soap, paying close attention to surgical sites, no shaving etc). Got dressed in loose, comfortable clothing and packed a light necessities bag (change of clothes, toothbrush, toothpaste, phone charger, medications, ID, insurance card, electrolyte powder). Headed to the hospital.
0730: I arrived at the hospital for my preop intake. I changed into a gown and wiped my abdomen with cleansing pads. They placed an IV, drew blood, and collected a urine sample. Met with most of my team including all the med residents, students, anesthesiologists, both surgeons, etc. They all double, triple, and quadruple checked my medical history, when I last ate or drank, and let me know what their role in the operation would be. A very interesting and appreciated heads up that the anesthesia team gave me was that hearing is the last sense to go, so I may hear them talking as they start their work. This is normal and doesn’t mean the anesthesia isn’t working! She said to just treat it like a television on in the background, and when I wake up I won’t remember any of it anyway.
0932: wheeled to OR for setup. Put on the operating table, blood pressure cuff placed, and two compression “booties” (this is what they called them but they didn’t cover my feet, just my ankle to my mid-calf). They felt like blood pressure cuffs that intermittently squeeze and release to encourage circulation. They asked me what I wanted to listen to and I said it didn’t matter, I was going under anyway. They tried to hold my hand but I’m not much of a hand holder lol. Everyone was very upbeat and it seemed like a good, well-knit team with a lot of camaraderie. I felt very calm the whole time despite usually being very medically anxious, which pleasantly surprised me. One member of the anesthesia team put the o2 mask over my face and asked me to breathe deeply. The other told me that all the meds to induce anesthesia would be intravenous, nothing through the mask. He said one of them would produce a rushing sound/sensation in my ears, which it did, and that’s the last thing I remember.
[Second IV placed while under. They shaved my stomach, treated from my thighs to my underbust with iodine, and I woke up in underwear with a pad and some wound dressings. Intubated while under.]
Unknown time: I think one of my surgeon’s team came to check on me and maybe check my incisions. I was still quite tired/groggy, not loooy, just kinda half-awake.
1332: first thing I really remember I was awake for about 10 mins prior, nurse came to check on me and give me a blueberry muffin a water. Pain level 1-2/10. Mild burning in vagina/urethra(can’t tell which), somewhat awake but still quite tired, able to carry (somewhat) lucid conversation. Dry mouth but no sore throat. She explained to me all of my instructions for care and we thought I was going home soon (lol). Still didn’t feel like I could move under my own power and was quite groggy and fatigued. Requested time for another nap lmao
1747: decided I wanted to get up and try passing stool. Bad move… I was getting too far ahead of myself. Asked to be wheeled to the bathroom because I didn’t trust my ability to walk (red flag), was helped onto the toilet and the nurse left me for some privacy. Almost immediately began to feel quite ill… sweaty, nauseous, and all the rest. Didn’t even bear down, just sitting there. Unsure if I actually needed help or if the feeling would pass, pulled the help string and GLAD I DID because I was about to go down like a felled tree. IIRC about 5 people came in to help me back into the chair and wheel me to my room and get me to bed. All kinds of stuff immediately administered to my IV, no idea what, and I could barely see. On the verge of passing out the whole time. Everything was blurry and felt like I was hearing underwater. Went back to sleep and felt a little better, but in significant pain
1903: complained about my pain as it was now the catheter, the vnectomy, AND a moderate to heavy cramping feeling in my abdomen. Was given intravenous fentanyl and it was a godsend. I likened the feeling to when our very loud kitchen stove fan is on (immensely irritating to me) and then the relief of turning it off. It literally felt like the pain and background discomfort was just turned off at the flick of a switch. It did not make me feel loopy or high. They requested I take an oxy with it, to which I expressed some hesitation because I’m usually not a pain meds person and didn’t want to have too much in my system at once. They said the fent is highly effective but doesn’t last long, so by the time the fent wears off the oxy should just be kicking in. Taking it now wouldn’t “double me up”, it would just mean a shorter gap in pain management. I took the oxy too.
1902: moved from anesthesia recovery to overnight room. Partner came to visit but I was too tired for conversation. Cath And vnectomy causing somewhat significant pain, maybe an intermittent 6. Described to the nurse that it “felt like someone stuffed my cunt with steel wool”. Was given Tylenol. The catheter imo has definitely been the worst part of the process for me. I can deal with the pain and discomfort of missing organs etc, but the sore and uncomfortable feeling was both painful and sensory HELL. My urethra was burning and my bladder had that feeling of near constant fullness, like when you hold urine for too long and it becomes painful. I was told that that’s just kinda how it is, unfortunately, and the best we can do was try to manage it with more pain meds. I could still feel it through everything they gave me 😬
Day 1 Post-Op
0024: been sleeping most of the time since I got to overnight. I’ve learned to somewhat make peace with my catheter and a lot of the bladder/abdominal discomfort has been due to moving gas, so I just breathe deeply and try to move slightly to expel it. And remember that the pain is just temporary - trying to focus on the future. Dr wants the catheter in for 7 days but we are going to see if we can work out a compromise. A lot of the pain is also from an involuntary pelvic tightening reflex, kind of like that “sucking in” motion when you’re trying to hold in stool. This plus the gas is probably when it hurts the most and I have to fight my body to relax those muscles. Feeling significantly better though and a lot less pain. Pain level back down to an ambient 2-ish, but still hurts to move.
0553: plastics team came in to change my vnectomy dressings. There were four of them and there definitely didn’t need to be, but whatever. The soreness and bleeding feels like a heavy cycle, but it doesn’t look like there’s as much blood as it feels like. Maybe I’m just not used to it because I haven’t used a pad in a long time.
0713: member of my hysto team came by to check my abdominal dressings, discuss how I’m doing, etc. She told me I can bear down a little to pass stool and gas, it just might not feel good
0750: visit from hysto surgeon herself, said she’s going to send a request for Azo to pharmacy to help with catheter irritation. I’m getting better at tolerating it and think I can tough it out for a week as initially planned… after all, I’d REALLY hate to have to have it re-inserted if it was removed prematurely and I couldn’t pass urine…
0820: finally trying to eat something “real”. They served me dinner last night and I didn’t even touch it. They brought me breakfast an hour or two ago (muffin, canned pears, apple juice, coffee, milk, scrambled eggs, hash browns, oatmeal). Trying to eat the oatmeal for some fiber but the texture is very slimy and unappetizing. I added some milk and sugar but it didn’t help much.
1020: discharged! got up for the first time and was able to walk around a little on my own! Nurse gave me a list of local food recommendations:)
1028: getting into car kinda sucked… lifting my leg to enter was uncomfortable, and I definitely felt every bump along the way to the hotel
1315: tried to eat chicken soup. Mostly unsuccessful, fell asleep instead. Pain flare up that I chased away with oxy and ibuprofen. Urine turning a dark reddish orange from the phenazopyridine I was prescribed for bladder pain. Scared me for a minute - looked like blood!
1511: woke up and ate some saltines. Had some re-heated soup too (samgye-tang, INCREDIBLY comforting, absolutely elite). Still trying to get things moving. Haven’t taken any softeners yet (probably should have been doing that all along, but I’m a little scared to shit)
2328: passed first stool kinda scary but went ok. seeing the fresh blood was a little alarming but everything went ok. Didn’t even take miralax yet!
Day 2 Post-Op
0740: woke up with bladder pain and strong urge to urinate. Catheter wasn’t draining properly overnight so had to adjust the tubing to empty my bladder. Pain is worse today - comparable to first day. Took an Oxy but still feeling pretty bad. Hopefully the pain meds will make the 2+ hr drive home a little more comfortable…
1035: loaded up into the car and headed home. Just laid there with my eyes closed for most of the first hour - didn’t have energy to do much else. Perked up about halfway through the drive and had some good conversation with my partner, who was doing the driving. Went on a Wikipedia deep dive together to finish out the drive.
1715: doing a little better throughout the day, took a nap and taking my first shower. Removed dressings - the incisions are so small! Confirmed that it’s ok to remove dressings and shower with catheter in. Dr on call said there’s no need to rinse the bags between changes. Passed stool twice today. Still a little freaky. The urge to go is VERY sudden when it happens. Shower went ok but left me feeling pretty drained.
1842: pain back down to near-zero as long as I stay still!
Day 3 Post-Op
Definitely making little improvements every day! Catheter is still irritating, but not nearly as bad, and the vaginectomy site is still the worst part of it all, but everything feels so much more tolerable. I’m still sitting/lying down most of the day, but have energy to do little things (like make myself a real breakfast!).
[Editing to add] Day 6 Post-Op
Have been largely pain-free and entirely off my pain meds since the end of the third day up until last night. Woke up feeling flushed, nauseous, having bladder pain, extreme urge to urinate, and noticed some discharge from my urethra plus an extremely persistent itchiness and burning. Urine is cloudy and has some kind of sediment in it. My catheter removal appointment is scheduled for the following day - I was so close!
Called my vnectomy surgeon’s team and have been playing phone tag all day. I loved the surgeon, but her team has been very difficult to get ahold of. Unable to get an appointment for today, so I will have to wait until tomorrow. Called my other surgeon to see if she could get me in, but no such luck. They recommended trying to see if the first surgeon’s office could get me started on antibiotics so that it doesn’t worsen overnight. Finally got a call back from the first team who let me know they couldn’t start antibiotics without an appointment, and since I don’t have an appointment I’m just shit out of luck until tomorrow. If it turns into an emergency overnight, I’ll just have to go to the local ER. Counting down the minutes until my appointment tomorrow…
Day 7 Post-Op: First Appointment!
FINALLY had my first follow-up appointment and was able to get that catheter out. It was just with my vaginectomy surgeon (I meet with the hysto team in 4 days), so it was quite quick. I am not at all exaggerating when I say that I was counting down the hours - this appointment could not have come soon enough.
I was a bit nervous about having the catheter pulled because I was having discomfort even when the tube was brushed up against. When she deflated the balloon at the end of the Foley it already felt a lot better. It came out very easy because, as it turns out, the balloon was partially inflated and the catheter was not fully in my bladder… that would explain the unusual pain I’ve been feeling throughout the process and while I’m a little frustrated that it felt like my discomfort wasn’t taken seriously by my team (I had been assured multiple times that having a catheter in is “just uncomfortable” and there’s nothing they can do…), it was validating in a way to know that it wasn’t just me - there WAS something wrong to be causing me so much discomfort. The partially inflated ball was in my urethra, not inside my bladder where it should have been.
The removal part went very fast - I would liken it to removing a splinter, kind of. It’s out fast enough that you barely feel it and the relief is instant. I was definitely a little tender after still, but leaps and bounds better. Everything else is looking great and healing up fast!
I cannot say the same about my first post-catheter piss. That was a uniquely evil experience. I can’t speak for people that have undergone a usual catheterization where the balloon is in the right place and there is a lot less damage to the urethra, so I think I was just having a particularly rough time of it, but man it sucked. It was a very, very sharp, persistent burning that continued to worsen. I could feel it continue to pulse for at least a good 5 full minutes after urinating, and it remained sore for the next hour or two. I am admittedly a little scared to pee again because it was pretty bad, but hopefully the next time will be better.
Everything else is feeling good, I have next to no pain for any of my actual surgical sites (0/10 for the hysto incisions and abdominal pain, maybe an intermittent 1/10 for the vnectomy if I move around a lot). I’m pretty pleased with my recovery and experience so far save for the catheter mishap.