metoidioplasty

i had metoidioplasty (here's the wikipedia link) in may of 2026 and i wanted to document the process a bit. mainly for myself (i tend to forget a lot of things) but also because i could've used more information, especially about healing and complications. so maybe this can be helpful or informative to some people, i don't know.

[obligatory disclaimer for that: everyones experiences, bodies and healing processes and timelines are different, so mine are just mine and not representative.]

• week 1
• week 2
• week 3
• week 4
• weeks 5, 6, 7 & 8
• week 9 and onward [current]
• supplies [wip]

week 1 (day -1 to 7)

day -1 - 1

• DAY -1: arrived at hospital. lots of paperwork and organizing and even more waiting. met my roommate.
• DAY 0: surgery day! wasn't allowed to eat or drink before the surgery as always. when i woke up i had apparently ripped out a needle from my hand (i do not remember doing that) and was just in a lot of pain.
• DAY 1: i was sleeping a lot and still in a lot of pain. also had bed rest

day 2

i was finally allowed/able to get up and grab my laptop, so now i can report live from the hospital.

i had surgery the day before yesterday and today is the first day i'm feeling more like a human. as far as i know everything went well and is healing like it's supposed to, but as always i'm in more pain than expexted (and/or the pain medication works worse than normal) so the first two days were just a lot of pain until they upped my meds. now it's pretty ok.

i don't want to go into details, but this is by far the roughest of the surgeries i had. which makes sense - there is a lot going on. i really hope this is the last surgery, and that i don't need corrections or something like that, but there is no way of knowing and i'm trying not to dwell on that. for now it's just resting, ignoring the pain and combating the boredom.

day 3 & 4

[i don't really remember. i think i was mostly resting? but i do recall that the higher pain med dosage worked, so i was in less pain at that point.]

day 5

i have severely underestimated the amount of sensory issues that come up with this surgery. everything is sticky and damp and itchy and holy hell, the smell is the fucking worst. i wasn't aware that apparently the bandages stay on for at least five days in a row! without changing them! it's awful! and because today is a sunday and tomorrow is a holiday, i have to wait until after that for them to finally take them off.

i'm so overstimulated. if they tell me i'll have to wait even longer than that, i'll break down crying. or screaming. or both. i still might.

deep breaths. through my mouth because i. hate. that. smell. sorry, i'm tense and in a bad mood.

besides this mess, it's mostly ok. pain is manageable at the moment, but they just lowered my pain meds so we'll see if it stays that way. mobility is still pretty low, but i can walk around for a few minutes - standing and sitting don't work nearly as well. my roommate is nice and i like his company, which is definitely a plus and yesterday i even got a visit from a friend! it was great to see them and have that feeling of familiarity and safety. that helped a lot and i appreciated it. also, they brought some snacks :)

i'm so looking forward to going home. it might be in two days, it might be later. i don't know and i don't like that uncertainty, but right now i'm trying to get through one day at a time.

day 6 & 7

• DAY 6: i started with four tubes, and as of today i'm down to two. finally. maybe one more will get removed while i'm here, or maybe i'll go home with these two still attached.
• DAY 7: my roommate got released today, but i still have to stay three more days (or like, 2 full ones and the next day i can go home). but hey, i'm finally free of the bandages and i got to see my result for the first time! also friend visited again :)

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week 2 (day 8 to 14)

day 8 - 10

• DAY 8: got a new roommate.
• DAY 9: overextended myself. i'm getting more mobile, but it's still not great. would do good to remember that.
• DAY 10: got released! they were surprisingly quick with all the paperwork. i was handed a big bag of medical supplies, a check up appointment in 2 weeks and sent on my way. the way home sucked. normally i like train rides, but i still can't sit very well, so it hurt a lot. plus i was feeling very weak and exhausted, but still had to move my luggage around. don't recommend traveling alone, via train and with all your luggage after a surgery. friends picked me up as soon as i was in berlin and helped me get home.

day 11

first full day alone. obviously i immediately overextended myself by going to the pharmacy and a store to pick up more supplies (i though i would have enough for at least the first week but nope). also i'm way more freaked out and paranoid than i expected. it's surprisingly scary to be the only one resposible for what is still a big and fresh wound and i don't even know what is considered normal or not. i just want everything to heal well because i don't think i could do another surgery right now (or in the close-ish future).

this is all very overwhelming. i hope it well get better in the next couple of days when i've had some time to get used to the new situation.

the surgery area is feeling weird, but i don't know if that's new or if i'm just now noticing it because my pain medication level is way lower than it was in the hospital. i was realeased on a friday and had to travel for hours, so when i got back my gp was already closed, so i have to manage with over the counter stuff until i can get a prescription for better stuff on monday.

day 12 - 14

• DAY 12: apparently evenings are when i get the most worried. also, it really really sucks when you can't sit due to surgery and can't stand for long because of pots. so it's just a lot of laying down, which brings back pain, boredom and nausea.
• DAY 13 & 14: it's not going well i think. i got an extremely unhelpful e-mail from my surgeon after i asked about my wound seperation. the answer basically boiled down to: "no, that's not normal, but oh well, there's nothing to do. i'll take a look during the control appointment." the control / check-up thing is in 10 days. which feels very very long when part of your body feels like it's literally falling apart.

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week 3 (day 15 to 21)

day 15

this morning i had a very unpleasant and slightly worrying surprise.

so i called some doctors and was scheduled for an appointment tomorrow! which is a big relief. i hope they know what's going on and can help.

day 16

well, this was a day. i went to the doctor and while i had to wait for over 2 hours and was in a lot of pain from sitting, i am very glad i went. turns out i have a "necrosis cave". that's bad. they did some wound-care and holy shit, that was one of the most uncomfortable things i've ever experienced. also painful, but the main sensation was something different that i currently don't know or want to describe further.

i also got my blood drawn so they can check for infection markers and if they are too high i will have to stay stationary. either way i have to go back tomorrow and we will see if it's "just" gonna be a daily trip (which would be bad for me energy- and fatigue-wise) or another hospital stay.

oh, and even when this is healed (which i think takes a while) i will need another surgery.

i am so exhausted, both physically and mentally. this is way more (in a bad way) than i was prepared or ready for.

day 17 - 21

kinda all went the same:

• wake up even before my already too early alarm clock, be way too tired and grumble frustratedly about the catheter-night-bag, because it never seems to drain as much as it should
• get ready, take pain killers, prepare my bag and my wheelchair
• take two busses to the hospital
• draw a waiting number and wait for somewhere between 15-60 min
• get called up just to be told that it's going to be a while until the special room is ready, so more 30-120 more minutes of waiting
• my wheelchair is the only thing i'm able to sit in for more than 10 min, but by that point the surgery site hurts despited that
• get called up for real this time, walk/roll through the station to a really scary looking room and get told to undress and sit in the ob-gyn chair
• doctor arrives, takes 1 white gauze and 3 green gauze strips out of the wound cave (if non of them have fallen out during the previous 24 hours), then flush/wash it, remove any visible dead tissue, clean the surrounding area and finally put new gauze back in
• throughout all that i'm trying not to cringe and jerk (you don't want to that when someone has metal instruments like 5-10 cm deep inside you and your open wound), so i'm just cursing quietly and when it's done everything is overly sensitive, feels uncomfortably full and tight and often there are stabs of pain
• the way home often takes longer because walking is slower and more painful (and my arms are too noodle-y to propell myself with/in my wheelchair)
• if i have time and energy, stop by a grocery or drug store to get some food or medical supplies
• get home and fall into bed

that process takes anywhere between 2 and 5 hours and the rest of the day i'm in my room, mostly laying down and trying to find something to do that doesn't require mobility, sitting or concentration. it kinda sucks.

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week 4 (day 22 to 28)

day 22

i don't like having a catheter and it's especially frustrating today. it's constantly getting clogged and can't drain properly. at the check-up this morning they said they might exchange it tomorrow, which sounds scary but is probably a good idea. the one i have isn't really meant to stay in very long and under normal circumstances mine would have been removed in two days.

day (23 -) 26

good news: don't have to go to the doctor daily anymore! bad news: gravity also applies to tamponade-gauze.

healing is going well, so the intervall between my doctor visits can be increased, which is good. the doctor was kinda ambitious tho, so they went from 24 hours to 5 days, and i don't quite know what to do. the gauze strips that were supposed to be (and stay) in the wound, fell out the very next day and i don't know if it's ok for the wound to be empty that long? well, i hope it's ok, because i wasn't able to reach them over the weekend to ask and because it's not an emergency, so i'm not going to the emergency room. that would feel silly.

the whole thing is stressful and exhausting but this is a really absurd problem. next appointment, i'll try to insist on getting an explanation and some guidelines on what to do. it would be great if i could do some basic woundcare myself. the tissue isn't actively dying anymore (hopefully this weekend won't change that) so i think that should be doable.

tomorrow is monday and even tho i have a scheduled appointment on tuesday, i think i'll try to call and ask. my "i don't want to annoy and bother people if it turs out to be fine" is still arguing with the "better be extra cautious with this wound" and i don't know which side will win.

day 27 - 28

• DAY 27: woke up wit some stabbing pain at the suprapubic catheter area, no idea why. didn't have to call the doctor and ask about the gauze falling out because they answered my e-mail and said it's fine. had a regular doctors appointment tho, but it was only to renew my "can't go to work due to medical reasons right now"-thing.
• DAY 28: appointment went well and apparently everything is ok. so yay, the longer intervall works, but i got some homework. from now on i'll have to clean the still living part of the new urethra by inserting a single-use catheter and pushing saline solution through it with a disproportionally big syringe. that should prevent it from growing shut or getting too narrow and i have to do that two times a day.

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weeks 5, 6, 7 & 8 (day 29 to 56)

we'll see how much new stuff there will be. i expect things to kinda stay the same for now, so i increased the time-windows for these.

• DAY 29: finding the correct tube angle for the rinsing/washing thing is surprisingly tricky. turns out it's kinda hard to see and i don't have a third hand with which i could hold a mirror.
• DAY 31: very unpleasant doctor visit. i have a small infection / inflammation that had to be cut open and squeezed out, which hurt a lot. and then i had to get my (suprapubic) catheter changed. i don't know why but tubes being put in or taken out of my body just makes me really queezy and lightheaded, so that wasn't great either.
• DAY 35: another experience i could've lived without is having a blocked catheter while your bladder feels like it's about to explode. that sucked and it hurt a lot more than i expected. i had to take one of my giant syringes and apply negative pressure to pull the clog out. but it worked. also had a doctor visit and the intervalls between them were increased again, so the next one is in 9 days. i'm glad everything is apparently healing well.
• DAY 40: the amount of medical supplies i currently use is wild to me (and also quite expensive after a while). like, every day i use 3 single-use catheters, 1 syringe(i'm supposed to use two but that's really adding up), ca. 100ml nacl 0.9%-solution, one gel thingy (again, supposed to use two), 3 gauze for tamponade and several others for cleaning, 2 of those big bandages as well as some povidone iodine ointment, tape and a shitton of disinfectant. plus every three days i have to get a new leg bag (the bed/night bag can be used for 2 weeks). additional to all that are several pads for wound-fluid and similarly unfun things.
• DAY 42: it's kinda remarkable how easy it is to get used to things. there is still a bit of bleeding but as long as it's not dripping, i don't care. same goes for pain (i'm still on pain medication, but that never erases all of it so there is always something). oh and i can still only sit on the ring cushion (and if the ground isn't soft like a bed or couch, i need another cusion underneath the ring one too).
• DAY 44: doctor appointment. still healing well (all things considered) and my next appointment is in two weeks. at that point i can probably start "bladder training", which sounds awful, but it's the start of the process of getting rid of the catheter, so that's good. still have to rinse, both the urethra and the wound cave, which has gotten way easier with practise btw.
• DAY 50: the catheter stopped working yesterday. no idea why or how, but it just isn't working anymore. i tried applying negative pressure and i tried pushing sterile saline solution through it - no change. of course i wrote an email to my doctor, but i haven't heard back, so i guess i'm gonna ignore the spk and just do my best to wash everything out.
• DAY 54: the spk still isn't working, but my approch seems to be ok. currently i'm rinsing the urethra once and the wound cave twice a day with 0.9% nacl-solution from the pharmacy. i also used that to wash out the wound after every batroom use, but that became really expensive and the wound seems fine, so i'm just using tap water now.

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week 9 and onward (day 57+)

the most chaotic and uncomfortable phase seems to be over (hopefully), so this'll be even less regular i think.

day 58 - no more tube

big day! i'm finally free of the catheter! there is no more tube coming out of my stomach and i'm so relieved. i know it was necessary but damn, that sucked.

also, i'm happy to report that i didn't ruin my healing process and it's still going well. the wound cave is significantly smaller than in the beginning and it should slowly go away on it's own. wound care procedure is staying the same but, that's the other big news, i don't constantly have to go to the hospital anymore!

i do have a couple of appointments scheduled tho: next appointment in this hospital is in november, i have an appointment with a different urologist in september (in the hope that i can go there long-term for aftercare and regular stuff), my control appointment with my surgeon is next week and i have yet another appointment with a different surgeon in february (trying to reschedule that so it's sooner) to hear their opinion on what to do next.

oh and apparently i have at least one fistula, but in comparison to everything else that doesn't seem too dramatic i guess? the doctor today was very blasé about it, so i guess i'll ask at the control appointment (i should make a list because i keep forgetting things i should probably ask my surgeon about).

so still a lot to do, but the most "active" phase seems to be over for now.

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supplies

these are just things that i personally found helpful. it's not medical advice (obviously).

for hospital

i was in the hospital until day 10 after the surgery. the length depends on, among other things, the exact surgery and used method, healing process, hospital and type of insurance. also, i live in germany and had my surgery here with statutory health insurance, so everything i'm talking about is in that context.

• if you take medications and/or supplements it's always good to have them with you. check/ask beforehand if any have to be stopped before the surgery and if they'll provide them when you're there. in my case they had everything on hand except my adhd medication.
• hygiene
  • baby wipes, lots of them. i'd recommend getting the most sensitive ones you can find.
  • for longer hair: dry shampoo.

for home

• pain meds
• general wound things: disinfectant,
• suprapubic catheter stuff : (if you have/get one. that depends on the hospital/surgeon and isn't always a fixed part of the procedure like it was for me.)
  • disinfectant that is explicitly(!) good for catheter sites
  • (urine) bags: i have a big one for nights (2 l capacity, these can be used for two weeks), and smaller ones (500 or 750 ml) that can be affixed to legs and have to be replaced after three days. for the leg bags there are also holder things like sleeves and straps.
  • valve: i don't like the bags and all the tubes so i wanted to have a valve as my main thing, which didn't work out due to the complications, but the few times i did use it, i thought it was very convenient.
  • big bandaid for putting over the spot where the catheter comes out of the skin
  • some bandage or other skin-friendly tape to fix the catheter in place. you don't want it to move and you don't want any pull on it, trust me.
  • just in case: some sterile big syringes to unclog the catheter. either through carefully applying negative pressure or by flushing it with sterile water or medical saline solution. of course it's best to talk to a doctor, but still good to have as an emergency solution.
• grabber tool to pick stuff up with, because bending over kinda sucks
• for the same reason: hand-free shoes (shoes that you can just step into and don't have to tie or anything)

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