So I wanted to just disclose some of the struggles I have had with my vaginoplasty, framing it subjectively as the information I wish I had been armed with before surgery, because I haven't done the work to account for how my experiences compare to others to know whether my experiences are worth generalizing or not.

Things I wish I knew

If I could write a letter to my pre-op self before surgery, here are some tips and information I would pass along:

Pads

I will need more pads than I realized, I packed maybe 30 - 40 overnight maxi pads because I figured for a single week that was a lot and other posts on Reddit and elsewhere mentioned that they didn't use many supplies - I needed more like 40 - 60 pads so I ended up buying a couple extra packs of 10 while at the hotel.

Redundant equipment

Having a second hand mirror would have been really useful - having a mirror dedicated to the toilet station would have been nice so I could leave the other mirror as dedicated to my dilation station; I needed a mirror at the toilet to help me evaluate bleeding, help me navigate cleaning better, to observe my urine stream and so on.

Inserting the douche nozzle

Treat the douche like the dilator: use lube and a mirror to guide the douche nozzle into the vaginal canal. I did some damage and had some bleeding and made wound separation worse by trying to just guide it into me by touch alone in the shower.

Hospital staff's ignorance can be harmful

The hospital staff did not seem aware of the restrictions that come with a vaginoplasty surgery, e.g. they were unaware that after a vaginoplasty you should not sit or apply pressure to the sutures, as a result nurses put me at 90 degrees to use the bedpan, which likely contributed to wound separation later.

You have to advocate for yourself more strongly than is comfortable, and you are on your own to come up with solutions to avoid these complications caused by the hospital's negligence or ignorance.

A floating nurse from another floor won't know anything about your surgery or its details, I was variously asked to sit on the bed, to sit on a bedpan, to sit on a toilet all when my wounds were vulnerable and susceptible to wound separation - and I did have wound dehiscence as a result of complying with the hospital staff, so I wish I had known I needed to be more prepared to push back: don't sit on the bedpan, lie flat or at a 30 degree angle and try to use it that way.

Once you are not on bed rest and able to get out of bed, don't sit on the bed to get up, find your own way even if it makes the nurses uncomfortable. I had a nurse demand I sit on the bed before standing, but instead I found rolling onto my right hip bone and dangling my legs partially of the bed and then propping my upper body up slowly while sliding out of the bed avoided putting pressure on my sutures was better. This made nurses very uncomfortable because they see someone sliding out of bed like that as a liability - but don't prioritize the comfort of the nurses, do what you need to do.

Don't pee on the toilet if it's painful and difficult, I forced myself to at great cost. The nurses need to know how much you have urinated after the catheter is removed, and you are under a deadline to pee sufficiently after the catheter has been removed. They demand you measure the urine by capturing it in a little plastic insert into the toilet they want you to sit on to pee.

After my experiences of complying with this which caused bruising, inflammation, and wound separation - I recommend instead advocating for yourself and taking seriously the requirement to not sit, and opt to pee while standing, e.g. in the shower. I wished I had refused to comply, I prioritized the nurses preferences for following procedure over my own well-being and now I am in a precarious situation with regards to my wound separation, which is worsening every day and seems to be working its way deeper from the frenulum into the canal's skin graft.

Gas

I wish I had known about the post-op gas.

Before surgery, I had a balanced healthy diet with lots of vegetables and fiber and no meat. after surgery, they fed me a diet primarily of red meat, refined carbs, and sugar (think: a piece of roast, mashed potatoes, and ice cream or a juice concentrate).

Antibiotics, a mandatory fiber-restricted diet, and a diet with lots of sugars resulted in huge imbalances in my gut bacteria and I had extremely painful gas esp. starting day 2.

I don't know how to emphasize how much suffering this caused me - not only was it extremely awkward, but the had no way to escape and was more painful than any of my surgery pain was at any point to date.

I was unable to pass gas because strict bed rest meant I was lying on my back all day (usually walking around helps patients recover from post-op gas), and because of the lack of fiber and the daily dose of laxatives, every time I tried to pass gas there was diarrhea that came with it, so I had to be put on a bedpan every time I needed to pass gas. This was an exhausting affair - lifting my body onto the bedpan and then holding myself on it for 30 - 60 minutes while I tried to convince my body to actually release the gas and diarrhea was a serious physical trial.

In one day, I had to use the bedpan over 5 times, and each time was painful and put immense pressure on my surgical site, risked contaminating my wound vac, and was extremely painful.

They expect anaesthesia and the opiates to make you constipated, so they compensate by feeding you laxatives and refusing to give you fiber to try to get you to have bowel movements ASAP.

Unfortunately I am an unusual pationt: I had no problem with bowel movements, the resumed immediately and had a bowel movement within 24 hours after my surgery, so constipation was not a side effect of anaesthesia I experienced.

Furthermore, I did not have much pain so I did not take any opiates after the surgery, so I was basically given lots of laxatives for little reason and had a predictably awful time.

So I wish I had known to:

• stop the laxatives earlier,
• demand gas-x (simethicone) from the beginning, and
• maybe don't go along with their food and change my diet (e.g. eating yogurt instead of ice cream and juice concentrates, and maybe incorporating some fiber against their orders, to balance the bowel movements and avoid constant diarrhea).

Sleep

When people tell you that you won't sleep in the hospital, it's not for the reasons I thought, like the hospital has lights or is noisy or is a foreign environment.

No, you're exhausted and every moment you close your eyes you will find yourself slipping into dreams - it's not hard at all to sleep in the hospital!

But you won't sleep anyway, because nurses will wake you up every few hours.

A week of being kept from sleeeping was basically like being tortured, and enduring this aspect of the hospital was maybe a little traumatizing - you are unable to heal or rest because you aren't permitted to sleep longer than 1 - 2 hours. Even when a nurse would say they would let you sleep from midnight to 4am, it was more common that the nurse schedules would get disrupted and they would come in early at 3am or come in late at 1am instead of midnight. Because my blood pressure was low (from laying in bed all day from strict bed rest), my nurses panicked and interrupted my sleep more frequently to check blood pressure more frequently on the first few nights.

Blood Pressure

I wish I had known my blood pressure will be shot from laying in bed immobile all day every day - as mentioned, the nurses will panic and fret over this, but the solution is simple - sit up when they take your blood pressure. Elevating suddenly "fixed" my blood pressure readings. The only downside is that this did apply some pressure to the sutures, since you aren't supposed to sit - but even just elevating to a 45 - 60 degree angle helps avoid the blood pressure reading too low, the pressure from the bedpan and toilet use were what caused complications, not sitting at 45 degrees - go based on how you feel, but some elevation can help the nurses leave you alone. I have never had problems with my blood pressure, and I had no symptoms or reasons to be concerned from the low blood pressure readings the nurses were getting, but the nurses think in terms of standarized procedures and are not necessarily the most rooted in reality (so it's more important to check my vitals every hour than to let me sleep, even though my blood pressure was not dangerously low and I had no symptoms and it was just from lying in bed). Basically: learn what the nurses need to check their boxes, and learn to juke those stats. Elevate to get the blood pressure reading normal, don't drink any water right before they take your temperature, etc.

Dilation education

When they teach you to dilate, do not let the doctor leave until you are able to lay eyes on your vaginal canal opening directly with a mirror and you have demonstrated you can successfully get the dilator into the canal on your own without guidance or help - you need to know exactly where to put that dilator so you can be confident when pushing it in, if you apply the pressure in the wrong place you will cause complications like wound separation. My doctor helped me successfully dilate the first time and it seemed so easy, I knew roughly where to go and how to do it, but when I went to dilate on my own a few hours later, pressing where I thought was the right place suddenly caused a lot of pain and blood to gush out. Long story short, I was probably pushing in the wrong place (too high up, to avoid the "W" stitches below that I was explictly told to avoid, but which ironically was right where the opening was), and it was hard to tell where the right place was because of the inflammation. I had to problem solve the inflammation by using ice to reduce the swelling (something at discharge I was told explicitly not to do, I have heard this undermines nerve growth?) and getting a doctor to come back and help me dilate. It took them over 24 hours to get a doctor to help me dilate, and in the meantime I attempted to dilate three times and each time caused more bleeding and physical trauma. When a doctor finally saw me, they ordered me not to dilate and packed some gauze where the bleeding was. This was one of the most distressing parts of the hospital stay, and admittedly I completely broke down from the experience. It all could have been avoided with a little more education up-front, and even after I got help with dilation again, the new doctor made the same pedagogical mistakes as the first one: they helped ease the dilator in and then I didn't know how to do it myself. They had to come back later after a second, failed dilation attempt on my own (under their supervision so they saw I was doing it all "right" but still not able to dilate), and finally I explicitly asked them to show me the vaginal canal so I knew exactly where to go. Once I laid eyes on it, I knew exactly where to go and it has been trivially easy to dilate since. Force them to show you, make sure you see it and grok it before they leave.

Things that went really well

Just to not focus too much on the negative, here were some things I wanted to highlight as going better than expected:

Lube Syringe

The lube syringe was an amazing idea - it was less messy to suck lube into a syringe and then insert it and deposit it than to try to awkwardly squeeze KY jelly onto the tip of the dilator, the syringe is a smaller diameter and was helpful for identifying the vaginal canal before committing the girth of the dilator to pressing in, and the lube on the tip of the dilator was worse at distributing the lube and lubricating the dilator than the lube deposited directly into the canal (more lube was lost from the tip when first inserting)

Support person

Having someone in the hospital with you is absolutely necessary - during strict bed rest you are extremely vulnerable. If you drop something on the floor, you cannot get it back. You might wait a while before a nurse is able to come help you. Having someone there to help is essential. I was very lucky to have someone there for me, but I'm thinking this was far more necessary than I ever realized. At one point the psychology of spending a week in strict bed rest really got to me - my bodily autonomy had shrunk to the confines of a single bed. You are at the mercy of the people around you to ensure you have water, food, and access to information or anything else you need (like sanitary wipes).

Dilation is easy!

If you ignore the extremely difficult experience of learning to dilate, once I knew how to dilate I was surprised by how easy it was - people describe dilation as painful, difficult, the worst part of the whole experience. Some people describe feeling like they spend all day on dilation: dilating itself, and preparing for it before, and cleaning up after ... but in the first week out of the hospital, I actually found dilation was easier, less painful, and took less time than I expected. I even enjoyed dilating, stragely (not like sexually, but the process of deeply relaxing my body and mind to get the dilator in me was a nice forced break in some sense, a guaranteed zen moment in my day).

Equipment lists

I can come back with more, but this is what I have for now.

Also, feel free to ask me anything!