u/nothingelse72

Posting images this time around because they are easier to understand than my rambling text posts 😂 most images are from today, all others are from my time in the hospital. I will also take a page from my friend’s book and separate sections and title them for clarity.

For backstory on my recovery from stage [tissue expander placement, neourethra prelamination, vnectomy], see my initial post on here.

I quite honestly may delete this post at some point because I don’t especially enjoy the idea of posting dick pics on public forums, regardless of whether any identifying features are shown, but for the time being I will share the visuals for anybody interested. If anybody is curious about the leg scar you may ask via direct message, I have very identifiable tattoos on my legs which I am not comfortable posting publicly.

IN HOSPITAL

Dr Gurjala informed me between surgery days that flap bloodflow was not looking good. Surgery notes describe perforator entering capsule rather than flap and other anatomical obstacles that contributed to this issue. UL was scrapped as a result which I was ok with, but he said he was worried about flap surviving at all. He made clear the potential outcomes [successful phallus creation, phallus creation that does not survive after a few days, no phallus creation] and that he would do his best to make things work.

Phallus creation was successful, but as a result of the poor bloodflow, pressure had built up in the phallus as the veins were not robust enough to return blood to the body. Lower seam of the phallus was left open to alleviate some of the pressure. Leech therapy was used for 72 hours to relieve pressure as well, which gave the weaker blood vessels an opportunity to strengthen enough to support the phallus themselves, which they did. I received 2 blood transfusions from the blood loss during that time. After leech therapy concluded, circulation has been great ever since.

Recovery in the hospital following that was very smooth and easy. I was able to walk fairly easily after slowly working up to it over the course of a few days. PT discharged me with a cane, which I used intermittently for about a week. The catheter that was placed was removed before I was discharged.

RETURN HOME

I had a small scare with excessive swelling in my hip/groin between the single scar and phallus when I first arrived home (I suspect from the exertion of taking the stairs to my apartment) which resolved within a few hours after icing. The first week was mostly sitting around, walking around my home for a little bit, sleeping, watching tv… my leg felt very irritated due to the external tissue expander (seems close) and the drain in my leg, which had been yanked on accidentally in the hospital and the stitch holding it in place was easily aggravated. Phallus wasn’t painful, used cloud dressings to prop it up, aquaphor or wet/dry dressings on leg and phallus on the unhealed parts.

Dermaclose and drain were removed a week after hospital discharge. The staples being removed greatly increased my ability to move around, and within a couple days I was up and about running errands and hanging out with friends. Range of motion has not completely returned in my donor leg, I feel tightness when I lift my knees to my chest and the incision has not completely healed so I am not rushing to stretch too far. Donor leg is also slightly weaker than other leg, I can handle stairs just fine but I can feel a difference in strength. There is no pain in my leg after staple removal. Wound healing on leg was extremely itchy after that, I slathered it in aquaphor which relieved the sensation somewhat.

Stitches on the phallus were removed today. They had also been itchy, and I had been using aquaphor on those as well. Itchiness is gone. I was told I could start dangling pretty early on, and haven’t been using the cloud dressings to prop for at least a few days now. I normally just lean the phallus against my leg and haven’t had any issues with that. I forgot to bring the questions I had written down so I was unable to remember them for this appointment, but I am planning to email them to my favorite nurse in the clinic to ask if she can get the questions answered and/or ask Dr Gurjala directly.

CURRENT SURGICAL OUTCOME/SATISFACTION WITH PHYSICAL ASPECT

I am beyond happy with how the phallus looks. I’m pleased with the size (although I am preparing for some shrinkage as swelling continues to go down, so I am trying not to get attached to those measurements) and despite the leech bite marks, I think it looks great. I felt a very strong connection to it instantly. I am sure this is entirely a mental thing, but when I touch it I can feel a dulled sensation pretty much everywhere, and can feel pressure throughout. I occasionally feel random buzzing or pinching feeling in the base as well, without physical stimulation. However, somebody else was touching me and I had my eyes closed, I highly doubt I would feel much of anything at all. It is just my brain telling me I /should/ feel those sensations when I am touching it. Which is still awesome, the visual of it and the mental map of my body matching what is physically there feels so relieving. Feeling the weight of it attached to my body feels… comforting? I struggle to find a word that expresses what I am trying to convey. It feels great.

The lack of glans and scrotum/testicles at this point and my dysphoria regarding those is for the most part overshadowed by the current relief I feel about my penis. I do dislike that the foreskin is still below the phallus, but I know it is going to be used in my next stage. And I cannot really see it unless I am actively trying to.

I had a very rocky road to get to this point in terms of recovery and complications during tissue expander, abandoning UL last minute, and the concern about flap loss in the first few days post-op, but it was all so worth it. I am so happy with how things have ended up and I hope to continue to be this pleased as I continue recovering.

I guess it’s time I do an update hahaha

I got my stage 1 done in 03/03 with dr Gurjala. Tissue expander was placed and the urethra was prelaminated. I honestly don’t remember a whole bunch from the beginning since I was taking a lot of medication, I noticed the tissue expander migrated down towards my knee a little which they were not worried about at all. It didn’t continue to migrate downwards, I think it was just the skin settling post-surgery and doesn’t concern me anymore.

For context, I live in the bay, so despite issues I am about to describe, I have been able to be closely attended to by the team and felt (and continue to feel) really well supported. Obviously I wish everything had been figured out quicker and I hadn’t been hospitalized or had to go to the ER at all, but I’ve still got a pretty positive outlook especially after being discharged the second time and figuring out what was up/how to deal with it.

About 2 weeks post surgery, mid May, just a few days after finishing my antibiotic course, I developed a high fever, was pretty delirious, had heart palpitations and could barely get a sentence out without losing my breath, and when talking to the on-call nurse I was urged to go to the emergency room. Turns out I was septic. I was in the ER for like 18 hours, during which dr Gurjala called me personally to see how I was doing and the nurses made arrangements for me to be transferred to a hospital close to their office. Most nurses (in and out of the ER, both visits) had no idea what to make of the tissue expander/catheter combo, every change of shift with a nurse I hadn’t seen before I had to explain what was going on. It’s a tissue expander, there’s a catheter in my leg, no I don’t pee out of it I pee normally, the whole time. First time in the ER was awful. I’m gonna get into all the gritty details: I was shitting crazy, like straight black slime, but all the er nurses were so focused on the surgery site(s, both expander and vaginectomy which had fluid collections shown on a CT scan that the er staff thought might be abscesses because they didn’t understand that a vaginectomy will have continued drainage while healing and show small fluid collections) that they didn’t even take note of that and so I didn’t get a stool sample taken or diagnosed with colitis until I had been inpatient for a couple days. I probably should’ve complained about it more repeatedly and loudly to the nurses during my visit but I was disoriented and exhausted enough that all I really had it in me to do was answer the questions they asked me.

Once admitted, I was visited daily by the surgical team to take pictures, check in on me, all that. It was annoying to be in there and I couldn’t wait to get out, but my white blood cell count dropped really quickly in response to IV antibiotics so I was let out in just 3 days and sent home with oral antibiotics. First visit was no sweat really, it sounds way scarier than it actually felt it was mostly just an annoyance to try to explain what was going on with the surgical sites every day to somebody new while I wasn’t able to think very clearly.

I was given a 2 week course of oral antibiotics and felt pretty good while I was on them. Since I live in the area, I go to the office in person weekly for the tissue expansion instead of doing it myself. They didn’t do any fills while there was redness in my leg in case the infection might spread to the expander which would’ve been a WAY bigger deal than just the UL site, but dr Gurjala checked on the redness and everything himself and discussed possible causes. We agreed to do a fill once the redness went down more and just keep an eye on everything for then. I completed the oral antibiotics I was sent home with, but within a few days the redness about the UL site began to flare up.

I ended up getting I think one fill done before I was hospitalized again, around April 6th— I had similar although MUCH milder symptoms, but the on call nurse again urged me to go to the ER. This time, I took an uber to the hospital I was transferred/admitted to the first time. The surgical team called the hospital ER beforehand to notify them that I was coming and I was in the ER for I think under 2 hours before being admitted. It was way more pleasant, and I was put on IV antibiotics again. This time, I was kept for I think 4 or 5 days which took more of a toll, emotionally speaking. Watched a lot of cartoons and TLC. Again, every single day somebody from the surgical team came to check in on me in the hospital and I felt well attended to by the team. I flushed the catheter myself both visits just because I felt it was easier than having the hospital nurses who barely knew what they were looking at doing it. The hospital staff provided me with the materials I asked for and I would just go to the shower and flush it twice a day.

When I was released from the hospital the second time, I took Bart home since the station was only a block away from the hospital. I planned to pick up the oral antibiotics they ordered me on the walk to my apartment, but when I arrived they weren’t ready and told me it would take around 20 minutes for them to be ready so I walked home to eat something (~5-10 min walk). Once I got home, I was super tired. It took me around 2 hours to get the strength up to walk back to the pharmacy. In the pharmacy, I couldn’t stand up for too long in line and had to sit in the waiting chairs. On the walk back home, I had to sit down for around 10 minutes partway there.

Once I got home after that, fever shot up, symptoms instantly started coming back, I felt like shit, and I sort of went into hysterics because I was so upset about the possibility of going back to the hospital for a THIRD time after being home not even 6 hours. I was lucky enough to have a friend that lives a few minutes away and he came to watch me and make sure I didn’t get too delirious until my mom(happens to be a doctor) showed up to stay with and take care of me for a few days. The on call nurse said it was okay for me to stay home so long as my mom was there and my fever didn’t bounce back up, and my next appointment at their office was just a day or two away so I took the oral antibiotics I finally picked up and waited until the in-office visit.

At that visit, they took cultures from the UL site (hospital only took blood cultures both times, which grew nothing) and they swapped the catheter in case I was allergic to silicone. They called me with culture results a couple days later and prescribed me specialized antibiotics.

After I finished that course of antibiotics, I resumed fills during the weekly visits I was having. I’d gotten pretty far behind because they weren’t doing any fills while there was active infection. I noticed that during flushing of the catheter, there were small pockets that filled with the fluid and bulged through the skin. During the visits, dr Gurjala lanced those spots so that pressure would not build up or be painful during flushes. It seems like the mucosal skin graft hadn’t taken in a couple spots which created pockets that would fill with fluid and become inflamed, and dr Gurjala assured me that during stage 2 they would go in to repair the holes if they didn’t close by themselves before then. Until then they would keep a close eye on them.

For the past month or so, I’ve been able to do fills as normal with the nurse during the weekly visits and dr Gurjala has come to check on the site in person for multiple visits.

After lancing the cavities to allow for drainage, the redness which had been present essentially since my stage 1 has finally gone down really significantly and is almost gone. I haven’t had any fevers or other symptoms of infection for around a month. Being in and out of the hospital for over a month definitely took a lot out of me and I gained like 5-10 lbs from being so inactive and having a horrible diet of straight sweets, but I’m able to do mild exercise and have been doing a lot better. I honestly don’t feel that my energy has completely returned or else this post would have much better grammar, but I’m able to do day to day activities to take care of myself like cleaning, cooking for myself, driving my car, and going on longer walks (~1-2 miles flat). I live alone and have only needed a caretaker for a few days to a week after each hospitalization, including staying overnight post-surgery.

I have sort of had a rough go of things post surgery but since I do live in the Bay Area, the team has been able to respond to my issues swiftly and the on-call nurses have been responsive even in the middle of the night when I’ve needed it. I chose to both take the full period of stages 1-2 off of work instead of going back between the stages, and to go into the office weekly for my fills, so I’ve gotten plenty of time to recover and plenty of attention for the issues I’ve faced. I don’t regret choosing SSP, UL, or dr Gurjala, despite the complications I’ve experienced so far. I definitely don’t think it logistically would’ve been possible to get the level of care that I needed if I wasn’t local, so I’m really glad I chose a surgeon close to me and I can imagine somebody going through similar complications could feel pretty scared if they weren’t close enough to be fully attended to, because I am close by and there were still moments when I was really scared. My primary concern was minimal scarring/aesthetics over anything else, and although I haven’t had my phallus creation yet (scheduled for early July) I’m pretty hopeful for the future. We will see how things continue on :)

Some things I have to say about the method of SSP/UL overall is that you have to be careful of your leg— I ran into a table corner and got a bruise and they were VERY concerned about possible punctures or abrasions to the expander itself. Flushing the catheter twice daily is fine and doable, but changing the tape every time on the dressings really irritated my skin and silicone tape is too expensive to be a viable option for every time I redress it. I’ve used plastic medical tape and ripped the strips to be half as thin which has lessened the adhesive-related irritation. The tissue expander fills are a little painful, especially at the beginning, but definitely not unbearable. I do have stretchy skin though. My vaginectomy site healed really well and was barely painful, and the tiny little bit of UL they did during the stage one is really cool. I think I have a tiny bit of wound separation where my natal urethra was so I dribble a little from that when I pee, but if I didn’t have that I would 100% be able to pee standing up at this point and that would’ve been awesome. They told me not to expect to be able to pee standing up at all during this stage but without that small fistula it would’ve been possible.

Anyways, this is very long and disorganized since I don’t have it in me to proofread it all even though I have a lot to say. Pic is from post-second hospitalization, pre-lancing of the hollow cavities (probably from around 2 weeks ago). I’m happy to answer questions or discuss with anybody else going through surgery with him, I’ve been in sporadic contact with a couple of the guys with the same surgeon who have been posting on here who I’m really appreciative towards because as corny as it sounds, it really helps to know that there’s somebody else who sort of understands what you’re going through that you can discuss things with. I don’t know how to end this but I’m not discouraged and I’m relieved to be doing better than I was in the first month post-surgery 😄