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loadingluke · 5 years

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2 months post stage 1 update

I had first stage radial forearm flap phalloplasty with Dr Hans Goossen in Brisbane, Australia on the 1st of February 2019. I’ve decided to split this update into several parts to reflect the different areas of healing etc. if you have any questions or wish to clarify anything let me know.

Here is how I’m healing up now, 2 months post stage 1.

ARM

Healing

Since I’d say about 5 and a half weeks post op, my arm has been healing and changing very rapidly. Every time I see it, it looks completely different. I’d say that now at 2 months 95% of my arm is completely healed. I have 2 small scabs healing on the seam line which would combined be no larger than a 5 cent piece. I also have a larger scab on the corner of my graft that is pretty much hanging on by a thread. I’m just leaving it there for the time being, and I’ll let it fall off when it’s ready. I’ve got a little bit of a blister by the looks of it on the seam line too, but I’m also leaving that be.

At 8 weeks, I stopped bandaging my arm, and only used island dressings on the problematic bits. Before this, I was having my dressings changed biweekly, once at my GP and once at hand therapy. Dressings changed pretty frequently with my arm, but we played around with jellonet, silver dressings, some more absorbent non adhesive dressings and loooooots of gauze. It is definitely nice feeling not being all bandaged up as I was pretty sick of it after 2 months. I’m able to dress my arm myself now too, so I’m changing the island dressings every few days. I still need to keep it covered when I shower until it is all healed, but they predict it really won’t be too much longer.

Mobility

My arm mobility honestly has been a complete non issue. I was lucky in that I never had any loss of sensation or very much swelling. My hand in general has been minimally affected. I was allowed to be majority out of the splint at 6 weeks, and then began some physio on my arm. My hand therapist Nicola was pretty impressed with how my movement was looking, and so I didn’t have to see her at 7 weeks. I was given some exercises to do at home and was sent on my way.

At 6 weeks, my movement was looking like this:

Wrist flexion/extension:

Right (donor arm): 50/40 degrees

Left (for comparison): 75/55 degrees

Ulnar deviaton/Radial deviation:

R: 35/15

L: 35/20

Supination/pronation

R: 75/85

L: 75/90

Grip strength (not super accurate as I was told to go gentle and not push it too much)

R: 5kg

L: 30kg

I was pretty close to matching my left side by 6 weeks, which was a pleasant surprise as I had not done any exercises and my arm was still splinted up up until this point. By 8 weeks, I was completely matching my left dominant arm in all tests besides being 5 degrees off in wrist extension, and my grip strength was still a little weaker at 18kg. Since I am left side dominant and usually your grip strength and mobility is weaker on your non dominant arm, Nicola is pretty happy with my progress and how my movement is looking, and so now the only exercise I’m really needing to practice is to work on grip strength and stretch. I have an appointment next week to see where I’m going and to touch base, but once that is closer to about 25-30, I’ll not need to keep going back which is exciting.

Mobility was a factor I was very concerned about leading up to surgery. As someone who wants to go into the medical field and is considering practicing as a surgeon, my fine motor movement was definitely something I was scared to risk. I am by no means saying that that fear was unfounded, as I know many people who have not been unaffected, but I’m very happy with how I’ve healed up in this department and that it didn’t end up being affected long term. I’m still working on my strength in general, and as I’m still not back at the gym I’m not sure if I’m completely unaffected or if more strenuous situations may leave me limited. I’m just taking it as it comes, doing my exercises and hoping for the best.

Scar care

Now that most of my graft is healed, I am finally allowed to begin actively managing scar care. It’s really nice mentally to have some agency in a process that by in large is completely out of your control, so I’m definitely liking that responsibility if that makes any sense. It was super frustrating watching my arm heal and knowing there’s absolutely nothing I can do to help it along!

I have begun scar massaging, all over the healed bits of the graft. I’m using a vitamin e cream, and just massaging it for about 5 minutes every couple of hours. It’s a bit too early to tell if it’s made much of a difference just yet, besides the graft feeling a smidge softer in some areas.

I have some other lotions and potions that I’m keen to try out, but I want to wait until I’m completely healed up and all the scabs are gone before I do. I’ll let everyone know what I found to work best once I figure it out. Nicola suggested a silicon and sunscreen blend stick to rub on my arm, which has been super easy to apply and use compared to other silicon products I’ve used in the past. It’s a bit too early to say if it’s made much of a difference, and I still have to be careful with where I apply it, but having some SPF built in definitely eases my mind. Although it is autumn now and my arm is always covered, UV is a constant menace and I don’t really want my very sensitive graft skin to get sunburnt. Nicola is also looking to find somewhere to get a custom silicon sleeve fitted, and will update me on that process at my next appointment.

As for compression, I’m doing a bit of both. During the day, I’m using a pretty light sock so I can let the skin breathe a little. It’s been bandaged and under compression for the past 2 months, so I’m happy to let it live a little. I’d say I’m at about 60% compression (mainly overnight and with a tubigrip sleeve) and 40% freedom. For how I’m healing now, that’s what Nicola suggested and is happy with, so I’m not complaining.

Final thoughts Arm wise

Everything is going well, and I’m looking forward to being able to stop dressing it and just going gung ho into scar care. Patience is key though, and now that it’s so close it’s easy to see how much has changed in such little time. The human body is amazing.

I’m seeing Nicola, who is an OT at Melbourne Hand Rehab opposite the Alfred in South Yarra. I honestly can’t recommend them enough. It’s definitely been a learning experience for everyone as they have never treated phallo patients before, but the care and support they’ve given me has been great. They definitely are very patient focused which I’m super grateful for. I don’t get the feeling like they’re trying to squeeze money out of me which is often what I’ve felt at some physios/allied health practices in the past (not ECKO, they were great too). Nicola and Isabelle (another OT at MHR) have both been super helpful, and so willing to explore solutions to help benefit me and my healing.

I was very flustered and stressed coming back to Melbourne as I knew that I was going to be away from Goossen and EKCO, and literally anyone who has experience with phallo, and so I felt very vulnerable. If you’re in Melbourne I totally recommend them, especially now that they’ve got some experience with me and will have established connections to help organise sleeves etc.

My team at the Prahran Market Clinic, especially Dr Doyle and RN Dianne have also been super. Hats off to all of them for supporting me and being so willing to learn and set up a system that before me (to my knowledge) was nonexistent here. Hopefully this will mean it’s easier for those in Melbourne in the future.

PENIS

General healing

At 2 months, I’m pretty sure all of the swelling in this area is completely gone. All my stitches are dissolved and out, and have been for a while. Redness and irritation are all completely gone. The end of my neourethra (which is located left side under the phallus) healed superbly and Goose is super happy with it. I am pretty sure I’m completely healed in this department in general.

I haven’t experienced a change in length, but I’ve had a slight reduction (maybe half a cm?) in girth as the swelling went down. I haven’t had any tightness in the underside scar, but I will start to massage it along with my arm to keep the scar loose to prevent any issues. I have no issues wearing underwear, and I prefer pouch undies from an American company called seperatec. I find they keep me the most supported whilst at the same time not squishing it. When I’m wearing pants I get pretty uncomfortable if they’re tight in the crotch area, and occasionally after a long time it’ll feel kinda sore, but manageable. Over time this has gotten much better, so I’m definitely not feeling super restricted. I was never a super skinny jeans sorta guy anyway so I’m not having too many issues. I defs look more forward to coming home to take my pants off though 😂

The hole

I’ve mentioned previously that I had a little hole that formed on the underside of my phallus at about 3 weeks post op due to some small haematoma/seroma. Well, it’s been a wild ride, but it is FINALLY closed up. Like my arm, this was changing pretty frequently and honestly half the time I had no idea what was happening. It looked like hypergranulated tissue for about a week, then it started swelling quite a bit and there seemed to be a buildup of fluid underneath that eventually just all came out. After, it looked a little like a fistula, and to this day I still have no idea if it was or not as it was hard to tell. After this it healed over again, popped (?) again, and then looked like an open blister. It was really strange and I didn’t really know what to do. Goossen said he was happy to wait and see how it was looking at my post op. I was just changing dressings every day to keep it dry, updating Goossen with its progress, and using saline to clean it every few days. It was taking weeks to look better, then one day last week I looked down and it was gone? Real weird.

The wound is healed, but there is still quite a larger incision due to it stretching, which aesthetically I’m not super happy with. I may look into a revision on that scar line during stage 2 or 3, but it’s not super pressing.

Urethra

The urethra is healing fine. I have begun flushing it every so often, as a bit of gunk builds up over time and that comes out the tip of my penis. It’s not an infection, and is totally normal (just a buildup of dead cells and other debris) but until my urethra is hooked up, I can’t really get rid of it without flushing it. I use a little syringe and just use a little bit of warm water every few days (mainly when I’m leaking quite a bit) and squeeze that in the tip of me penis so that it flushes it out. The water comes out of the constructed end of the urethra. This is all completely seperate from my natal urethra, which hasn’t been altered at all yet. I try to limit flushing as I don’t want to irritate the urethra or anything when I don’t need to. I’ve noticed the leaking increases after wearing tight pants, being hot and sweaty down there and standing for a long time. Usually it doesn’t drip out or anything though, and isn’t a huge deal.

I do have some hair that seems to be in my urethra. Maybe one or two that I just pluck out the end. They aren’t obstructing the urethra, and everything is still nice and clear, so I’m not super stressed about it or anything, nor is Goossen concerned.

Sensation

The exciting one! Definitely wasn’t expecting it, but I started getting a little bit of sensation on the phallus at 7 weeks post op. It is VERY patchy, and it definitely doesn’t feel good yet. It’s only in one very particular spot on the left side of my phallus, near the base. When I touch there, I feel a shock like feeling in my natal genitalia. It’s almost like a referred feeling, so I don’t really feel it directly on my phallus, but I also kind of do a little. It’s a pretty hard feeling to expain, but it felt a little like my nipple sensation after top surgery. Since then, I occasionally feel spontaneous shock like pains randomly in my penis and original junk. I’m starting to feel a little bit of something along the scar on the underside of the penis too. It’s not much, but I’m happy it’s something! I definitely wasn’t expecting anything until I was a lot further down the track. I’m using vibration to try to stimulate the nerves, and I find that I feel the sensation strongly when it is from that compared to just touching. I don’t know how much that will help or anything, but talking to friends and some anecdotal accounts from others have been promising so I might as well try it out.

Hair

I had laser hair removal pre op on my donor arm, and that did work quite well, however I did have quite a bit of hair grow back post op. This was expected as laser is not permanent, and often surgery and increased blood flow can stimulate this to grow back more than normal. It’s pretty frustrating as it does feel like I totally wasted my money, but compared to my left arm it is definitely a lot thinner and more sparse, just not *hairless*. Because of this, I’ve started looking into getting some electrolysis post op as soon as I can before I start getting more sensation. I’ve got my first appointment on Thursday, and will update with how it goes.

If you have the time and funds, I’d suggest starting hair removal as soon as you can. I definitely didn’t start early enough (I was able to have surgery 9 months earlier than I was planning for, if I'd known I would have started at least 6 months earlier than I did) And if I had the time and money I would have tried to get more in, and probably would have opted for electrolysis. Laser does work, but is definitely not as effective as electrolysis and is not permanent. Make sure you’re managing expectations as it can take a long time to see long term results, and can’t be rushed. Not looking forward to whipping my dick out for hours on end, but for me it’s worth it to not have to worry about unwanted hair.

MISC

Other Incisions

My incisions are healing nicely. The ones on the inside of my thighs are still pretty thin, and are healing nicely. The scar on my abdomen is also healing well. I’m keeping a little fixomull on it to help reduce tension and to help keep it thin. I’m happy with how it’s looking. I’m still a little shocked by how thin they all are. Goossen is an artist.

Butt Incisions are also all good. I’m keeping fixomull on them for the time being, and changing that every 1-2 weeks depending on how well it sticks. Like on my abdomen one, it’s just to relieve tension and to help the scar heal nicely. Having the fixomull really isn’t a huge deal, and so I’m gonna continue to do so until I run out of fixomull (which will be a while as I have a very long roll lol). I don’t have any issues sitting, though I don’t like sitting on hard surfaces for an extended period of time as that can still cause some discomfort. Sitting on anything with a little cushion is a non issue at this point which is good. I’ve got full range of motion and I’m able to squat and move as much as like.

Work

I started back at work at 6.5 weeks post op. I work as a pharmacy assistant at chemist warehouse, so it’s a lot of walking around, stock take and customer service. I wanted to give myself at least 6 weeks so I wouldn’t have to rush, but I probably could have gone back earlier. I’m glad I had the time to relax and recover though.

The first few shifts were a little hard to manage, as I kept wanting to lift more and I wasn’t used to standing for that long without sitting down so it was pretty tiring. It got easier over time though, and I feel pretty much back to normal now. I’m still being careful as I don’t want to lift anything too heavy or to injure myself. I’m stealth at work, and I’ve had some customers/coworkers ask about why my arm is covered. I just say I had to have surgery and usually people leave it after that.

Appointment with Goossen

I had my 2 month post op yesterday in Brisbane. It was a little bit of a rushed morning as my flight was changed about 48 hours before the day of my appointment, from leaving at 11am to 1:10pm. My appointment at Greenslopes was booked in for 2:45, with no chance of pushing it back or rescheduling. After almost missing my flight (it had been changed a few times and I just misread the time it I guess, completely my bad) I landed at 2:25, and ubered to the hospital. I ended up arriving at about 3:05, and for once doctors running late worked to my benefit as I ended up arriving just in time!

Goossen has a look at everything and was super thrilled with how I was healing. He was really impressed with how my arm was looking. He said it looks like everything is healing ahead of schedule, and has healed really well. We confirmed my stage 2 date for the 1st of August which is exciting! I’m seeing him again at the end of June as a final pre op just to make sure everything is all good. Exciting times! Only 4 months away 🥳🥳

Anyway, that’s it for now. Again if you have any questions leave them down below 😊

#lukes phalloplasty #phalloplasty #rff #rff phallo #rff phalloplasty #bottom surgery #lower surgery #stage 1 #dr goossen #ftm #trans #trans man #trans guy #transgender

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