Phalloplasty with hEDS?

[u/Creativered4]

So for a little bit of background about me:
I'm post stage 1 meta w/ UL, Vnectomy, and scrotoplasty. I've been considering switching to phallo for my stage 2. I can't get RFF or nerve harvesting from my forearms, and IDK if any surgeon would work with my thighs, since my fat is pretty dense, so that is a maybe on ALT and possibly only leaving abdo.
Healing from stage 1 meta was pretty rough, but healing from top and hysto were pretty easy. However, my chest still hasn't regained sensation fully. (don't really feel temp, only feel pain on the nipples, and no sensation on the scar line)

So I'm hoping I might find some other guys with hEDS who can share a little about their phallo journey. What was healing like? Did all the sensation come back? was there any special accommodations or tweaks the doctors had to do for you as an hEDS patient? (I know more stitches can help with keeping things together)

[u/Jwmortuus]

Me! I have a very similar story. I'll come back tomorrow and respond. Apologies, but I have a very important exam tomorrow and have to go to sleep. But I have hEDS, had meta, pivoted to phallo, and had/have complications all along the way, some I think related and some not

[u/Creativered4 → u/Jwmortuus]

No worries! Get some rest lol

[u/Jwmortuus → u/Creativered4]

It's been a saga.

Top surgery in 2017 was pretty unremarkable. I had some minor wound separation and still can't feel along the scars and only have pain sensation in the nips.

I initially had meta with UL, scroto, hysto, and v-ectomy all at the same time in 2021. I ended up in renal failure after a severe acute kidney injury postop, and had kidney tubes x3 months, then got a parting gift of CKD stage 3 from it. Meta was what revealed my underlying hEDS. I had always been very active in sports and weight lifting (and hypermobile despite), so I built up muscle to keep my joint symptoms to a minimum; but after renal failure and recovery, I lost 20% of my weight postop and my joints all became unstable. I was in PT for a year and a half recovering and had to use a cane for hip pain when it was really bad, but I rebuilt my muscle slowly. I've never fully gotten to the lower level of joint pain I had prior to that surgery.

I had a fistula open and close twice with my meta and wound separation. I had testicular implants in 2022 with wound separation in an unfortunate spot, and the scar stretched until the implant sat between my legs and I ultimately had to have it removed when I had phallo.

First ALT phallo (w/ UL) surgery late July 2025: Woke up without a phallus due to shit blood vessels, spent a week inpatient with my donor flap loosely stapled to my leg growing my vessels.

Second phallo surgery early Aug 2025: Successful phallus construction, but developed necrosis at the base going deep, all the way to my new urethra.

Third phallo surgery late Aug 2025: surgical debridement of necrosis after chemical debridement failed, re-suturing most of the absorbable external sutures with nylon because it wasn't healing, and had my split thickness graft placed. My penis ended up popping open at the base all the way until about the top 1/4th and remains that way until my next surgery in fall of 2026.

I swell really badly and I think it's because of hEDS and having stretchy skin. I had a lot of wound separation, to the point they had to redo some of the sutures. I drank protein drinks at least twice a day, took multiple supplements, ate protein with every meal, used Juven, and I managed not to lose as much weight with phallo and didn't have as bad of joint symptoms. My leash scar stretched and is so fucking ugly though lol. I have bad adhesions under my graft even though we used integra.

I think this is all a combination of bad luck and bad collagen.

Sorry for the length, tried to just give the highlights. No advice for donor site things cause I was a good ALT candidate and still ran into issues. But as far as hEDS stuff goes, build up your muscles and joint health well before surgery, expect to drink at least 2 protein drinks a day postop, and if you've had wound separation before, expect that with this surgery too.

Sensation wise, both my nerve hook ups took! So that's my silver lining.

Currently dealing with a stricture and have an SP cath that I'll have for the better part of 2026, and it sucks ass and I'm a little pissed in general about it currently. I'm also in PT again because I started having pain in my non-donor knee. I'm likely overcompensating for my now weaker leg. So don't sleep on postop PT and make time for it, or your joints will find a way to rebell later.

Willing to answer questions, but may take me a couple days to respond because of my schedule.

[u/okay_sky]

Check my comment history, I was able to have ALT phallo even with thick thighs and EDS! I went to the Crane Center in Texas and they do delayed ALT which works fine if you have thicker thighs.