SRS and Ehlers-Danlos Syndrome

Sat Aug 8 23:20:29 2020 UTC

(15 comments)

I want to pursue SRS, but I have a collagen disorder (Ehlers-Danlos syndrome), and from what I've read it seems like we're at higher risk for complications and longer recovery times. My EDS isn't too severe right now, but it's been scary bad in the past so I want to be careful. I'm diagnosed with the hypermobile type, so my skin isn't super elastic, but my connective tissue is still loose and I scar abnormally. I've never had a major surgery before, so I'm not sure how my body will react.

Questions:

What's the best way to find a knowledgeable surgeon? Should I just try to schedule a lot of virtual consults and ask them? Do I contact them directly or try to go through my existing care team?
Do any of you have first-hand experience with this? I saw one previous post where someone mentioned it going poorly, but she posted from a throwaway account.
Are there variants of SRS that might be easier on my body? I've heard of zero-depth vaginoplasty, and I'm not that into penetration so I'd be open to it (I have a lot of anxiety about how my tissue will handle dilation.) But I don't know if most surgeons will offer/consider this.

Thanks!

u/supertucci Surgeon

Surgeon

Sun Aug 9 13:16:55 2020 UTC

(7 children)

Surgeon here! This is SUCH an interesting issue. 1)it appears that transgender patients seeking medical care have a much much much higher chance of having EDS than would be expected by the (generally) low rate of EDS in the general population. Much. This has only recently been understood and it’s too early to understand WHY this may be. 2)Because EDS is diagnosed “clinically” (there’s no reliable blood test or similar for it) many people who have successfully had surgery have had it, whether they knew they had it or not. 3)I polled our top surgeons and in just the last 2 years they are aware of “at least 6” patients who had EDS, who had successful surgery. 4) We would not hesitate to offer top or bottom surgery to an EDS patient. It’s possible EDS folks have slightly higher rates of postoperative bleeding (the stretchy tissue can allow even small oozing to keep bleeding instead of “tamponade” and stop) but it appears most do not have much higher complications. Patient and doctor, with a known EDS diagnosis, would simply have to understand there MAY be higher bleeding complications and watch closely for problems and react appropriately.

Hope this helps!

u/HiddenStill

Sun Aug 9 13:55:22 2020 UTC

(1 child)

Are there any special considerations someone with EDS should make when looking for a surgeon, choosing the kind of surgery they want, or for recovery?

I polled our top surgeons and in just the last 2 years they are aware of “at least 6” patients who had EDS

How many surgeons or patients would in that group?

Just in case anyone's wondering, I asked u/supertucci to comment on this post.

Sun Aug 9 17:52:30 2020 UTC

(0 children)

I think in all cases you should pick a surgeon with the most favorable mix of “close by geographically” and “experienced”.

In two years we performed 112 double-incision double mastectomy surgeries......

Sun Aug 9 17:30:14 2020 UTC

(4 children)

Thanks for answering! It's good to hear from a surgeon. Are the bleeding problems you mentioned the same thing as the wound dehiscence that the other poster mentioned? Do patients with EDS have to adjust their dilation schedules at all? Any issues like prolapse?

Sun Aug 9 17:42:37 2020 UTC

(3 children)

Ugh. So much we don’t know: 1)I have not personally seen would dehiscence but i can imagine it might happen 2)if anything dilation should be easier! 3)I just performed a vaginoplasty on an EDS patient. Surgery was..easier! Then they bled in the recovery room and I had to take her right back :( Now she’s fine....

u/Throwsawayfortacos

Mon Aug 10 22:31:18 2020 UTC

(2 children)

There are reliable tests to see what type of EDS you have unless it is hEDS since there are no known genetic markers for it.

Dilating WAS easier than what nurses told me it would be... at least until the dilator started to stress the skin around the entrance and sutures were just ripping through my labia, which then led to a flap being opened just under my vagina between my anus that was dilated into. Check my post history if you want to see how that went.

To /u/MadGenderScientist Please for the love of god move around as little as possible for like the first 2 weeks and have your surgeon reinforce your sutures in anyway they can. You may develop POTS (if you don’t already have it) from the surgical trauma and blood loss. You are going to want someone with you when you’re getting out of bed and moving around for a while in case you pass out or about to fall. I lost 20lb and needed help for 6 months after surgery. The deconditioning i experienced was awful and took me about 2yrs to get my strength back.

Mon Aug 10 22:39:11 2020 UTC

Oof, thanks for the tips. Glad you eventually got back to baseline.

I am especially worried about deconditioning, since I've been down that road before and needed mobility aids full-time. I do have POTS, but it's not bad enough to cause fainting spells, just occasional dizziness and constant weariness/spots in my eyes when getting up. I'm diagnosed hEDS btw. Are you cEDS? I wonder if your skin's natural stretchiness affected the ease of dilation, and caused the tear you experienced.

Mon Aug 10 23:53:39 2020 UTC

I was diagnosed with hEDS by an EDS specialist, currently waiting for genetic results to rule out vEDS and to check for all the other types. My skin isn’t particularly stretchy, it is extremely fragile, thin and basically transparent in areas though.

Sun Aug 9 00:04:44 2020 UTC

Try here

https://www.reddit.com/r/TransSurgeriesWiki/wiki/srs/introduction#wiki_ehlers-danlos_syndrome

Sun Aug 9 01:02:30 2020 UTC

Interesting. Unfortunately there's not much there about surgery other than links to the posts by u/throwsawayfortacos that I already found, but there was a discussion by a trans guy linked who said he had severe wound dehiscence and paper-like scars (which I also get.) So it seems like that's a big complication to watch out for.

I wish there were more info out there though..

u/pradlee

Sun Aug 9 03:02:38 2020 UTC

This comes up occasionally on r/ftm . I know sometimes with FTM top surgery people opt for as few incisions as possible, e.g. foregoing nipple grafts, to reduce risk of complications. Of course SRS is a different beast and I'm not aware of great places to reduce risk of complications/healing problems besides zero-depth, as you noted.

Sun Aug 9 03:11:09 2020 UTC

Yeah, from what I know of SRS it seems like it's.. heavy on the incisions. Plus all the complications that come from repurposing/reconstructing the skin. I have no idea how to make the decision about zero-depth.. it could be safer and save lots of pain, but maybe I'd like penetration if I could give it a try? So hard to predict. Anyway thanks for the links and input!

u/necrofuturism

Sun Aug 9 02:12:50 2020 UTC

I'm a trans dude and I have hypermobility as well. Despite having my top surgery over a year ago, my weird atrophic scars are still widening. Similarly, I also have those types of concerns about bottom surgery so you're definitely not alone.

Sun Aug 9 03:14:53 2020 UTC

Hugs. Did it take longer for you recover than for normal people? Do you have the stretchy skin phenotype? Do you get POTS and the other fun complications, or mostly just joint laxity?

Sun Aug 9 03:50:51 2020 UTC

So here's the thing. I don't have a formal diagnosis. I went through all the steps only to be told that they had recently changed the diagnostic requirements and my symptoms only match the previous requirements and do not fulfill the new ones. It was a v. frustrating appointment, and I intend to redo the process to see if anything's different/new/etc. because having a diagnosis would allow me to get more support with everything. Ugh.

With that out of the way, my recovery from top surgery was pretty standard. Lots of pillows, lots of snacks, and lots of hydration. My incisions just took forever to actually heal, and I had a stubborn spot that literally would not heal until I taped the hole closed. That particular spot was right by my dominant arm, and it makes sense to me because more activity = less chance for things to actually heal because everything's moving so much. My skin also really hates adhesives - especially medical adhesives - so that definitely didn't help me in recovery.

Wishing you the best of luck and the best of healing in your SRS process if + when you get things done <3

SRS and Ehlers-Danlos Syndrome

all 15 comments