u/WhyAmIevenHerewth

So I need to vent for a second because I just had the most insane experience at a dermatologist appointment and I’m just in shock

So for a bit of backstory:
I found out that I’m a BRCA1 carrier when I did genetic testing for my hEDS diagnosis last year.
I immediately started planning a mastectomy for this year and as I’ve had surgeries before that went poorly because of bad wound healing and other hEDS stuff, I wanted to get some EDS specialists to consult with me and my treating doctors / surgeons, to ensure the surgery goes as smoothly as possible.
I’m in Germany and we have a registry for EDS specialists, and I wanted to consult with a dermatologist regarding wound care and infection risk mitigation. So I found an EDS specialised dermatologist (the only one) which coincidentally is located in the same hospital that I’m gonna get surgery in.
I thought that was perfect! And I immediately contacted her and asked if she had the capacity to support and consult us in the planning process. She agreed and said I could come in for a dermatology consultation in her department. Great!
So I forwarded her contact to my doctor in the breast center, who then arranged an appointment there for me.
Which was today.

Alright so now to the crazy part.

I got in and encountered a doctor that was not the one I had contacted via email. She told me she would just do the initial intake and then consult with said doctor who would then come in towards the end of the consultation to ask some further questions and do some more examinations. So far so good.

So she starts with a 3 page questionnaire about my symptoms and stuff, asks me about how I first suspected hEDS what made me seek my diagnosis back then, etc.
So at some point I got a bit confused because the questions had nothing to do with the surgery and she reassured me that it was just something she had to fill out. She then started looking at my skin and abnormal scars and I thought finally.. but then she moved on to doing the Beighton test?

At this point I was just very confused but told myself it was just part of the intake process and the consultation would surely start once the EDS dermatologist came in.

She then left for a pretty long time to consult with the doctor and once they finally came back she barely acknowledged me, and went straight to examining me.
She just did the Beighton score test AGAIN while mumbling disapprovingly.
She randomly told me to take off my shirt, looked at my boobs for about 2.46 seconds before looking at me and saying: “so in my opinion, you do not have hEDS. You might qualify for HSD maybe but you definitely don’t have EDS, I’ve been doing this for 40 years.”
Excuse me, huh??

I was fucking speechless. Like who the fuck asked your opinion?? That’s not why I’m here??

My initial diagnosis was extensive and thorough. I sent in hundreds of files, and pretty much my whole medical history was looked at for the evaluation. I got 6 points in the Beighton score (like it matters) and was thoroughly examined.

I told her I was very confused. That I was here for a consultation for my surgery, not a second opinion. That’s what it said in the mail: conciliatory dermatology appointment.
She says, that’s the same thing. I ask about any advice for the surgery, anything that should be considered for avoiding keloid scars, etc.
she says the surgery should be done just like on any normal person - because I clearly don’t have hEDS. And it wouldn’t matter anyway because hEDS patients do not have skin problems. And then she just leaves.

I’m holding back tears at this point. I tell the assistant doctor that I did not want this. I did not ask for a second opinion and I do not want this to go into my file. She says her hands are tied and it’s what the doctor ordered so she has to put it into my file.

While I’m leaving she tells me:

Having hEDS sucks, it’s a really shitty disease and I should just be happy that I don’t have it!

She says to me, 24 years old, with my waking stick, degenerated disks, fucked up knees and chronic pain.
I wish I was joking.

What the actual fuck. Am I crazy? Did my autistic ass just misread this whole process and should have know this is what was going to happen? I feel so fucking betrayed and tricked.

Sorry for all the swearing I’m just still super pissed. If anyone knows what I can do now and has any advice I would appreciate it a lot.

I am 24 years old, diagnosed hEDS with terrible wound healing, and I will be getting a double mastectomy (aesthetic flat) by the end of this year, because of my BRCA1 mutation.

I already know it’s going to be a battle because of my bad immune system and wound healing - literally took me over 2 years for a normal ear piercing to heal.
As someone who enjoys video games, it kind of helps me to approach it like a “boss fight” I have to level and prepare for.

So I’m trying to gather whatever tips and advice on how to be as well prepared as possible for this surgery. Whether it’s supplements, nutrition, skin care to prevent excessive scarring - any and all advice is appreciated!!

I just want to be physically as healthy as possible to ensure all goes well.