I'm a MtF woman who also has ADHD, Autism, and severe PTSD including medical PTSD from multiple incidents of medical neglect, abuse and gaslighting. I've also been diagnosed with Hypermobile Ehlers-Danlos Syndrome.

The Background

One of the more serious incidents was with my bottom surgery. I had a surgeon who I thought was going to be empathetic and listen to me (they were a fellow trans woman) but they instead responded to me with aggression and anger when I asked some basic questions and left me without effective pain management for days, while also giving me a number of psychotropic medications and telling me I was lying about my pain and that the medication met standards and was enough for what I was experiencing because it worked for other patients. The implication being that if I had an opioid tolerance it was my own fault and I should just suffer through it.

As a result of that neglect and other issues of non-response to my care (including ignoring complaints about dilation being more painful than it should be, excessive inflammation, and several missing bits of anatomy and malformed tissues) I wound up with a very poor result that needed to be fixed. Clearly with a different surgeon.

The Next Chapter I found a revision surgeon that I felt was really good, empathetic, and caring. Unfortunately I seem to have been somewhat mistaken about this. Her PA has a background in Autism research, which I originally took to be a positive, but now I recognize to be a rather significant negative. When doing my pre-operative appointment she asked about any medical conditions I had and any medication interactions or intolerances that they needed to know about. I told them about my Autism, ADHD, and hEDS. I warned them about Fluroquinaclone antibiotics and I also mentioned that due to the Autism and hEDS I have a reduced response to opioid pain medications and I also don't respond well to oral opioids.

The PA Immediately said that "well we're doing home style care in the hospital and we can't send you home with an IV of morphine so you're just going to have to deal with it." I mentioned that it's a known issue for both autistic patients and people with EDS but she just got even more irritable and dismissive. After that and a little back and forth I completely dissociated from a PTSD flashback to my last experience.

The Aftermath Following that I worked with my therapist and had her talk to the surgical team to try and make the call as to if I should move forward. She eventually told me over email (after I told her not knowing was causing a colossal week long panic attack) that they weren't willing to make any adjustments to the surgical team to remove the PA. Apparently this PA is the only PA this surgeon has ever worked with or feels comfortable working with (the fact that it is a really bad decision to become so dependent on a single backup person in a high sensitivity profession being a separate issue...). They also said that due to "hospital policy" they had to use all traditional pain management methods and dosages until they failed. There was also a warning that they would refuse me as a patient if I gave any indication I was trying to "dictate my treatment" to them. This left me in a pretty big pit of despair.

Cut to Today I had therapy today and I found out a few more things: - The surgeon stated that there was no medical research indicating a correlation between opiate resistance and autism - The surgeon also stated the same for EDS & Chronic pain - They won't take into account how interactions, comorbidities, and symptoms of EDS will interact with the pain medications or other medication decisions because of "hospital policy" - I shouldn't ask what they would do if a patient reported an opioid allergy as it would be seen as aggressive, an attempt to dictate treatment, and hostile. - I shouldn't mention that the only things oral opioids do is destroy my ability to regulate my emotions, cause me to pass out, aggrivate my gastrointestinal issues, worsen my temperature dysregulation, and cause panic and anxiety. - I shouldn't mention that Benzodiazapenes also don't respond well with my Neurology, as they will interpret this as trying to dictate my treatment, and as an attack on their intelligence - The surgeon said she wasn't going to adjust my care in any way based on anything I claimed to be the case - Any mention of things that worked well in my past would likely also be seen as hostile or an attempt to dictate treatment - They said they would adjust the pain care based on feedback, but I wouldn't be allowed to make suggestions or reccommedations as to how to adjust the medication - I would need to meet with them to do damage control and I won't be able to present anything analytical or research based; it will be interpreted as hostile and trying to dictate my care. - I will need to be fully masked for my whole hospital stay and be perfectly polite and balanced no matter how much pain I'm in if I'm to avoid a repeat experience. - I probably won't have a better experience with any other surgeons so it really is a choice between this agony and permanently deformed genitals - I also apparently was too loud and abrasive when I got a call saying that my surgery was cancelled because insurance denied it and no appeals could be made (after being told that the surgeon was expecting this and the appeal would be made not 2 days before). Apparently I was supposed to be quiet, polite, and have perfect control of my volume in that situation? So they've been assuming and likely continue to assume that I'm a hostile and difficult patient.

I really am just broken at this point. I've got bad options after bad options and every doctor treats me the same way. No matter what the condition is or the situation when I describe what's happening and insist that what they're saying doesn't fit they get angry and treat me worse. When I ask for accommodation for my body and my health issues they deny that they could even cause those issues. I hate that everyone who gets into medical school has a narcissistic personality and can't handle the idea that they might not know everything about medicine or that sometimes patients require creativity and adaptation.

I'm just so tired and exhausted. Doctors judge people for trying to self-medicate and self-treat but then ignore us when we tell them what our problems are and whar hasn't worked before. I don't want to have to go through the same cycle of agony a hundred times over and still be left to suffer just as much.