Undiagnosed and having an op

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Hi all, I'm sorry if this offends anyone who is diagnosed, but I believe it's going to be hard for me to get treatment in the way I need it. I need soooo much information (I'd seriously do the op myself if it was at all possible!), and I just feel like cattle being ferried in to have a veterinary op at the moment. How do I learn to trust someone to perform an operation under general anesthetic? I can't even trust someone to pair my socks.

Anyway, I find it sooooo hard to trust medical professionals, because of my experiences with them and the NHS (in the UK). The anger I have towards them nearly brings me to tears and leaves me almost mute when Im trying to deal with their idiocy. I am going for key-hole surgery on the 13th (after nearly 5 years of infertility) and I had my pre-op assessment about a month ago, (including mrsa screening- pointlessly early or what?!).

I have never met my surgeon and have been getting horrible thoughts that he could be a pervert or anything. I know this may sound ridiculous but as a woman you cant help but be nervous about men who have some kind of power over you, who are about to touch you in a very vulnerable (asleep) situation! The amount of times a doctor has made me feel like a "silly little girl" when i don't just trust everything they say, and ask reasonable questions instead, has coloured my view, and I think consultants are generally pretty awful, selfish, god-complex type of people.

But, I recently realised that how these people wrongly see and treat me (as a bit pathetic, easily fobbed off or naive) may be because of aspergers! The intelligent and knowledgable person isnt even visable for them to converse with- is that why they are so patronising towards me? I previously thought they were being idiots for not reading me properly, but now i realise I probably cause them a few problems too. For example, I dont think I feel pain in the same way to others, partly because i'm so used to being in discomfort. I have been faced with many annoyed docs when I've been unable to describe the "type" of pain I'm having, or exactly where the pain is (I feel the nerve paths, random pains etc and I often find it easier to explain what I think is CAUSING the pain, which organ, activity, time of month etc- but they are used to people getting it wrong i guess. Also, when I'm in massive pain I think I might look like im faking it because I can zone in and out of acting "normally" and carrying on a conversation. I do this so much in all stressful situations so painful ones are no different.

A few months ago I had injured my lungs by breathing in fumes. The waiting room had blue neon lights, horrible buzzing noises etc, and I couldnt breathe, so I sat as quietly and calmly as possible. The nurse said my heart trace was "all over the place" and told me to wait. An hour later, a doc checked my blood oxygen level and said that I needed oxygen, but both the doc and the nurse had been shocked that I had been acting so calmly and normally. Needless to say, my doc went off duty and after half an hour I had to go searching for a nurse and the oxygen he'd prescribed. I asked very nicely, but they still rolled their eyes then the new doc discharged me straight away without checking my oxy level again.

I once had an emergency appt at the doctor because I had abdominal pain so bad I thought i would actually die (I told her im used to abdo pains). I was bent double in her office and she blatently thought i was putting it on and was very rude. She sent me away and refused me a scan, despite my begging, and I sat terrified and in a lot of pain for 2 weeks afterwards, just thinking I was going to die, alone and unable to move. This probably got me to the point where I hate them all!

Does anyone have any ideas for how I should get my point across? should I make notes to stick on my bed to say what im allergic to? (They always seem to use latex gloves and think everyone is fine with ibuprofen). Should I explain that saying things like "dont worry, you'll be asleep and wont know whats happening" are pretty pointless, and I'd rather listen to a long list of medical words, real INFORMATION, and make my own decisions about what medication to accept etc. I also need them to write down what they found during the op, because I will not be able to take it in verbally, especially if I'm drowsy from the GA, and it would really upset me if its still unclear when I get home.

I wish I was naive and just fully trusted them, but last week at that hospital they performed a forced cesarean, which I think is TOTALLY barbaric, and nearby a man went in for a urinary procedure and the surgeon accidentally gave him a vasectomy! Im worried I'll wake up with an accidental hysterectomy. I will be very surprised if it goes to plan :/.

Ugh, I totally agree.. Doctors see themselves as all knowing half gods who can decide over (the quality of your) life and death. And this comes from the whole idea of that a "bad" doctor doesn't know he's not a "good" doctor because, whether he does or doesn't do something, he sees what he does as "the best" and he doesn't know he's falling short to provide the care a "better" doctor would. It's not just about doing procedures, it's also about explaining why and how certain things need to be done or not to create a feeling of trust that he's actually doing "everything" to make you -feel- better, whether this means babying certain people or talking to them like a doctor colleague with others. Which is what half their profession is about if you ask me. I don't take any doctor serious who doesn't at least have a look, because being interested in advancing medical science is what the other half should be. With it advancing every day in all kinds of directions they should know that "a problem" is either "fixable now" or "not yet". It all comes down to statistics and money, so they should do their proper part and make me a statistic with as detailed information as possible. Don't just send me away or tell me nothing because -you- don't think there's any "real" need when I'm not stupid and there for a reason.

Anyway, to actually give some advice instead of ranting (ooh you got my hatred for this activated I'll be fuming for a couple of hours) ; Can't you find a female doctor? Maybe that would make you feel more comfortable about the vulnerable part of it, and my idea is that because they're in a "man's world", they are often more keen on "doing their best".
Plus, start seeing your doctors as the "market merchants" they are.. -you- are the one they are trying to peddle their goods too, so it's your full right to demand something that makes you happy. Ever since I learned to drop the "authoritative respect" for doctors (and policemen/politicians/etc/etc), (that I believe many people with autism tend to have very deeply build into them but also many NT's), I've found myself actually getting treated more equally. Lots of these jobs create(/attract?) people that naturally walk over "the weak" and only respond to "strength/authority". Let them know -you know- they are "just people doing a job" but then not in a mean or disrespectful way. (little tip: I imagine being a secret quality control person hired by "the boss" to go test the person in question to give myself a feeling of "authority". I mean, if someone is really terrible, in theory writing a "report" to their superior about my negative experience is a very legitimate action.)

It does not sound ridiculous. I tend to ask for female doctors in certain situations for similar reasons, and I try to avoid invasive procedures as much as possible. The less people are fiddling around with my body, the less harm they can do.

Ask for a female doctor and/or ask about the other staff who will be attending the operation. I'm not sure why you are getting this surgery, but since you mentioned infertility I assume that you are trying to get pregnant. If I were in your position, I would try to adopt. If you get pregnant, you will likely end up seeing more doctors, and you'll have this same problem with trust.

Thankyou both for your replies. Im not sure why I didnt reply before :/

@alienoraspie,
something had recommended to an aspie on here who was in a similar situation was to download and fill in their own 'hospital passport';
http://www.uhmb.nhs.uk/patients-and-vis ... -passport/
these are used by support staff/carers of those of us with learning disability [AKA intelectual disability] and other complex needs.
am not sure if they can be filled in by the person themselves as mine have always been filled in by the intelectual disability team but theyre worth a look-they will say things like what the individual can tolerate, what they cant tolerate,their needs and behaviors around hospital admission and procedures etc.

if theyre only aimed at the carer [woud have a look but dont have the bandwith being on a crappy one gig dongle] then just copy the style of it and make one,it will help hospital staff understand.

its also possible to get any special needs to be flagged up on the NHS database- every time am admitted into hospital-routine or emergency
all disabilities are flagged up on their system so they immediately know the labels its very helpful especialy in emergency cases and when are with carers [or friends/family in anyone elses situation] who do not fully understand self,its worth asking about even though are not diagnosed.

Thankyou so much for your help, and I really hope I can use one your advice in the future, but I am currently undiagnosed and, because I can appear "normal" to NTs (whatever that is haha), just quirky, I know I will find it extremely difficult to even get some of them to consider diagnosing me. It really will depend on who happens to be assessing me, and that will be in about 9-12 months time apparently. If they are on the spectrum, we will recognise each other I'm sure, but how likely is that? And even then, they have pressure on them to NOT diagnose and I will be an easy one to dismiss as there is nothing classic about the way i present. They will probably just say I have generalised anxiety disorder or some cop-out thing like that Also, they will probably think I want benefits, despite only ever claiming job-seekers for 3 months, when I was really struggling to find work and absolutely had to (when I discovered what autism REALLY was, it all made sense!)

I'd love to believe that they would put a flag on my notes, so it would come up automatically, but I have been formally diagnosed with at least 10 allergies, but the system still only says *allergic to penicillin*, because that was the earlist one they noticed. I had to tell them my allergies before my operation, but I dont have the best memory and forgot quite a few! I have also tried to tell them I am completely unable to answer my phone because of a phobia (if the procedure for a referral involves them ringing me to arrange the appointment for example), but they continually ignore this and Ive given up on trying to get counselling- they seem to not know what a letter is. I actually asked if my GP could put a *flag* on the screen to make sure people dont ignore it, but he said I had to go out to the front desk and tell the receptionist to do it! Why would you ask someone with mental health problems to shout them over the desk in front of the entire silent waiting room?!

Sorry to be so negative, I'm just so fed up with them all haha.

By the way, I think you are amazing in the way you challenge views of "LF" autism- you must really punch these ignorant people in the face (metaphorically) when they condescend you then they see what you are really capable of thinking/writing

Doctors can be very condescending. I've had a lot of bad experiences as well. Although I'm a guy so I can't relate to some understandable concerns you might have about being put under. I agree with Starkid, you could probably request a female doctor be present but I would have assumed that there would be more than one person there anyway, reducing the risk of anything untoward happening. As for allergies that should definitely be mentioned and put on your chart or something? Don't be afraid to ask these questions. Who cares if they look at you weird or think you're a difficult patient. You have a right to know you're in good hands.

Thankyou- I know Im too sensitive but its the thought rather than the act. Doesnt make sense really- I dont want to be the thought police! Women will understand how awful the feeling of being "ogled" at is, and to me the not-knowing is worse than the knowing.

I just get the impression there are 2 sorts of men who go into gynecology. The vast majority are professional, and have a genuine interest in the intricacies of cycles and baby-making etc, but there is this very very small minority who do it because they lack respect for the women, and a want to have power over them, and they can butcher them because they have no idea how it feels- women don't fight back enough about unnecessary suffering. Maybe its because of the d**khead who first said that childbirth is a punishment because of eve's sin... daring to share knowledge (the apple), against an authority figure's will to keep us ignorant. Thankfully the consultant was the former (even with the bit of god complex), but the anxiety came from not really knowing who was performing the op.