Aspie facing a Hysterectomy. I really need some help to cope

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I found out that I was going to have a hysterectomy on June 12th.
Since then, I've been so afraid, that I've done just about everything wrong. I tried to read up on the procedure - but it made me feel faint.
I couldn't do it.
I should have stopped there, but the internet is a big place...and I decided if I couldn't read about what was going to happen, I would try to find personal stories.
I needed to know what to expect it to feel like.
It is SO important to me to know exactly what to expect.
I don't do well AT ALL with surprises. I get very upset.
So, I sat up all night, about a week ago, and I read horror stories from women who had had this done and now no longer wanted sex, no longer enjoyed it or had pain, or who were unable to orgasm.
That was the first night that I cried myself to sleep since I found out about the operation, but I've done so every night since, and in fact, the fear has gotten to be so debilitating that I'm laying in bed in the dark during the day, frightened out of my mind, unable to function.
I don't know anyone my own age (I just turned 40) in real life who has had this done, and with the death of my twin sister in January of 2011...I'm alone (female-wise).
I don't have anyone to talk to about this...because I don't really have any female friends, there was just her. She was all I ever needed.
She was the person I went to with everything.
I guess I'm here, I guess I'm writing because if I don't reach out to someone and ask for help now, I don't know what might happen.
I'm so frightened, that I've been hiding from everyone in my life...no one knows that I'm cowering in the dark all day.... I haven't told anyone.

I'm an Aspie (Aspergers Syndrome), so it's not that unusual for me to go silent for days or even weeks at a time IRL and not call anyone, so I doubt I've caused anyone any worry...but I'm starting to worry because I think I'm on the verge of a meltdown.

The operation itself wouldn't be so scary for me if it didn't have to happen in the hospital.
The hospital is my idea of hell...strangers and nose everywhere...it's so easy for me to lose it in such an environment.
So many things can go wrong.... like...if they don't give me enough of the versed, I have a paradox reaction and FLIP OUT...and I warn them that that is what the first doctor who operated on me told me to tell anyone else who ever prepared me for surgery, but sometimes, they still don't listen.
People often don't understand me when I try to talk to them...then they think my difficulty with communication means I am unable to think, which is not true at all.
They often seem to assume that I am mentally challenged, because I don't look at them when they talk to me, but if I do, I can't see the words they're saying.
This makes them feel like they can discount what I tell them...which is very frustrating.... or else they speak to me like I'm 6 years old.
I don't want to be treated like a child.
I want to participate in the decisions about my body and my health care and am fully capable of doing so...
I just need a chance to communicate.
It's so much easier to talk in writing.
It takes me a lot longer than it does neuro-typical people to get my ideas across if I have to speak...and the tics and the repeating my words...it gets in the way.
I'm not at all socialized. I stopped trying to be around other people YEARS ago and went on disability....so this is a VERY daunting prospect for me, having to go in the hospital and stay.
I just like to stay home, where it's quiet and I can have my routine.
Yet, I so want to be heard.
If I have to be there, I want to be listened to...and also, I need to know what is going to happen, what it will be like and feel like and what to expect.
I can deal with the answers, it's not knowing I can't deal with.
Well, not knowing, and pain. I have a very LOW pain threshold and a lot of medicines don't work well for me.
I'm so anxious over all of this.
Has anyone else out there had to deal with this?

I haven't had a hysterectomy, but I have had surgery, and I work in a hospital. When I first started clinicals in nursing school, the hospital environment super freaked me out, but I've learned a lot of tricks to dealing with doctors, nurses, anesthesiologists, etc.
1. Make an appt with your surgeon, and ask all of your questions. Legally, they can't go forward with the surgery until they have answered every question. Keep them concise. I'm guessing that most of the surgeons in my hospital have asperger's, too, and they don't deal well with long, emotional conversations.
2. If you feel safe enough, tell your surgeon, your anesthesiologist, and your nurses that you have asperger's, explain (again, concisely), what that means, how your brain processes information, your needs for routine, etc. Mention that, like many folks with asperger's, you communicate with some difficulty, but have a very high IQ. This might prevent some of the patronizing behavior, medical folks appreciate high IQ's. They will probably be happy to accomodate your needs to the degree that they are able. If they don't seem inclined to support you, mention something about CMS (medicaid and medicare regulatory agency) and the word "disability," and they'll probably change their tune quickly. Don't mention those things unless you have to, it's very scary and stressful for them.
3. Tell your surgeon about your reaction to versed, and make sure it is noted under allergies in your chart. Your reaction is not an allergy, but that is the most practical place to put it. Be assertive about this.
4. You might only meet your anesthesiologist an hour or two before your surgery. Reiterate the info about versed, make sure he/she understands this.
5. Coming out of anesthesia might be super stressful. Again, if everyone knows you have asperger's, they'll be mentally prepared to provide extra support.
6. When you get to your hospital room, request to keep the door closed at all times. Thanks to infectious disease protocols, almost everyone has a private room these days. That way you can keep out a lot of the non-stop beeping, buzzing, and whistling, as well as avoid being looked at by passerby. If you can keep the sensory overload under control, you'll do a lot better.
7. Find out the daily schedule from the nurse (meal-times, how often they get vital signs, when lab work might be drawn). They might be able to write this on the board for you. Again, if the nurses know you have asperger's, they'll be more accomodating, and hopefully very supportive. I find that most nurses are NT, but they are therefore usually pretty empathetic and compassionate. Be kind and polite to them, and they'll make the extra effort for you.
8. Make sure they all know about your pain tolerance issues, so they can order you appropriate medication. Make sure they know you do not take opiates, etc, at home, so they don't get the impression that you are drug-seeking
9. Try hard to find a supportive person/advocate to come with you.
10. Avoid the internet horror stories, those are usually worst-case scenarios. Typically, hysterectomies are uneventful if the ovaries are left intact. If they are removing your ovaries, you need to get extensive information from your doctor about what to expect, as that will affect you hormonally, emotionally, etc, although, again, typically it is not a horror story.

Hope this is helpful info!

I have read that people with Asperger's Syndrome may react different to anesthetics, they may tolerate higher or lower doses than normal. You might want to talk to the doctor about this before the procedure.

I read about a woman who had an operation were she was awake, she couldn't move or let them know she was aware of the pain, and they thought she was fully sedated. She had Aspergers.

I can't imagine what you must be going through, but it must be very hellish. That's a big surgery to have. Do they have online hysterectomy-patient forums for people who are going/have gone through the procedure who might be able to give you some comfort? I hope you can find something like that, since it's hard for you to be around people physically.

I hope everything ends up being somewhat tolerable, or at least not more traumatizing than you're preparing for. That kind of surgery can be a very hard thing to have to deal with even without having Asperger's, so your anxieties might start to increase and build on each other. I wish you some peace of mind during this very stressful and painful time.

I am in my early 50s, and had a DNC on Halloween of 2005 to fix a female bleeding problem. I don't know what anesthetic they used, but I reacted well to it. I came out of it in reasonable time, and was able to go stay with my parents for a couple of days to recuperate. When I first woke up I was a little woozy, physically wobbly, and very thirsty, but they had me stay lying down in the recovery room for a while and gave me plenty of water to sip. I was somewhat unsteady on my feet for a while after that, but recovered well. I was somewhat sore from the DNC, but it did cure the bleeding problem. Unfortunately, the doc called a week later with bad news. The biopsy on the stuff they cleaned out of me during the DNC indicated cancer. In early December 2005 I had a complete hysterectomy. I did do research ahead of time, and the docs all talked to me and answered the few questions I had left after my own research. I believe they used the same or a similar anesthetic for my hysterectomy, as they had used for the DNC, as my waking up reactions and sensations were somewhat similar. It did hurt more than the DNC, and for a longer time period afterwards, but it is a different type of procedure. The DNC goes through the vagina. The hysterectomy involves abdominal surgery. Besides internal sutures, they also used external staples on the abdomen, that they took out a week or two after I came out of the hospital. The staples were straight, not bent, like for stapling paper, so they came out easily, so that wasn't a problem. I was in the hospital for several days of recovery, as they have to use stronger pain meds at first. The one they used causes a sensation of all over itchyness, so they also have to give an anti itch med, too. I don't like to take too much medication, so I kept holding off asking for the anti pain and anti itch meds as much as possible. Massive constipation is another side effect of the pain med I was on. On my last day they gave me a laxative, as they won't release you from the hospital until you poop. I should have had it the night before, as it took a very long time to work. They gave me a prescription for a similar pain med--an opioid/Tylenol combo, to take at home for a while. Unfortunately, Tylenol has never done a thing for pain for me, so the pain med was useless for pain. It just made me really woozy, sleepy, and prone to staggering around. I eventually took myself off of it once I could stand the pain on my own. I stayed with my parents for a week or two while recovering. One of their bathrooms has a step in shower, so I was able to wash off there. My place only has a climb in tub/shower, and I wasn't able to manage that for a couple of weeks. The hospital pain med, and the one for home use gave me a massive, and dangerous case of constipation that lasted for months. I was able to go a little bit every day, but with great difficulty, and that only because I was eating and drinking stuff that usually gives me the runs, and I was also taking a stool softener and fiber.

I don't know about the effects of the procedure on sexual activity as I have always been a solitary person--never a BF or husband. As for hormone effects, and early menopause symptoms, I had none. According to my research fat people store up a lot of hormones in their fat, and sometimes aren't affected as much with menopause symptoms. I am very fat, and must have several lifetimes worth still stored up, so that may be why I didn't have any menopause symptoms after the surgery. I also ended up putting more weight on over the next few months after the surgery, but I have bad knees, so it was already hard for me to get around before that. While I was recuperating I got around even less, so I blimped out more. If your knees are well enough, I strongly suggest you don't stay too sedentary after the staples come out.

After the surgery they did a biopsy on the stuff they took out again. They said it was a bad type of cancer, but that they had caught it early. They discussed follow-up treatments, including internal and external radiation treatments, and eventually gave me three internal radiation treatments. For that they put a very tiny amount of radiation in a thing like a suppository. Then they inserted that in the vaginal canal for a little while, while I stayed there on the hospital cot. Then they took it out. They did this over several weeks, but not until I had healed enough from the surgery. Although it is somewhat uncomfortable, it was better than external radiation treatments would have been. You have to change your diet for a while, while undergoing external abdominal radiation treatments. You have to stop eating almost all healthy foods, which didn't make sense to me, and would have played havoc with my digestive system. I have IBS, so some of the things that were recommended would have been bad for me, and most of the things that they banned were healthy stuff I try to eat, at least some of the time. I would have been ill on the foods that one has to eat on the external radiation diet, so the internal treatments worked out better for me.

I have been cancer free for almost 6 1/2 years now. Generally, they say if you make it through 5 years you are cured.

I hope my input has been helpful.

If you feel you can't verbally communicate well then you could write down and give to hospital staff all important points that Pipilo mentioned in her post and what is on your own mind. But keep the writing as short as possible, because a book worth of text might make you look like crazy. And in writing start with stating that you have aspergers - to explain why you deliver the information in such unconventional way.

If you have a significant other then talk to him/her about the after surgery issues you read about. SO should know anyway and the talk should relieve your concerns. If you have no female friend then talk to some close male, it's not that bad option, men are probably not that fragile in that matter as movies show them to be.

Best wishes.. And you can do it!

If it helps, I have had a hysterectomy. I came through it just fine. There were things that I did to prepare beforehand, and there were things that I learned about post surgery that I am more than willing to pass on to you, if you want to pm me. I'm sincere about this, so do not hesitate to pm me. Or if you want to ask me questions in this thread, that is fine too!