Hello there! I’m a 22 year old intersex person (but I do identify as female), who has had a lifetime of being diagnosed with various uncommon (well, some common) medical conditions. They are as follows:

  • Central Precocious Puberty
  • Growth Hormone Deficiency
  • Congenital Adrenal Hyperplasia 3 Beta HSD (this is the extremely rare one, and also what technically makes me intersex)
  • Hypothyroidism
  • Two very large thyroid tumors (which thankfully turned out to be benign) that resulted in the removal of my thyroid at age 15
  • Anti-Ovarian Antibodies
  • A Subarachnoid Cyst
  • A Pituitary Tumor
  • Severe Classical Ehlers-Danlos Syndrome
  • Gastroparesis
  • GERD
  • Gallstones (I had my gallbladder removed when I was 17)
  • An Unspecified Autoimmune Disorder (This has resulted in some fun illnesses, such as pneumonia about 20 times, pleurisy, and the West Nile Virus)

On top of these, I also got a couple of fun mental illnesses in the form of a Panic Disorder and Bipolar Type 2.

Feel free to ask me anything! I’m an open book.

Proof:

http://imgur.com/a/11QzD

(I had a hard time trying to figure out what would work as proof, so if this isn’t enough and there’s something specific you’d like instead, feel free to suggest it, and I'll do my best.)

EDIT: I just realized that I've been doing this for pretty much 14 hours straight, so unfortunately I must be off to bed. I will get to any questions that I missed as soon as I wake up tomorrow though! (whatever time of day that may be.)

In the mean time, if you're interested in learning more about certain things, here are a couple of great sites:

The Magic Foundation - an organization dedicated to helping families of children with endocrine growth disorders http://www.magicfoundation.org/www

The Interface Project - A great site filled with videos of people talking about their personal intersex experiences http://www.interfaceproject.org/

Comments: 530 • Responses: 85  • Date: 

samdr131 karma

How is your quality of life?

doct_quinn187 karma

It can be hard, but it's decent, mostly because I try to keep a really positive attitude about everything. Most of the problems I don't have to really think about too much on a daily basis, but the EDS causes really extreme chronic pain, and that is the killer. I had to drop out of college a few years ago due to all of the health issues, and have been living at home with my mother ever since. I figured out after a while that I definitely can't hold down any sort of real job, so I've been working on getting disability for the past few months. Once that is finally approved though, my quality of life will definitely skyrocket.

klukins57 karma

Join us over at r/ehlersdanlos. We offer loads of support and information. Also it's great resource for those looking for more information.

doct_quinn48 karma

I've actually been subscribed to over there for a while, I've just never gotten around to posting. I'll start trying to be more active, though!

h413y27 karma

R/chronic pain is super cool too :)

doct_quinn29 karma

Didn't know about that before! Meet your newest subscriber.

samdr20 karma

That sucks. What do you want to do with your life?

doct_quinn65 karma

My dream is to become a comedian, or at least a comedy writer. I would absolutely love to work somewhere like The Second City.

FiendishBeastie22 karma

If you're interested in improv comedy, look up Second City alum Mark Beltzman - he runs masterclasses in various cities (mainly in New York, but he does them wherever in the world he happens to be at the time, really) called "The Art of Allowing Improv". He's a sweetheart, a very funny guy, and he loves to teach.

doct_quinn15 karma

That's awesome, thanks! I doubt he'll be doing one in Missoula, MT anytime soon, but that's someone to keep an eye on for whenever I finally move back to a bigger city.

brotherbock10 karma

Missoula? Maybe the college has an acting department that could get you some leads.

doct_quinn9 karma

We do have an acting department, but unfortunately I am far too in debt to take any classes. Plus I don't really currently have the stamina for something like that, and trying to get on social security pretty much requires me to have to stay useless until that first check comes. I'm hoping to finally get my ass in gear soon and get motivated to start hitting up some open mic nights, though!

samdr5 karma

That would be great! What's the hardest thing you've had to go through?

doct_quinn57 karma

The hardest thing medically would definitely be the thyroid surgery, as it took months to even find out I had the tumors and that that was what was making me so sick, and then the scare of cancer before the actual surgery.

Outside of the medical realm though, I've had a handful of hard times. I grew up with a very abusive, drug addicted, alcoholic, schizophrenic father. I've cut most ties with him at this point though, so that's good. I had to spend a semester of high school at a "therapeutic boarding school" that turned out to be pretty fucked up, but fortunately I got out of there too. The hardest thing of all though - about a year and a half ago I was raped by a man who thought he was "curing my homosexuality". I reported it and eventually took it to court a couple of months ago, but unfortunately I lost the case. That's been pretty difficult to get through, but everyday I get a little bit better.

brachiopodasaurus24 karma

im so sorry about the rape considering everything else you have gone through, but how is it that you lost the case? if you dont mind sharing the details behind that.

doct_quinn99 karma

Thank you. And I don't mind at all, I've actually been very open about the whole thing. Talking about it definitely helps with healing, I've found. This'll be long though - unfortunately I don't really know how to tell this story in a concise way.

The incident itself in a nutshell - Basically, I was at a friend's house, and there was a very small party (around 10ish people, the only person I knew beforehand was the friend whose house I was at). One of the guys there was the DD (didn't have anything to drink all night, was completely sober), and the rest of us proceeded to get incredibly drunk. I was falling down, vomited quite a bit, and passed out on the floor. Wasn't planning on getting that drunk, but sometimes it just happens. So the DD offered me a ride home with everyone else he had brought with him. They all lived at the university campus, I lived only about a mile away from my friend. We got in the car, I fell asleep in the front seat, and he drove everyone else home first (even though he lived there too?). He then drove me around town for 2 hours, even though I kept telling him where I lived, claiming he couldn't find my house and that I should just stay with him instead. I kept fading in and out of consciousness, but finally he took me back to my house. When we got to my house, he pulled me into the backseat, claimed he could "cure the lesbian", and proceeded to rape me. I was pretty out of it and wasn't able to fight back very well, but did try to get out of the car several times, and for some reason I couldn't get the door open. (I would find out later that it was a decommissioned police car, and he never had the locks changed, so you couldn't open the backdoors from the inside.) After he was done, I was pretty much in shock. For some reason I focused really hard on the fact that I couldn't go inside my house until I found my cell phone (as I found out later, I'd actually left it at my friend's). I went back to my house, grabbed my mom's phone, and came back to the car to call mine and try to find it. He grabbed me and pulled me back in the car, and drove me around town for another hour insisting I go home with him until I finally threatened to call the police if he didn't bring me home. He eventually did, and I went inside, proceeded to do everything that Law and Order: SVU tells you not to (throw your clothes in the wash, take a shower) and then laid in my mom's bed next to her and sobbed for like 3 hours. She was pretty alarmed, but just kind of left it alone, figured I'd had a bad night or whatever, because I kept saying I didn't want to talk. Also, I was a virgin at the time, and had never even really kissed anyone.

I finally told my mother 5 days later, and we went to the police to report it. I got restraining order against him, and then a year and a half later it finally went to criminal court.

I still don't completely understand why I lost. I had every single person from the party there as a witness, and every single one testified as to how drunk I was. By law in Montana, drunk consent is not consent. But the defense argued that "even if you're blackout drunk, that doesn't mean you can't still make decisions, even if they're bad decisions."

I had evidence photos of the fact that there were hand print shaped bruises all over my body. I had a nurse from the local rape crisis center who did my exam give testimony. Nurses from there typically never say whether or not they are positive that forceable sex occurred, because it's pretty hard to be positive. But even she said that the only possible way the injuries I sustained to the genitals could have happened was by force.

The defendant didn't actually testify, they just showed a video of his police interview. He admitted multiple times in the interview that I was incredibly drunk. His whole interview was honestly just incredibly ridiculous. His description of the whole night was ridiculous, but the "sex" sounded like really poorly written fanfiction. Here is his version -

I was incredibly drunk all night, to the point that he was embarrassed for me. (This is actually completely accurate. I would have been embarrassed for me, I was a hot mess.) When I finally stopped drinking though, I then consumed so much water that I became "waterlogged", and started vomiting from the sheer amount of water. He had to practically carry me to his car, where I fell asleep, and he drove everyone else home first so he didn't have to wake me. He then couldn't take me home right away, because I was too drunk to give proper directions. But when he finally found my house, I sat up, got a "midnight adrenaline rush", and as suddenly completely sober. I then turned to him and said "I've never made out with anyone before, and I believe that I would like to learn from you."

We then moved to the backseat of the car, because comfort. While making out with each other, he then said "Man, I wish you were actually bisexual instead of a lesbian." I then responded with "I'm actually pansexual, I just hide it." I then took off all of my clothing, and he said to me "Do you want to see it?", and I said "Yes, I definitely do." He then asked me "May I play with your pussy?" (Fun fact: If anyone ever actually said that to me during consensual sex, the sex would stop right there.) We then had sex, but the whole time in the back of his mind he was thinking "This is wrong, I hope I don't end up in a police interrogation room or something." (Yes, he actually said this.) But fear not, for he intentionally did not give me an orgasm, because he knows that once girls have an orgasm from a guy, they become attached to him. He also worried that I was romantically interested in him, and he didn't want a romantic relationship with me, as that would "go against my sexual orientation." (But I thought I was actually pansexual?!) Then I started crying, but he knew that was ok, because that's what girls do when they lose their virginity, because the last girl he had sex with was a virgin and she cried hysterically too and then never spoke to him again. Girls are crazy. He then helped me get dressed, helped me look for my phone, and then we joyously drove around for another hour and he graciously offered to let me stay at his place where I could have the bed and he would sleep on the floor, but I declined, and decided to go home instead.

So the closing from the defense was a whole mishmash of things. "Buyer's remorse". Drunk people can still make decisions. You can't really prove she was drunk. Why'd she wait 5 days to report it? Does he really look like a rapist? I mean look at that face! She isn't really a lesbian, she's just confused and has identified as that for so long that she can't accept the fact she's actually attracted to men, and is afraid that if the gay community found out they'd reject her. This was just her finally deciding to let nature take it's course. And the weirdest one - I testified that during the rape, he'd held me on top of him, and I struggled to get off, and he kept pulling me back down. During the struggle, he (I'm pretty sure accidentally) penetrated me anally. The defense lawyer was like "Do you really believe that? How can a man "accidentally" slip out and penetrate someone anally?" (Of course on the side, my mom was all "This man has clearly never had any real, fast, intense sex. Because it happens alllllll the time.")

He was found not guilty, and my lawyer interviewed the jury to find out why later that day. Apparently the majority of the jury just didn't give a fuck and just wanted to go home as quickly as possible, and there were a handful of men on the jury that were just not going to be swayed to vote guilty. So they all just went for not guilty to be done with it. The quotes from the adamant jurors were as follows: "There's no such thing as lesbians, she's just confused, and now she regrets it." "That's not rape, that's just college."

tl;dr - Lesbians aren't real; you can still consent to sex with a sober person when blackout drunk; all girls who claim rape are just regretting a one night stand; big, goofy, baby faced chubby boys in the marching band can't possibly be rapists

Bassdistortion21 karma

Wow this is enraging. I'm sorry about your experience. May karma strike, have him go to jail, get raped by multiple men at once concluding in his death and have him end up burning in the deepest fiery pits of hell.

PS: I don't really have religious preferences, so I'm hoping there's a hell just so he could go to it.

On the other hand, it seems that your life, although heavily set back, has been pretty much taken to the fullest. You're awesome!

doct_quinn8 karma

I'm not gonna lie, I may or may not have grotesque fantasies like that on occasion.

And thank you! Life is all about being lived to the fullest.

eViLj40615 karma

jesus fuck. that jury is messed up. I live in great falls, and if ANYWHERE in montana was more accepting of LGBTs, I thought it would of been Missoula. Sometimes our state embarrasses the hell out of me. I'm truly sorry for your ordeal. But its inspiring that you've been able to keep such a great spirit and attitude about everything. Hope you have a great Christmas and keep on keeping on :)

doct_quinn3 karma

I always thought Missoula was incredibly accepting too, but after being here for a while, you start to see the dark side of it all. I've discovered that Missoula isn't nearly as "liberal" as it thinks it is. It's just more liberal than the rest of Montana - and that doesn't always really mean all that much.

Thank you very much, and Merry Christmas to you as well! :D

DasBoots328 karma

just make me wonder about this jury of my peers thing. i do not believe the average voter should qualify for something this important. i'd need a jury of engineers to actually be my peers but that'll never happen. i'll just be framed and guilty because i used words that were too big. sorry we're stuck in america.

doct_quinn3 karma

Sometimes I feel the same way (like after my trail, for instance). But unfortunately, I can't really think of an alternative to the jury system. Maybe there is one out there, and I just don't know enough about how various justice systems around the world work.

minicpst4 karma

Holy fuck.

I am so sorry. That is screwed up on so many levels.

I don't much believe in karma, but I hope that guy gets some heading his way.

And I hope you can heal, live a good life, and show him and everyone. Wow.

doct_quinn3 karma

That's pretty much my main way of getting revenge at this point - live an amazing and happy life, and prove that he'll never the kind of control over me to stop me from achieving my dreams.

PichinchaV13 karma

What would you say has been more difficult, the medical conditions or the non-medical suffering?

doct_quinn34 karma

Probably the non medical problems. It's not that I'm actually really all that in control of my medical conditions, but I definitely feel like I am more than the others. Illnesses feel like they have a kind of weird logic and consistency to them (even when they really don't) compared to social/relationship problems. At the end of the day I can fix the fact that I don't have a thyroid with a single daily pill, but I can't do the same with an abusive father.

Freya-Freed19 karma

I'm also gay and actually I almost dated an intersex woman once. Her life seemed pretty rough. She had a bunch of medical conditions that affected her health, including one or more autoimmue diseases. She was also untreated for a lot of it because her parents were extremely religious and didn't trust doctors, which just made things worse. I certainly hope your parents are a lot better then hers, she always seemed extremely depressed and lonely but she was an awesome person. We lost contact after a suicide attempt and then she pushed me away because she "didn't want to drag her down with me". I wonder a lot if she is well a lot. I hope you are well too.

You'd be more then welcome on /r/actuallesbians by the way. :)

doct_quinn8 karma

I'm sorry to hear about your friend, I truly hope she's doing a lot better now. Fortunately my mother has been amazing my whole life, and has really gone above and beyond. Back when I was first diagnosed with CPP (my first real problem), google wasn't really a thing, and she still managed to call so many doctors around the country to get multiple opinions. I know she credits a lot of the way she handled things to a group she discovered called The Magic Foundation. She pretty much always says that I owe them my life. They're basically an organization to bring parents of children with endocrine growth disorders together to help educate. I used to go to their yearly conferences every year, and it helped my mom learn a lot about how to treat things, and it was also great to be able to meet other kids with my same problems. But really, having an understanding parent is what makes all the difference.

toxicmaniac56 karma

Are or were there any physical features on the outside that made you notably look intersex and why did you identify as a female?

doct_quinn113 karma

I was diagnosed with my intersex condition when I was 7 rather than at birth, as I appeared completely "normal" then. I only actually heard the term intersex for the first time about 9 months ago when I met an amazing activist. The only real physical feature that make it obvious is that I have a fairly androgynous face, and if I don't keep up with waxing, I can grow a pretty nice beard. And I identify as female, seeing as I was assigned female at birth and raised as a girl. (Although it feels weird to say it that way, as my parents were actually really gender neutral when it came to my childhood. I was never forced into dresses or playing with dolls or anything like that.) I don't really feel particularly masculine or feminine, or really lean more towards one gender or the other, but just picking one tends to make life easier. (You know, when it comes to filling out forms, pronouns, all that stuff.)

eoiaeoiae14 karma

Oh man, you sound agender! I am, too -- it was a huge relief when I read ChaosLife, which is a comic about/by an agender person in a same-sex relationship. There are others out there!

doct_quinn50 karma

I've read a little of ChaosLife, and it's pretty great!

I definitely feel pretty agender a lot of the time, but I don't usually identify myself as such to other people. It's one of those things to me that just really isn't worth the effort of having to explain. I also feel like it's one of those identities that's obviously completely valid and real, but has been so bastardized by people on the internet that it's sometimes hard for people to take you seriously when you tell them in real life. It's quite unfortunate. Good for you about being so open about it though! I've talked to my mother about it quite a bit, and she completely understands and talks about how she can see that in me. But I also feel like gender is such a fluid thing, and it's so hard to define what really is "male" and "female", that at the end of the day, for me it doesn't really matter what I call myself.

teezy10151 karma

Can you explain what intersex and CPP are?

doct_quinn93 karma

Intersex is where a person has characteristics typical of both sexes, such as having XY chromosomes, but having an otherwise anatomically female body. For me, I'm anatomically female for the most part, but am completely infertile, and my body doesn't produce any estrogen and produces exclusively testosterone.

CPP is when puberty starts well before the average age, sometimes as early as birth. For me, it started at around age 6. The treatment is relatively simple, in my case I just had an injection of a hormone suppressant every 3 weeks until I was 13, at which time I was taken off of the medication and immediately started puberty again.

beanperry47 karma

First off going off of the pic you provided I don't think you have a fairly androgynous face. You looked as pretty as one could after as surgery. Secondly how has all of this affected you mentally and emotionally? Has it caused people to treat you differently if once they know about the intersex issue? I am also going to send this to a friend of mine I think may be in a similar situation. Thank you for your story.

doct_quinn37 karma

Aw, well thanks. And I think the androgyny has just come out more as I've gotten older, and is probably made more so by my short haircut.

The illnesses have definitely brought me down mentally a few times, but I always try to remain as positive as possible, and always bounce back in the end. And as for the intersex part, surprisingly, I've really had no negative reactions. When I tell most people, they don't know what intersex means right away, but after I explain it they're just like "oh, well that makes sense." I was definitely incredibly nervous when I told a girl I was dating, but she was also surprisingly not bothered at all by it. I've only had one negative reaction since coming out about it, and that was from a really stereotypical drunk frat bro at a party who overheard a conversation between myself and a friend, and all that was was him saying "Ew, that's fucking weird."

And definitely tell your friend about this, I'd be more than happy to talk to them. If they wanted to, I'd also have no problem talking in private and sending them some links to some great intersex resources.

underscore_chopstick48 karma

Middlesex, by Jeffrey Eugenides.

One of the best books I've ever read

doct_quinn13 karma

Been on my to read list for quite a while, looks excellent and I've only heard good things.

underscore_chopstick17 karma

move dat shit up to da top, doe. it's a fantastic journey and beautifully written. truly a masterpiece.

doct_quinn14 karma

Will do! I had kind of forgotten about it, and I was trying to make a list of books I want to read next and couldn't think of a whole lot. Definitely throwing that at the top now. I know what I'll be buying with my Christmas money!

brotherbock13 karma

Ever seen Freak and Geeks, the TV show? There was a fantastic episode about a stoner character who starts falling for a girl, to have her confide in him that she "could have been either" when she was born, and her parents chose. (Pretty vague about the specifics in the show.) Fantastic episode, including the stoner (Seth Rogan, btw) sitting down and listening to 'gay' music to see if he's okay with being gay, because he thinks for a while that he might have to be, because he likes her.

doct_quinn7 karma

I haven't! It's been in my netflix instant queue forever. This definitely makes me want to move it up, though. Sounds like a fantastic episode, I never realized that show got so deep.

itroitnyah28 karma

So that answers my question about whether you have the tunnel or the train, but do all intersexual people have the tunnel, or do some get the train?

doct_quinn28 karma

Some get the train. It's definitely less common though, as a lot of parents elect to have genital normalization surgery during infancy, and that usually involves making the train into a tunnel.

af50513 karma

[deleted]

doct_quinn15 karma

This was taken roughly 7 years ago, so I've changed a little bit since then (although I suppose the general face structure stays about the same). I get comments from people IRL quite frequently about looking very androgynous, but how much of that is my actual face and how much is the fact that I have a fairly short haircut and tend to dress a little more on the masculine side, I have no idea.

Jaksuhn6 karma

Do you have breasts and/or a vagina ?

Edit: Oh, and what is GERD ?

doct_quinn25 karma

I do! I pretty much look exactly like your average woman, the only real outside physical difference is that I can grow a beard if so desired.

And GERD is basically just Acid Reflux Disease.

af50517 karma

So then most mexican and brazilian women are intersex as well?

doct_quinn42 karma

Don't forget the Greeks and Italians.

(But really, it's more than your average misplaced and scattered lady beard - I can get a full on neckbeard with matching sideburns. It's not attractive.)

Titaniumchic2 karma

Question: When you were an infant did you have reflux or any digestive symptoms? Or did all the signs and symptoms show up the older you got?

(I work in early intervention with kiddos 0-3 and I swear, severe digestive issues are precursors/early signs that stuff is just not formed right in the midline)

doct_quinn3 karma

I didn't. The digestive problems really didn't occur until I was an early teenager. The only problem I actually really had as an infant were constant ear infections. I swear, I'm pretty sure I had one long ear infection from birth until age 4.

FineLikeAPorcupine-2 karma

If you're anatomically female, how the hell did your rapist think he was curing your homosexuality?

doct_quinn1 karma

I'm a lesbian. It's the old "she just hasn't met the right penis yet" philosophy.

ardisfoxx31 karma

You seem pretty clever, and you are beautiful, so there's that.

A good friend of mine suffers from an undiagnoseable AI disorder too and I know that it's a constant battle.

I hope you continue to find strength through the kindness of friends, and strangers.

doct_quinn23 karma

Thank you very much! You're incredibly kind.

I know exactly what your friend is going through. I hope everything turns out well for them, and that they eventually find a diagnosis. Waiting for an answer is always the hardest part.

Saskura26 karma

Hey I was wondering. Have you had a boyfriend? or girlfriend? Have you had (or are you able to have) intercourse. Do you feel sexual attraction.? towards male or females? to any of them: if no is it because of intersexuallity or the illnesses

doct_quinn65 karma

I'm a lesbian, and I've dated two women (still with one of them! :D). And I can have intercourse completely normally, and feel plenty of sexual attraction. Although all desire pretty much goes out the window if I'm not on my female hormones, so I have to make sure to be extra vigilant with those.

Saskura14 karma

Great i happy for you:) I could not imagine a life without it:) One more thing. Was i natural to become a lesbian? or how did that unfold ?

doct_quinn41 karma

It always seemed very natural to me. I can honestly say that I knew I was gay to some degree from a very young age. I officially came out when I was 15, and even though it was hard to be openly gay that early in high school, it was like a giant weight was lifted off of my shoulders, and at least part of me has always been much happier ever since.

ilovelamp4216 karma

Does your disorder predispose you to be attracted towards women, or is it too rare to know how it affects sexual identity?

doct_quinn3 karma

This is something I've thought about a lot and unfortunately don't have any kind of answer for. I'm 100% positive that I was born gay, but whether that's for whatever reason most people are born gay or because of some weird hormonal / medical reason, I'll probably never know.

My mother has mentioned before that she saw a woman give a talk back in the 90's about how she was doing her doctoral thesis on gender identity and sexuality in CAH girls, and one of the biggest thing she noticed was that the vast, vast majority of CAH girls that participated in the study tended to prefer things that are generally considered "masculine". Of course we also live in a world now that typically allows little girls to play with whatever kind of toys they want, so it could all just be coincidental. I wish I knew who that woman was though, so that I could look up her research.

progynova25 karma

Sup.

I was diagnosed with CAH literally yesterday.

I've been an anomaly for years. Born male, normal male genitalia, all good. Puberty pretty early, got pretty sick.. was transgender in no time.. had gender reassignment surgery with all the bells and whistles. Health improves.

After all those years, literally last week: Unusual blood results, come back in to discuss, here have an ultrasound, oh you have ovaries, here let's take some more blood. Oh you're genetically female. Oh you're a CAH case. Gratz.

Literally all of my wats. I don't even know what to tell anyone, including myself.

How the fuck are we meant to deal with stuff like this. Is there anything I should be aware of?

I just can't get over having a sex change to my sex and finding out about it months down the line.

ingrowntoenails6 karma

Sounds like you're in a very unique situation.

I have no idea what you're dealing with emotionally, but I hope you're able to be happy in life.

progynova5 karma

Haha. I have a great life, this is just the weirdest thing EVER.

I was literally transgender 7 days ago. That's how I saw myself, and what I was. I'd had my surgery, I was becoming more comfortable and confident just being me. I used to look at intersex people and think 'if I had that instead of this, a lot of my current woes wouldn't have come about'. God the irony. I also feel humbled in hearing the medical problems of OP. I've exhibited some strongly adverse effects due to my gender and sex issues, but nothing like the illnesses she's suffered with, which makes me feel all the more horrible for wanting to be diagnosed this way after all these years.

doct_quinn3 karma

Wow, you have a crazy story. I can't imagine finding that out out of nowhere. I guess on the plus side, this means you don't have the salt wasting side of CAH or anything?

I wish I had some amazing piece of advice or wisdom to impart on you, but unfortunately I've got nothing. But I am part of decent sized, private, closed facebook group for intersex individuals, and I know of a least a couple of people in there who have dealt with something similar. If you wanted, we could correspond via pm and I could add you to it. It's an incredibly varied group, and most of the people there are much more knowledgable than I am.

And whatever you do, don't feel bad for wishing you were intersex! Don't worry, I'm not offended or bothered or anything. Everyone's issues are equal in their own way.

Neosovereign25 karma

I'm a medical student and I find this very interesting. You have said elsewhere that your doctors don't know what is wrong with you. I personally think you should try to see a geneticist. At first glance it appears to me that you have some kind of genetic abnormality that presents in many unique ways.

So to my question: How has your experience with doctors been so far? Is there anything that stands out as particularly good you could expand on? Bad? I would love too see your take on the doctor/patient relationship.

On a more positive note, I hope you are having a great life and I wish you luck in the future.

doct_quinn37 karma

I'm hoping to get to a geneticist at some point, but unfortunately I'll have to wait until I have enough money to travel to one.

Good: I had a fantastic endocrinologist in Chicago from about age 9 to 14. He was incredibly knowledgable, and was upfront and frank about everything. It's very hard as a child to find a doctor who is willing to talk to you and not just to your parents, and he always spoke to me first and treated me like an adult, which was fantastic. Kids don't always need to be coddled when their at the doctor, sometimes they just want it laid out for them. He was primarily my doctor for when I was doing growth hormone treatment, and when that was about to end and he discovered a new problem (anti-ovarian antibodies), he was completely straight ford and just told us that he didn't know enough about it to treat it, and referred me to a different doctor who he thought would be better.

My other favorite doctor is actually the family physician I'm currently seeing for just day to day problems. She's the only doctor I've ever seen that truly understands pain management, and she was also the person who figured out that I had EDS. We tried a lot of different treatments for pain for a long time, including things like physical therapy, yoga, and chiropractors, and nothing helped at all. The only thing that worked at all was narcotics. I've always been incredibly paranoid about becoming a narcotics addict, but she finally sat down with me one day and gave me a long speech about the difference between addiction and dependance, and how it was a matter of quality of life. I could live in pain everyday for the rest of my life, or I could take 1 to 2 Percocet a day, live with knowing I'm dependent on it, maybe occasionally go through small periods of withdrawal, but not be in pain. So I've been taking painkillers daily for the past couple of years, and my life has drastically improved. I don't know if I'll ever get another doctor willing to do a long term pain management treatment like that again, and I'm terrified of moving and leaving her.

Bad: The first 2 endos I had from ages 6 to 9 were just awful. They would always pretend that I wasn't in the room, and completely ignore me, just because I was a child. They also constantly tried to put me on experimental drugs that weren't approved by the FDA yet, and every time my mom would say that she'd think about it, do some research, and find out that there was a reason the FDA hadn't approved it. One of the drugs had a long history of causing heart failure in children. They also both had the habit of piling on more drugs than were necessary. Oh, this pill is causing a negative reaction? Instead of switching meds, we'll just add this one to combat that reaction.

The other really bad one I had was my last endo that I recently stopped seeing. I had to drive 8 hours from Montana to Seattle to see her. The first appointment seemed to go well, but she didn't seem quite proactive enough to me. She was the one who discovered my pituitary tumor, but she insisted on not treating it in any way, as she was convinced that it was unrelated to anything else going on. I also had an elevated IGF-1, and she said that she suspected acromegaly, but said that she'd wait to treat until I actually had the physical symptom. Considering my endocrine history and the fact that the physical symptoms of acromegaly are irreversible, I'd honestly prefer to be proactive and just treat the tumor before that happens. But I went ahead and did what she said and came back a year later, and she literally walked into the room, looked at me and said "I don't want to treat you anymore, you need to find someone else" and then walked out. After she knew that I drove 8 hours and had to spend 2 nights in a hotel just to see her.

So advice for a future doctor from a patient perspective? Always be upfront with your patients. If you don't know the answer to something, tell them that, they'll respect you more for it. Treat children like tiny adults, they're smarter than you think. Talk to them to, not just the adults.

Sorry for the giant wall of text and ramblings, I just have a lot of feelings about what it means to be a good doctor.

And thank you very much!

Neosovereign6 karma

Thank you for the well thought out response! I'm glad you have had some good experiences. I'm sorry you have had some bad ones. Doctors are people too and they make mistakes.

The endocrinologists you had should have paid more attention to you and thought about the consequences of the drugs they wanted to prescribe to you more. But it is important to remember that every patient is different and they are trying their best, not to mention they didn't force you to take experimental drugs, they gave you (or your mom) the option, which is always important.

Thank you for the advice btw, and I hope I can have patients like you in the future!

doct_quinn7 karma

I've definitely had far more good experiences than bad, those were all the ones that just stuck out the most. And don't worry, I know that doctor's are mostly just doing their best. Although I will say that the first 2 endos I had were legitimately terrible. I knew plenty of other people who saw both of them as well, and everyone tended to have the same problems. The latest one though wasn't a terrible doctor, I'm sure she was great with other patients, we were just a poor fit more than anything.

Thanks, and I hope I have a doctor like you someday in the future! Anyone wanting to hear advice from patients is going to make an excellent doctor.

newserbob16 karma

Do the doctors have any idea what caused all this?

doct_quinn34 karma

None at all. When the first problem (the CPP at age 6) was diagnosed, they just assumed it was idiopathic. But when more and more kept coming, it became pretty obvious that there was something structurally wrong in the brain. Unfortunately, I've yet to find a doctor who actually has any answers though.

3AlarmLampscooter24 karma

Have you been tested for chimerism? https://en.wikipedia.org/wiki/Chimera_(genetics)

This strikes me as a plausible underlying cause - essentially you could have two different populations of cells that are waging war on each other.

doct_quinn36 karma

I've never even heard of that before. I've never actually had any genetic testing done, so I doubt I've ever been tested for it. Thanks for the information, I'm definitely going to have to do more research on this.

3AlarmLampscooter19 karma

Glad I could help!

No offense to your doctors; but I might question how competent they are for not preforming any genetic tests on someone with an "Unspecified Autoimmune Disorder", especially with intersex traits! I might be inclined to shop around a bit...

doct_quinn21 karma

Oh trust me, I've been shopping around like crazy. I just dropped my most recent specialist, and have been on the lookout since. The only problem is that money is incredibly tight until my social security comes in, and at the moment I live in Missoula, MT. We don't exactly have an abundance of doctors, so I'm going to have to do some heavy traveling for anything.

arusha_mira18 karma

NIH has a program for studying rare diseases, and it sounds like you would be a good candidate. If they think your case is worth studying they will get you over there and study you on their money. Check out their program.

doct_quinn16 karma

I actually have quite a few of their studies bookmarked, and have been meaning to apply for them. This served as a much needed reminder, thanks!

Ifuxdalion8 karma

Hey, I live where you live. Neat.

doct_quinn9 karma

Ah yeah, the first Missoulian besides myself I've seen on reddit!

TheBakercist6 karma

It's about time Missoula had the internet!

I grew up there. Woods and shit, that was it.

doct_quinn5 karma

Hey now, there's a river here too ya know!

Pizazz_Princess5 karma

Hey I'm going to school at UM. Go Griz!

Also- you're a babe. I don't see how you can call yourself androgynous because.. You are a womanly looking.... Woman.... I guess is what I'm trying to say.

Also also, way to have a stellar attitude about everything that's been thrown at you, I think it takes a certain kind of person to handle it all with such poise and good spirits.

I am not one of those.

More power to you

doct_quinn2 karma

Why thank you kindly!

And I haven't always had this stellar attitude, just be glad I wasn't doing this AMA when I was a teenager. It would have been depressing as hell.

PersistantRash9 karma

Do you have any "extra" organs? That is another indicator of chimeraism, you wouldn't perhaps have been born with any clefts or odd/misaligned raphes as well? They are often removed or "trimmed" shortly after birth, many people don't even know they ever had them.

Note :: Links are NSFW, raphes are kinda like... uh... seams from when your body was putting itself together in the womb.

doct_quinn8 karma

Nope, don't have any of that, fortunately.

underscore_chopstick8 karma

Beware, getting genetically tested is kind of scary. Because no matter what you do, you can't change your DNA.

doct_quinn9 karma

I feel like there are few things medically that can truly frighten me at this point, but thanks for the heads up.

PersistantRash14 karma

I knew a woman from out east who has that. They only discovered it after she failed a paternity test for her own baby (routine at some hospitals after a spate of baby mix ups in the 80s). Then they tested her other kids and she failed for every one of them as well. Took them years to finally put it together with her litany of other health problems. Last I read up on the subject it was theorized to have some relation to an absorbed fraternal twin. She takes the same drugs people who get organ transplants are on.

edit :: she passes paternity tests if the sample is taken from some tissues, but fails if it's a mouth swab or blood test. The last theory I read was that essentially they are 2 people who "fused" in the womb, and instead of coming out dead or conjoined, against all odds they come out functional often totally normal looking. Chimeras also often have "surplus" organs like extra kidneys, leading more credence to the super conjoined twin theory. Given that /u/doct_quinn sounds like she may have some extra sexual organs it further increases the need for her to be tested for Chimerism.

doct_quinn13 karma

Man, that is one crazy condition. Fascinating. I've never heard of it before today, but I can guarantee that I'll be doing a hell of a lot of research on it.

boxybaritone14 karma

Hi Allison! I really appreciate your willingness to share with us. I am currently working on a minor in gender studies and I am very interested in intersex conditions. I am currently reading a fascinating book called Bodies in Doubt by Elizabeth Reis that examines the way people with intersex conditions have been treated throughout history. I haven't finished it yet, but I really like it so far and think you might too.

doct_quinn10 karma

Thanks, I really appreciate the recommendation! I haven't actually read any intersex books yet, and have been really meaning to for a while.

Oreganoian14 karma

After reading your answers and whatnot you seem very level headed, intelligent and fun. I'd like to give you a good solid high five.

doct_quinn12 karma

Well thank you very much, and I'll joyfully accept that high five.

Dominany12 karma

You are such a brave person, especially in view of your mental situation. I would hope that you would be fascinating to geneticists. Do you participate in any testing about autoimmune diseases? I also am hypothyroid and it sucks.

doct_quinn14 karma

I don't think I'm particularly brave at all, but thank you very much for your kind words! I just take it all as it comes and handle it the best I can. And doctors do seem to always be pretty fascinated by me, but unfortunately very few know enough outside of their specialized area to really provide much insight. I used to participate in a lot of autoimmune testing in the past, mostly to rule out obvious illnesses such as lupus. But where I live unfortunately doesn't have very many good doctors, so I'm going to have to wait until I move to a bigger city to really continue that.

And being hypothyroid really does suck, but hey, at least it's just one pill a day, right?

cyclist8911 karma

[deleted]

doct_quinn13 karma

I have. I was a rarity in that it wasn't confirmed until I was about 7, but it's obviously been there since birth. And I'm sorry to hear that you have CAH as well (and you went and had to be the ultimate medical hipster and get the rarest version!), but I feel ya on the salt tablets. I only have minor salt wasting, but I used to have to take them all the time. My most recent doctor took me off of them though, so I've been trying for months to find someone to prescribe them to me again.

I didn't know there was an association between CAH and EDS, but that would make sense. I'm definitely going to look into that. I swear, there's something new I learn about EDS everyday.

And I've suspected that I have POTS for years, but I've yet to have someone make an official diagnosis.

cyclist894 karma

[deleted]

doct_quinn7 karma

Don't apologize for the ramble at all, everything you said was very interesting! And I've never actually talked to someone with EDS that wasn't a family member, so this is great. And I've definitely never talked to anyone with both EDS and CAH. And EDS really is fascinating - I've never really heard of a condition before that affects quite so many different areas of the body at once. I'm pretty sure that's why it's so difficult to find a doctor that knows anything about it beyond "so how far can you bend your fingers backwards?"

Spironolactone is what I've always taken for CAH, so I guess at least you were on the right track there? And I hate the anxiety diagnosis. It's seemed like every time I've gone to the doctor with a legitimate complaint over the years, the first thing the doctor does is right it off as anxiety or depression. I'm sorry, but I'm pretty sure I can figure out if I'm depressed, and can tell the difference between that and a physical medical problem. That's part of why it took so long for my thyroid tumors to be diagnosed - all of the symptoms were things like constant vomiting (following with dehydration), fatigue, trouble swallowing, and just general malaise. So of course 90% of the doctors kept telling me that I was secretly depressed for months, and when I finally went to my yearly endo appointment, all she had to do was look at me before she went "oh my god, you have enormous thyroid tumors."

And I think I'm going to order those salt tablets. I've been trying to get on a combination of salt tablets / steriods that I used to take (can't remember the name of the actual drug right now), but as I don't currently have an endo, it's been hard to find someone willing to prescribe them. At least that will help temporarily with the constant drinking and peeing, though.

I'm definitely bookmarking that article to read later.

I'd love to do full genetic testing at some point. I know I had at least one genetic test when I was a kid (I had to, since I know the exact form of CAH I have. I just have no idea where the records from all of that are, considering it was so long ago.) The doctors I've all spoken with are fairly sure I have classical EDS based on the symptoms and everything, but I'd love to be able to actually know for sure. My aunt's pretty well renowned geneticist (and she has EDS too), so I just need to finally get around to asking her how to go about the whole thing.

And that's kind of how I feel about the POTS thing too. It would still be nice to have an official diagnosis though. I like having labels for things. haha

(sorry for rambling back at ya!)

cyclist894 karma

[deleted]

doct_quinn4 karma

Haha don't worry about making sure to be "AMA appropriate" or whatever, I'm enjoying just talking to you.

I don't actually live in Washington, I live in Montana, so I've only been to Swedish twice. I saw a neuro-endocrinologist there, but recently had to stop seeing her. Unfortunately Seattle is pretty much the closest place for good endos around here (although I am planning on looking into Salt Lake City too). But if you have any good recommendations for Seattle doctors, I'd be happy to hear them! And I'm glad that you have an awesome primary care. I feel like that's super important, because that's who you're going to be seeing most of the time, and that's who you need to take care of stuff related to EDS like painkillers and extra antibiotics.

I'm finally at the point where if a doctor even hints at it being "just anxiety" and not a real illness, I just walk out and find someone else. I've been through enough to know when it's psychological and when it's physical. Man, brain swelling though, that had to be scary. I hope it all turned out ok!

I haven't heard of that guy, but I'll just take your word at him being awful. I talked to the Mayo Clinic a while back, and they had a few people into EDS that really wanted to see me in Rochester, so here's to hoping that I'll make it there sometime soon!

cyclist892 karma

Sorry again about the wall of text -- I actually forgot to mention a few things and hope it's not totally overwhelming to add this comment here!

If you happen to know if you are of Ashkenazi or Sephardic descent, that also could help differentiate subtype of CAH (21-hydroxylase is very common in Ashkenazim with 11b-HSD being more common in Sephardim). Thyroid issues, GERD, and autoimmune issues are more commonly associated with Ashkenazi ancestry if I'm remembering correctly (but hypothyroidism in Ashkenazi is associated with exceptional longevity too, so that's kind of cool!).

Also, on the POTS front, Mayo Clinic also has a panel of tests for autoimmune disorders that they check for in patients diagnosed with POTS. I believe they're able to identify antibodies in about 50% of patients with POTS, but everything came back fine for me. If your symptoms of POTS are more associated with EDS than an autoimmune disorder, I think it would likely come back similar for you, but just something to think about, I suppose...

doct_quinn3 karma

Not a problem at all, you can type all day and I'd be fine with that! I never thought I'd learn so much doing an AMA.

Oh, I just looked back and saw that you mentioned the Jewish descent in your first post, I missed that. I'm not, at least as far as I'm aware. You never really know. That's pretty interesting, though.

I've been hoping to get to the Mayo Clinic sometime in the near future for a number of reasons, so that's great to know. That's something to take note of and talk to them about when I finally do make it there.

brotherbock10 karma

Honestly, one of the more fascinating AMAs I have read in a while. You certainly sound like someone who has her head on her shoulders, despite more issues than most people have to deal with.

Good on ya, and keep on keeping on. :)

doct_quinn3 karma

Thank you kindly! I can guarantee you that I don't have my head on my shoulders quite so well in real life, though. Everything always sounds better in print.

DancingChicken9 karma

We share a number of the same issues - EDS/gastroparesis/GERD, in addition to panic disorders.

From one zebra to another, hugs.

Edit: Whole host of other genetic issues, different. When you find a good geneticist, let me know.

doct_quinn8 karma

I've read in a few places that there's a correlation between EDS, gasroparesis, GERD, and panic disorders. So I guess we now have anecdotal proof!

Hugs right back at ya!

And if I ever do manage to find one, will do!

Omnidan9 karma

I read most of your questions and answers so far, but I haven't seen any more pictures of you than the one you provided, can we get some more? you know, for science.

doct_quinn26 karma

Here ya go, I just threw a few favorites together. http://imgur.com/a/9UgAc

protestor9 karma

You're beautiful.

doct_quinn2 karma

Why thank you, you're too kind.

sillyparrot21028 karma

I don't know if you are still here but I am a girl who is in her mid twenties and has a rare genetic disorder that makes me go through early menopause before age 30! Go us. (mine is probably minuscule compared to what you are going through, but you have my support)

doct_quinn13 karma

Don't worry, still here! And I also started menopause early! Technically started at the same time my delayed puberty went into effect at 13. Hot flashes were a real bitch in middle school. Thanks for your support, it's much appreciated. :) And no medical problem is minuscule, everything has their own challenges, and I know from experience that early menopause is one hell of a challenge.

EmmaThePhotographer8 karma

I know you said you're infertile, but have you ever considered having children, either through adoption or IVF treatment with your partner or something along those lines? If not, why? And if so, how would you/would you bring it up with your child? How do you think being intersex would affect the way you parent, if at all? Great AMA! One of my favorites!

doct_quinn5 karma

It'd be a long way off, but I'd love to have a child one day. I have no idea really who I'd be with then, but assuming it's my current girlfriend (here's to hoping it is!), then we'd probably adopt a child. And I really have no idea how to be a good parent at this point in my life, but I imagine I'd be very honest with my child about everything. Obviously not while they're very young, just because they wouldn't understand and it'd be unnecessary, and I wouldn't want to scare them somehow. But when they were old enough to understand (whatever age that may be for them), I would probably just be straight ford and explain everything as best I could for them. It'd probably just happen naturally during conversation, or if they had a specific question. I don't think that my being intersex would affect my parenting too much in most ways. One thing I can think of though, is that I'd probably be much more conscious of letting my child make their own decisions about their body for themselves. (I didn't have to have any of the genital normalization surgeries, but I know several people who did, and it was incredibly traumatic for them and it affected them for the rest of their lives, usually negatively.) So for example, I wouldn't pierce my 2 year old daughter's ears for her, and I probably wouldn't circumcise my son. And there wouldn't be any strict gender roles whatsoever, such as never forcing my daughter to wear frilly things if she wasn't comfortable with that, or not allowing my son to wear a dress if he desired.

And thanks! Yours was a great question, I had to actually sit and really think about it for a while. I've never really thought about how being intersex might affect the way I parent before.

Fivestarlesson5 karma

What medications do you take to deal with the pain and other problems caused by your conditions?

doct_quinn7 karma

For pain I primarily take 7.5 mg Percocet. I used to take a single 5 mg Hydrocodone daily (did that for about 2 years), but had to up it after a while due to an increase in injuries. I've been doing Percocet since about February, and I usually take about 1 to 2 a day, sometimes a third if it's a particularly bad day or I've had a recent injury. And I take Aleve occasionally to help control inflammation.

Lego_Legz4 karma

What's your stance on medical marijuana being used to treat chronic pain? I know a few people who have greatly improved the quality of their lives by using it, so I was curious if that option was ever presented to you.

doct_quinn4 karma

I think medical marijuana is a fantastic thing. I thought about trying to get medical marijuana a while ago, back when it was easier to get in Montana. I kind of gave up when they restricted the laws, though. I used to smoke fairly regularly, but honestly it never did much in the way of pain relief for me, unfortunately. So I guess in the end it's pretty ok that I didn't end up getting my greencard. I really wish I could get some pain relief from it, because I feel like that would make my life so much easier. But I'm also not really a huge fan of being stoned, so I'd have a hard time with the mental aspect of smoking it regularly anymore. Then again, I've never tried any of those fancy strains the the medical stores sell. Who knows, maybe I'll find one out there that works perfectly for me one day.

Letsgo15 karma

No questions, just wanted to say you are really brave for doing this and seem to be pretty positive about all of the difficult stuff life has thrown at you. I hope you get all you desire.

doct_quinn3 karma

Thanks a ton, that's very nice of you to say. :) I hope I get all I desire as well.

luxii45 karma

Do all these conditions affect your relationships? Friendships and romantic relationships?

doct_quinn23 karma

They do. For a long time, especially when I was younger and in high school, it was very hard to keep friends. People couldn't handle that I'd sometimes not be able to leave the house and do things for long periods of time, and they'd eventually fade away. Now that I'm older, it's a different kind of challenge - people are very judgmental when they find out that you're not working or in school (I get a lot of "You're just lazy!" and "Stop leaching off of the government!"), and it's hard for them to understand the magnitude of my condition, especially when it comes to chronic pain. I take narcotics pretty much daily for it, and that definitely scares off a lot of people. And I also can't stand being around people who are constantly offering me their home remedies for my conditions, like "You just need some vitamin c and you'll be fine!" or "Just try yoga and you'll never need another painkiller!". Fortunately though, I've finally found a very solid and supportive group of friends, and I have a wonderfully understanding girlfriend.

pbandjeverywhere4 karma

How is it moving around? Can you walk normally?

doct_quinn6 karma

Moving around can be difficult. Sometimes I'm completely fine, but most of the time I have at least a slight limp. I dislocate my right knee cap very frequently, so that causes a lot of problems, as well as just general chronic hip pain. I can't do long distances really at all, which is kind of sad, because when I was younger and in less pain I really enjoyed hiking. Lately it's been pretty rough though, because I had several bad knee cap dislocations over the last few months. I'm having knee surgery in a couple months though, so here's to hoping for some improvement after that!

wwwpastacom3 karma

There are 300 million people in America. Congrats. You are the only one in America with Congenital Adrenal Hperplasia 3 Beta HSD.

doct_quinn4 karma

I like to think of myself as the Ultimate Medical Hipster.

Weareallaroundgaming3 karma

Sorry if this has been answered. What gender are you attracted to?

doct_quinn8 karma

Female. I identify as a lesbian.

araeos3 karma

I learned so much reading this, thank you for doing this ama!

My dad is also an addict. And an asshole. I know how hard that was for me growing up. You'd mentioned having mostly cut ties; for me when I cut all contact I just felt so free. Like his sick miasma had lifted.

Stay strong and positive, and thank you again for doing this!

doct_quinn3 karma

Thanks! I'm not an expert by any means, but I was hoping this would be pretty informative for people.

I feel like asshole and addict tend to go hand in hand a lot, I know it definitely did for me. Good for you for finally cutting all ties with him! I'm almost there, but it's just hard to completely do it. You know you should, and that they're never going to change, but something just stops you from doing it completely. (Let's be honest, sometimes that something is when he randomly decides to send you a $100 because he has a sober moment and feels guilty for being an asshole.) I'm getting closer to completely cutting ties though. I haven't seen him in over 3 and 1/2 years now, and that alone feels great. As soon as I start getting an income though, that's when I can finally be rid of him, because that $100 every 4 months won't be quite so enticing.

RamPaige1593 karma

With you being intersex, say a cashier at the grocery store call you sir instead of ma'am. Would you be upset or offended? And just for the record I don't see you as manly. You looked very pretty in that picture.

doct_quinn4 karma

Well thank you for the compliment!

And believe it or not, that's actually happened a few times. I've also been asked if I'm sure I'm in the right restroom when in the ladies room in bars before. I'm not offended, usually just confused. I mean, I have pretty big boobs, and they're generally hard to miss. It seems like a difficult mistake to make.

Dominany2 karma

What is your dream career? Maybe there's a way that Reddit can set you towards that goal.

doct_quinn4 karma

My dream career is to be a comedian of some sort, or at least a comedy writer. My dream job would basically be to work at The Second City in Chicago. It's all I've wanted to do for as long as I can remember.

windrixeville2 karma

I know that there is a lot of controversy surrounding intersex babies and whether or not doctors should assign them a gender and operate immediately.Do you think that it makes things easier to do this, or that it complicates things?

doct_quinn23 karma

Personally, I'm completely against the surgery if it's not absolutely medically necessary. Most of the time with intersex babies, there's no real need for surgery outside of cosmetic reasons. I can completely understand why a parent would want to do it, because no one wants their child to be that "different" while growing up. That's a parent's worst nightmare. But at the end of the day, I feel like it should be the child's choice when they grow up. No one besides you, your child, and their doctor should be seeing their genitals anyway, so there isn't a real risk of bullying when it comes to that. Locker rooms aren't really the same today as they were 50 years ago. It definitely complicates things in a lot of ways, especially when the gender chosen doesn't match up with the identity of the child later in life, and in those cases, you end up with even more surgeries in the long run.

However, I personally have no problem with just assigning the child a gender at birth and foregoing surgery. Let's face it - it's impossible in this world to raise a completely gender neutral child. A lot of languages, such as English, don't really have gender neutral pronouns. And honestly, you're just going to be making life more difficult for your kid if you name them Pat and insist on calling them "ze and zir" for their whole childhood.

So long story short - pick a gender, skip surgery, and be open to the possibility that your child may tell you later in life that they're actually the opposite gender.

Tiggarenstal1 karma

Did you at one time have to decide if you identify yourself as an female or male (for example for a passport etcetera) or the doctors identified you as an women when you were born due to lack of male body parts?

Anyway, interesting AMA and I wish you all the best and I do hope you will have success becoming an comedian. You have one thing going for you, you can make a lot of jokes about male/female life etcetera...

doct_quinn8 karma

I never really had to make that decision, no. I was identified as female at birth, as there was nothing irregular about me as a baby. I can't say that I've ever really felt particularly "male" or "female" (whatever that means anyway) in life, but I have no problem referring to myself as a woman.

And thank you very much! And I always like to say that I'm 75% girl, 25% boy. Although that also means that when my friends host keggers where it's $10 a cup for boys and $5 for girls, I usually have to pay somewhere around $7.50.

amanforallsaisons7 karma

And I always like to say that I'm 75% girl, 25% boy. Although that also means that when my friends host keggers where it's $10 a cup for boys and $5 for girls, I usually have to pay somewhere around $7.50.

Sounds like you have some good, accepting friends who have a sense of humor. Thanks for doing this AMA, I've learned a few things. I find your attitude particularly inspiring, as you're very positive and sharing.

doct_quinn5 karma

Yeah, my friends are pretty fantastic about it all. I've never met a more accommodating and accepting group of people before in my life.

And thank you very much! I try to live my life as open and positive as possible.

amanforallsaisons2 karma

Honestly, when I read the title, I was expecting, I dunno, a WebMD Hypochondriac who picked the coolest diseases to have whinging about their life. Found the exact opposite, hence why I wanted to comment and thank you.

doct_quinn2 karma

Ha, whenever I first start to tell new friends about my various conditions, they assume I'm a hypochondriac as well. But then they quickly realize that if I were to make up fake illnesses, I'd pick much cooler ones. And thank you.

88cakes1 karma

Is there anyone else in your family that has any of these conditions?

doct_quinn2 karma

Everyone on my mother's side of the family has EDS to a varying degree of severity, but I have the most severe of them all by far. Other than that, nope, I'm the family anomaly.

spectraglyph001 karma

Do you hate God?

doct_quinn10 karma

I'd hate him if he were real, heyyyooooo. So much edge.

But honestly, I was raised very secularly and have never believed in God.

underscore_chopstick0 karma

With all due respect, you're on adderall, percocet, lorazepam, neurontin, and ambien: given what I would hope you know about the abundance of over-prescribing these days and given your family's history (drug addict/alcoholic father) do you think these are all.. necessary?

Honestly, almost every single one of these medications seems to have horrible side effects and potential for addiction. Neurontin and ambien do relatively the same thing, for starters. Adderall and lorazepam are polar opposites. Your percocet contains a huge amount of acetominophen which can be extremely toxic to your body, especially your liver if it is having a hard time processing everything in the first place. These prescription drugs are literally a laundry list of what gets sold on the streets today and what can kill. Adderall is quite similar to cocaine, percocet is like heroin (well i'd really say it's the other way around), and lorazepam and other benzos are simply alcohol in a pill.

From one friendly redditor to the next... be careful with yourself, because before you know it, you're going to get up and you're going to "need" every single one of these drugs every single day and, maybe if a doctor decides you don't need one of these prescriptions, you might not have it next month. And if that happens, you might find yourself searching for that feeling again or a way to get there and... addiction is real. As I'm sure you've found out, anything can happen to anyone. Please be careful.

doct_quinn7 karma

Thanks for the friendly advice, but don't worry, I have a pretty good grip on myself. Given my family history, I'm extremely cautious about all sorts of addiction - not that that means there isn't a possibility of being addicted to something at some point in my life. I've stopped taking the neurontin, as that was only a temporary thing to help with nerve pain I was having. The lorazepam I very rarely use, it's basically just for when I'm having a bad panic attack that I can't stop on my own. I don't think I've actually taken one in months. The adderall and ambien I do take everyday, however. With the ambien, I definitely need that every night. I've had terrible insomnia my entire life, and since taking it, I actually sleep every night for the first time in years, so I'm willing to deal with dependance for the luxury of actually sleeping every night. The adderall I take for depression, and it's the only psychiatric drug I've ever taken (and I've tried a lot over the years) that's actually helped in any way. The percocet I know I have to be extra careful with, so I only take it as needed. Unfortunately due to a string of recent injuries this year, that's been almost everyday, but I still never take more than 2, maybe 3 (if the pain is incredibly bad) in one day. I've been taking narcotics pretty solidly on and off for several years, and have yet to have any real problems. I've never abused them in any way, and have never sought any street version. And believe it or not, my liver is one of the few things in my body that actually functions well, so I have that going for me.

Zuperdamn-1 karma

Hello, what's your name?

  • How are you typing this?

  • Do you have any chance to live a normal life someday?

doct_quinn8 karma

Hello, I'm Allison! And right now I'm typing this normally, at a laptop. I can type and do other small things like that pretty regularly, the only exception is when I'm having a particularly painful hand day, or if I've dislocated any part of my hand.

And as for living normally, I sure hope so, but I'm not quite sure at this point. I've tried to live a normal life on many different occasions, but failed almost every time (dropped out of college, etc.). So for now I'm just taking it easy for a while and living back at home while waiting for my social security disability to be approved. I'm hoping that I'll only have to be on it for a few years, and that eventually things will get better, or that I'll manage to figure out a way to make my dream career come true.

xerofailgames-2 karma

um i think ur hot in that pic....would love to see a pic of you not sick

doct_quinn17 karma

I feel like I should be weirded out by this, but I'll take it. And I'll indulge you, so here's a recent picture of me on a horse: http://imgur.com/a/9UgAc

xerofailgames1 karma

lol sorry i have a thing for tom boys lol

doct_quinn1 karma

I'll allow it.

ArnolfHiller-6 karma

How many of each set of genitals do you have? Just one dong and one vag?

doct_quinn8 karma

I have all of the genitals. Multiple sets.