Intersex... or emotionally and physically screwed up?

[Joee]

Hi everyone. My name's Joanna, but I prefer to be called Joee. I'm twenty years old, currently residing in Southern California where I've lived my entire life, but will be moving to South Carolina in the summer. It has recently come to my attention that I may be intersex, although I have yet to see a doctor to prove it one way or another. And from what I've seen in the message boards so far, it doesn't look like seeing a doctor about my case would necessarily even help my find answers either way. Since this theory was brought to my attention, I have been on the internet trying to find support groups, more in-depth explanations that would help me come closer to the truth and most importantly, someone… anyone to talk to who understands my situation. All of these things have been scarce, as I'm sure everyone here already knows of.

Growing up, I guess I not only fit the stereotype of what a little girl should be, but somehow went even over and beyond. Then when I was still pretty young, I changed. Suddenly the girl who refused to wear anything but party dresses was demanding that no one called her cute, getting in fights and bubbling over with rage. I attacked first and asked questions later. When the school tried to blame my lashing out on my mom accusing her of bad parenting (my mom is a wonderful, by the way, more than I could possible ask for), she defended herself by claiming I must have PMS, early puberty and menopause both being a common occurrence amongst women in my family. The school told her there was no way it was PMS because I was too young, but sure enough... at the age of ten before I'd even graduated elementary school, I'd already gotten my period.

The following year, an intense relationship with my best friend had reached a peak. We'd discovered we had feelings for each other beyond any mere friendship when one night, she was reading a fan fiction "novel" I had written and was commenting on what a... dirty boy the lead male character was. So I began to tease her with, grabbing at her thighs while saying that I was him as she squealed in delight. This began a chain of events. Early on while we were still getting comfortable with ourselves and our feeling for one another, we expressed them through these make believe characters and soon the numbers of male charaters I created for her grew and grew. Eventually she started to kiss me as me, not as Darian or Andrew or Josh or Franky or who ever and then plan was for us to go out publicly, that I would tape down my chest and tie my hair back in a pony tail and she would tell people that I was her boyfriend. She was always saying that I could pull it off and would make a cute guy, and I was totally okay with that... proud even. Mind you, I was only eleven and already attempting becoming a "drag king". We were later caught by her homophobic family and threatened that if we didn't knock off the lesbianism then and there, we would not be permitted to see each other ever again. In fear of being torn apart, we vowed to stop, but we couldn't help ourselves. Our feelings were too strong and with that, we buried ourselves deep into the closet until we were concerned that these male characters were real... more real than I was even, that we weren't gay at all. I was merely a portal in which these people from an alternate universe could travel through. I convinced myself that this was my sole purpose in life, that my soul mate was meant to be with someone not of this world and it was my mission to bring him to her. One day, I would give up my life and identity entirely once she found the one who would bring her the most happiness and I'd have a sex change so that they could live happily ever after, without the fear of being accused as lesbians.

I probably come off as being crazy saying all this, but another reason I think I buried myself so deeply into the world we'd created is because she began severely emotionally abusing me. These characters became my escape. I was so in love with her that I didn't want to lose her and convincing myself that they weren't really me made it so much easier to be in denial as to what she was doing to me. She'd grown to hate herself and her homosexuality and took it out on me because she loved me and "I was the only thing standing between her and a normal heterosexual lifestyle".

In the meantime, I had been kicked out of school for behavior problems and had to see the district councilor. At this time, I had been intentionally pretending to have multiple personalities to get attention (this was before my relation with my girlfriend got so scary) and apparently, I'd taken it too far. I was diagnosed with Schizophrenia. These days, no one believes I actually have it, not even my parents who shoved the medication down my throat for seven years, telling me that I could never live a normal life. Another theory is that my girlfriend is the one who had it and because I already was severely emotionally abused as to where I would become that obsessed with her, fed off her energy to create all of this. After all, before we came friends I was just depressed and alone... it wasn't until we hooked up where I became out of control and there was always a lot of talk about her. I don't know... it's hard to say. I'm sure we both have some sort of mental issues, but as to what they are, who knows.

Either way, I was put on some very high doses of medication. Actually, after coming out as a lesbian and my girlfriend dumped me because of it, I attempted suicide and even the people at the place I was hospitalized refused to give me all of it, saying that it was way too much. While on this medication, I noticed that weird things started happening to my body. For started, I stopped having my period. Even two years since I stopped taking the meds, it hasn't come back. Another thing that happened was I started growing access body hair. Now, I'm not talking light, thin hair or a few whiskers on my chin or something, I'm talking thick, full-blanketed coarse hair covering just about every inch of my body, more than even the men in my family have. I also lost my libido and all feeling in my vulva, which I know had to be due to the medication. But when I took these issue up with my doctor, I was first made fun of for using the word "libido" and shamed that I was only a teenager and concerned about the loss of my sex drive, when I apparently shouldn't have had one in the fist place, right? :pissed-2: As far as the loss of period goes, she said that was normal and also asked if I was lactating, in which I was but not enough as to where I'd need breast pads. So obviously, it's known that the medication was doing something to my hormones. But when I brought up the hair problem with her, she told me that it wasn't a side-effect of the medication and I probably just had high testosterone.

Now as an adult, I go to my new and improved doctor with my physical symptoms and she thinks they're all caused by some sort of cysts on my ovaries, but because I don't have medical insurance and the tons of tests I need to have performed to find out for sure are quite costly, she sends me home and tells me to come back once I have my insurance. Of course, at that time we thought I'd becoming back in a couple weeks, but then something serious came up with my brother and long story short, I won't be able to have my test performed until after we move.

So it would seem that my questions have already been answered, minus the fact that we're still going on theory and nothing has been medically proven, but here's the real dilemma: a part of me has never really felt entirely female and emotionally speaking, I think I may be part 'man'. Five years have passed since my Parker-Hulme-esque relationship and I'm totally over her and the life we lead, and I am now out and proud of who I am. Not only do I wear my heart on my sleeve and embrace all that I am, but I also help other people discover who they are, mentoring people both my age and younger. I have no desire whatsoever to fall back into that lifestyle. It's my past and I'm not ashamed of it because everything we live through is a learning experience, but I am by no means proud of it or miss it any way.

Why then of all things, do I miss this sort of mental-extension of myself? I'm not even a butch. For the most part I’m pretty "girly" and people always tell me that I am. I guess I just chalked this feeling up to my relationship and these characters being such a big part of my life that I would naturally feel some sort of loss with them, but I don't really think that's it. I feel that I've gotten my closure with these characters and I could care less about them. Even now as a writer, I couldn't resurrect them if I tried. Then factor in the body hair and loss of my period... was this really caused by that medication, or did my body just transition from female to male puberty on its own?

I don't expect anyone to have all the answers I'm looking for, but I would like to have a second opinion from someone who actually understands what it means to be intersex. I basically just want to know if you think I'm really intersexual or if my physical and emotional state are just out of whack because of the things I'd been through in my part. Anyway, thanks for taking the time to read all of this and for any input you can give me. It really means a lot. I'm sorry this post was so long.

[Peter]

Hi Joee,

Welcome to Bodies Like Ours. Thanks for your thoughtful post. Contrary to what you might have gathered from other posts that have described difficulties with doctors and diagnosis, you should be able to find an endocrinologist or gynecologist who can help you explore your personal issues. There are intersex related conditions that come to mind when reading your story but I should not say anything further. There are also other trans and gay themes that come to mind. You titled your thread "Intersex... or emotionally and physically screwed up?" That brought a smile to my face, because it implies a positive valuation of "intersex". But beyond my initial reaction, you don't strike me as emotionally and physically screwed up, but rather as an intelligent and honest person.

Peter

[Betsy]

Hi Joee,

No one can really diagnose with "intersex" for a number of reasons. The biggest of course, there is not a medical pathology/diagnosis of "intersex". It's simply a word that is used as an umbrella term and covers lots of different diagnosis' and things that can happen. As much as we 'dis' doctors in the intersex community, the fact is, only a doctor can diagnosis you with some type of intersex condition.

I'm curious about how it is it may have been suggested to you that you are intersex?

I don't think you are "out of whack" emotionally nor disconnected from what you call the "mental extension of yourself". In fact, reading your post, I see someone totally opposite who is very clued into yourself with a firm grip on reality.

On the cysts, body hair, lack of menstruation, libido issues, you may want to find out more information about late onset congenital adrenal hyperplasia (LOCAH). It is an endo that would test for that stuff. I realize you don't have any insurance but maybe there is a low-cost clinic you can go to where you live?

There is a good deal of debate about whether LOCAH is an intersex condition. Some medical types include but far more do not. However, I think it tends to run analogous to the severity and also most importantly, self-identification.

On the gender androgyny issues you write about...dunno. Lots of people with no type of intersex are androgynous or trans in some way. Lots of people with some type of intersex are and but most are not.

With the meds you were given previously, you may want to post what they were/are because there are some really smart people about chemicals and particulary side effects here. I am not one of them.

Betsy

[Joee]

Well, basically the short answer as to how it was suggested to me that I may be intersex is when I posted in my personal blog a simpler version about how I don't feel that I am entirely female emotionally and went on to say that I didn't know what the cause was, if I was born like this or if it was caused by my environment and lifestyle growing into adulthood, or if perhaps it's due the testosterone over-powering my estrogen caused by the medication I was put on during puberty or maybe it's a combination of all of the above, and one of my readers suggested this to me. At first I was hesitant because any time I brought the issue up with someone else, it was pushed aside and someone always had some other theory for my emotional and physical being. Then I started looking into finding more information and found that it may well be possible, but because I couldn't find any more descriptive details, couldn’t really find much of anything. Still, due to my masculine development, I’ve always kind of felt this way emotionally, but my mom said that it was probably just dealing with the body hair that was screwing with my mind. Course until I saw that story on In The Life, I wasn’t too familiar with intersex and didn’t have anything to go by.

I see that everyone keeps saying that you can’t actually be diagnosed with intersex and I have to wonder then, how do doctors know? It’s apparent that some types are easier to find than others, but can they find any evidence if it’s not quite so prominent, or do you just have to go by theory? I mean, I went through a heck of a ringer trying to figure out rather or not I was Schizophrenic and I don’t believe they ever found exactly what it is they were looking for, so they just assumed I was and heavily medicated me anyway. To this day, I’ll probably never know, but because I lived under the assumption for so long, I still claim to be one and use my experience to bring a positive light to the “mentally disabled” community I come from.

I will look for more information on LOCAH and try to get to a doctor as soon as possible. My mom suggested that I may be able to get a temporary HMO, but that may cause other problems because I would start the beginning of my tests here and then continue after I move, and I’d have to deal with a lot more than I would if I just had one place taking care of everything. I already have to go through a series of other tests to see what’s going on with me. I originally thought I had cancer, but because the pain in my ovaries died down with mere ibuprofen, I’ve kind of ruled that out. Either way, I still need to go through all those tests and I guess now, this will just be part of it. The most difficult thing I guess is not knowing how many of my problems are actually linked together and to what.

I actually don’t remember all the medications I was on exactly, but I’ll try my best. The first thing I was on which I think I took from the time I was eleven until my mid to late teens was Risperdal, and then I also took some depression medication mixed in, Paxal and I forgot the other one… I don’t think it was Zoloft. Either way, they had a reverse affect on me, so I was taken off the first and put on the second which did the same thing. Then for the last few years until I was 18, I was on Depakote, Neurontin and Lorazepan, which I don’t even remember what each of those things were for.

And as far as what Peter said, "Intersex... or emotionally and physically screwed up?" That brought a smile to my face, because it implies a positive valuation of "intersex"… yeah, I know… I’m an optimist. But actually I personally don’t think that intersex constitutes as being screwed up because it’s something you’re born with. Being ‘screwed up’ is something that the outside forces do to you. I’ve known lots of different people who have been mentally or physically ‘flawed’ so to say, with various different outlooks on life and themselves, and this is what I’ve come to believe. I also believe that even if one does get ‘screwed up’ by someone else, we just need to work with what we have and accept ourselves for who we are, because even though we’ll never be… well, ‘pleased’ with the situation (for lack of a better word), we can’t take back what’s been done to us and we just need to live our lives as fully as possible.

[Az1]

I am Az1,
pondering your question as to who you are.
this will drive you insane trying to find out why is ther so much incertainity in your life.
I have looked a lifetime for answers as to why.
When growing up I knew I was not male nor female but i knew something was wrong. I wanted to be what i thought i was and i was told to be a gender and not be a sissy. Not to be who I wanted to be.
I am too this day tormented for being who I am.
I talk to people about it and it seems like they do not want to understand that there is indifference in their world.
I have a couple of people who want to know more and when I tell them they think I want to be a gender, wow we get a choice.I would not focus to much on trying to figure out how many sand pebbles are on the beach your answers will come.

also pondering as you say someone to talk to about this way you feel.
You have found a great site on the IS issues of life.
I found out what I was, yes it has explained to me the ? why.
I have kicked the can and moved on.
I am IS I have both female and male gender that exist in my world. My innerself and body is all the answers I need.
I hope you find the answers you seek as we all do.
have a Nice day.

Az1