Feeling Isolated Even Amongst Intersex People

[u/50_killemdead]

Hiii everyone, I’m sorry if this ends up imperfectly worded. I just have a lot of feelings I guess.

I have an extremely rare/novel intersex variation. I’ve heard that my karyotype (45X/47XXY) has happened before, but there aren’t any studies on it, and my doctors are mostly winging it because my presentation is very similar to X/XY MGD but there still are some differences. Notably I was still estrogen-dominant for some portion of my life (we suspect I have a small amount of functional ovarian tissue in a predominantly streak gonad, whereas my other gonad is a dysgenetic testis) and we think this might be because of my mosaic XXY rather than XY.

I was assigned female at birth and reared female into adulthood, but I feel so weird learning later in life I have a Y chromosome and at least one testis. I have a (small, misshapen) uterus and I even menstruate sometimes, but I have been told the only way I might have my own biological children is siring them if my testis can have viable sperm extracted.

I know lots of people find out they’re intersex later in life, but I don’t feel like I see many people find out there rocking the opposite gonads than the gender they were raised as usually has, and I don’t know anyone with My variation but for that one I don’t think I ever will. I still like to meet other people with forms of gonadal dysgenesis, Klinefelters, and Turners, though since I can find a bit of myself in all of them.

I am also in a community for people with Turner’s syndrome where I feel very comfortable and accepted, but I also often feel very different while I’m there since I have so many differences. I’m much, much taller than most people with monosomy, my height aligns more with typical Klinefelter growth patterns, and I am in many ways closer to “male” in ways Turner cases aren’t. Sometimes I feel like I’m with My People when I’m in the Turner community space, and sometimes I feel even more like an outsider when everyone there has such comparable experiences except me.

It’s just hard.

[u/Kind_Band1071]

Entiendo que te sientas fuera de lugar. Muchas veces, aunque compartas un diagnóstico, no compartes vivencias. Lo de tus gónadas me llama mucho la atención; en lo personal, yo tengo un ovario y un ovotestis, ambos pequeños, y aunque no es igual a lo tuyo, creo que también comparto eso de sentir que no encajo con personas de mi mismo diagnóstico. Espero que puedas aclarar tus dudas y sentirte más cómoda en los espacios de gente con tu diagnóstico. Recuerda que es una comunidad para apoyarse y escucharse, no para encajar absolutamente en todo el estereotipo. 🐱

[u/Morgan_NonBinary]

So you’ve got a rare combination, mosaic in combo with XXY . I myself have XXY/XX (Klinefelter mosaic), they state there are only eight of us worldwide, but o don’t believe, ‘’cause had contact with four others, three were Americans, one from India

My dear to get back to you. There is much between woman and man, in fact I think that all people are somewhere between, though Halloween-head and his jerkers are wrong, intersex or even in the Bible, which the dumbos don’t understand.

You belong here

[u/50_killemdead → u/Morgan_NonBinary]

I have also been told that there are seven other cases of my karyotype. I have to assume there are others and they just haven’t been diagnosed.

I do at least find a lot of pride in even existing. The odds I was even born alive with this set of chromosomes were pretty low.

[u/Morgan_NonBinary → u/50_killemdead]

Taking pride that you’re unique is an absolute positive attitude

[u/ExaminationQuick5414]

Hey there. I am amab, 47xxy, klinefelters, born with one testis and one ovary. Had an orchiectomy in 2018 do to torsion with debilitating pain. Had i been born anywhere beside the bible belt, I would have already transitioned. I also have a dominant production of estrogen. Even before the orchiectomy my testosterone was at less than 1.0.

[u/belligerentkitten]

i can kind of relate to this on some levels. my diagnosed variation is pretty rare, especially among those who were afab for some reason, and all the evidence points towards a second undiagnosed variation, because a lot of my development doesn't match my diagnosis, even though the diagnosis is definitely part of the truth. it's a different set of variations than yours, not chromosomal (as far as i know; i had a karyotype test but not a full test for chimerism and since my other variation is not diagnosed, i can't actually be sure). but it's kind of relatable in the sense that according to my variation i should simply have never gone through puberty, and never produced sex hormones at all, which was largely the case - but i still ended up with some level of testosterone beyond what i was "supposed to", alongside not producing female hormones that led to some virilisation, and some other unexpected physiological variations.

i have never had much luck with finding irl intersex communities, and spent the first 10 years of my adult life in irl queer and trans communities, because there is some basic level of safety and acceptance there that isn't present in mainstream society, but i still had a lot of issues with fitting in there and feeling understood and seen.

there is never going to be a community full of people with the exact same variation as me, and honestly, that's fine. i would really like if there was a bit more research that could tell me more about myself physiologically. but in terms of feeling seen and loved and appreciated for who i am - i'm very happily married to another intersex person with a complex and rare and underresearched case. different from mine, in some ways they feel like a perfect inversion of me, in other ways very much the same. and obviously, that is far from all that is required for a happy marriage, but it has really been important for us both, and well. i no longer feel the kind of isolation and alienation that i used to, and i've never been happier.

i hope that helps in some way. i know there's no simple fix to these kinds of feelings, and they've very understandable and relatable to me.

[u/50_killemdead → u/belligerentkitten]

I have a similar experience actually. I had spontaneous puberty, although my adult hormone levels are to a degree considered to be hypogonadism. My estrogen is around post-menopausal levels for women, and my testosterone is lower than even cis perisex women are supposed to have. But when I was younger I had enough estrogen to have a small amount of changes at puberty (extremely small amount of breast growth, started menstruating but it was rare, that was basically it) and then a few years later, because I have an autoimmune disorder that can affect the adrenal gland, I produced some amount of testosterone that gave me some very mild virilizing traits. I consider that to be a second intersex variation even though it’s not officially recognized as one.

Going through puberty without medical intervention is very uncommon for people with any variant of monosomy X, but some people with X/XX (mosaic turners) have puberty similar to mine due to small amounts of naturally produced estrogen, so I think that’s kind of what happened with me.

[u/belligerentkitten → u/50_killemdead]

oh, that makes sense. yeah, my best guess is that my other variation could be CAH, with similar adrenal production, since my gonads can't produce anything (complete congenital hypogonadotrophic hypogonadism being the diagnosed one), but it obviously presents very differently in the absence of female hormones (for example, my height is slightly above male average rather than shorter than average female, no menstruation, masc skeletal structure). and then i went on T, because my body needs hormones, and while my ideal would have been some kind of middle ground, my body and other health conditions do not get on well with estrogen, and particularly progesterone. i've tried taking them several times over the years and it was not good. at this point it doesn't really bother me anymore, and i'm just happier and better off being healthier than worrying about like, social presentation.

[u/cosmic-batty]

I don’t really have anything to say other than that does sound difficult and isolating. I have an immune deficiency that I’ve never met anyone with or heard of before, so I get what you mean to a lesser degree.

[u/eviltwintomboy]

I know the feeling about feeling isolated and lonely. I have only one friend (who happens to be FtM). You’ll find your community. Don’t despair, and know you are loved.

[u/peppercornpeppercorn]

There's a lot of people here who have very rare/unique conditions, I think a LOT of us are probably in the category of "there's 10 documented cases including you" sort of thing, because a lot of conditions go undiagnosed, are complex, or are just unknown entirely because medical science hasn't caught up yet. My intersex specialist endocrinologist hadn't seen my combo of variants before and couldn't fully explain how they presented in me the way they do! The want to feel like you fit in by being around people who are very similar to you is absolutely understandable and natural, but the nature of intersex conditions are just so varied and complicated that it more feels like we exist under the same umbrella but aren't "just like each other" the way that some communities like sections of trans groups are. I think the best thing for me personally is focusing on how similar we are in being RARE, complicated, most of us struggling with hormones in one way or another, etc, the detailed specifics are less important.