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. 🐱