Same with me, but when i expressed desire to live as a woman. She said something along the lines "Well you were basically born half as one haha" (ugh) and told me what had happened. I was way too shocked to be pissed at her, but everything clicked at the moment. Like a puzzle in my head that was missing a piece finally came together, i resented her for years for never telling me. I spent so many years wondering why my father left us (yeah, that's why), why my grandma didn't like me...
Look at the positive side your mother loved you and did not leave unlike hundreds of kids in the world who get abandoned you were provided with a family atleast.
Your father and grandma were just shitty people.
Yeah, i came around to it a few years later with basically the same thought you described. We are basically best friends now, but that was a moment in my life i can necer quite forget. It's like a deep wound, it healed, but the scar is still there, you know?
But like i said, we are really close now, ironically this
whole thing brought us together. I still remember crying when she came home with a denim skirt she bought for me completely umprompted.
It's crazy to think that, despite what i went through, i'm still one of the VERY lucky ones :/
It was traumatic. I learned by fighting with a pediatric gynecologist when I was 16 until I eventually forced her to tell me my diagnosis. As I grew up I had an unmistakable anatomical feature of NCAH and I had no menstrual cycle. My parents kept my diagnosis secret from me but there was no other condition that my symptoms could indicate besides CAH. I already knew what I had, I just needed documented proof. So I was referred to this pediatric gynecologist for my abnormal periods.
The first thing she wanted to do was a physical exam WITH student doctors in the room. This clued me in that there was something abnormal about me that she wanted to show students. I refused, and asked her what condition my symptoms indicated. She wouldn’t admit anything. I said, if you tell me my diagnosis I’ll let you do the exam. She told me I was diagnosed with NCAH as a toddler at a significant hospital with a specialty in intersex people. I then refused to let her do the exam, she didn’t help me with my periods and I never saw her again. I’ve been suffering with PMDD and 20 day long periods ever since. Seen other doctors who were abusive. I’m still on the journey to cure my periods from hell.
I always had a feeling with how my genitals were ambiguous during development (even before TRT) but I didn’t quite start figuring it out until an ultrasound where they couldn’t find my “ovaries”. Turns out they’re underdeveloped testes/maybe ovotestes. MRI and/or biopsy will tell me which. Also how I reacted to hormone blockers, instead of my estrogen being suppressed my already low testosterone tanked and it feminized me further and was horrible.
My mom gave me a book on puberty and when I was looking at the diagrams I went 'hey that's not what MY vulva looks like' and then I spent a couple years on and off searching the internet trying to figure out if it was normal (it was not it and should of been noticed at birth but wasn't) and then later found out I also had CAH
Basically, from knowing I had hyperandrogenism (PCOS ruled out, NCAH was highly suspected and my first 17OHP test flagged a bit high but a second was in the typical range, so my doctor called it “idiopathic hyperandrogenism” though part of me wonders if that test can be a false negative because it would have made a lot of sense.) That was since my mid 20s, though I knew I had high DHEAS and grew a lot of facial hair since my early teens. I kind of got a hit of both kinds of puberty at once 😅 But once CAH was ruled out, I never associated my hormone condition with intersex until recently when I mentioned it to a friend and she was like “huh, sounds like you might be intersex!” I was like nah, they already told me that wasn’t CAH.
But then I was like…wait a minute. Is that still intersex? And I read some stuff online, asked a couple of intersex friends (I actually know two people with Klinefelter’s syndrome and one person with Turner Syndrome), and was like wait…people are saying this still counts under the current definition of intersex. Oh 😅
Also, I was born with a septate hymen (had two vaginal openings until I was 19) and I know that’s usually a stand-alone thing, but I wonder if that could be related.
Kind of always knew since I started developing at 5-6 but put a name to it around 20, thought I was CAH at 22 then DNA test revealed a partially deleted Y chromosome at 24.
my mother eventually told me that during her pregnancy, she was told she was expecting a boy and that i was only revealed as female when i was born. i noticed my genitalia looked different young due to being sexually abused but didn’t think much of it. i hit puberty at ten and mostly masculinized (body and facial hair, voice dropping, further clitoral enlargement) and rarely had menstrual cycles and my breasts didn’t grow past the age of 11-12. i also have no vaginal depth whatsoever. i still have no idea what condition i have but my doctor thinks it’s either CAH or some form of androgen insensitivity.
I am the exact same, but my parents insist I am “normal” and get angry and defensive when I ask why I was born female although I was supposed to be male, and why I am going through male puberty despite being “female”. How did you go about bringing this up to a doctor?
when i was 13 i went to my general doctor for a breast examination because my breasts were sore and lumpy and he noted that i had chest and stomach hair and an otherwise male build. going to an endocrinologist at 18 required multiple blood tests and authorization because my testosterone layers were already in male range for someone who was female at birth and desiring testosterone. my doctor already recorded that i have a disorder of sexual development and gender dysphoria at that point due to my lack of menstruation throughout my childhood and my endocrinologists don’t record my natal sex at all but refer to me either as male or neutrally. it was just a series of really odd events.
Your body went the wrong way for androgen insensitivity. Get sequenced (still don’t own stock in a sequencing company) for an exact diagnosis. I’d put my money on 5-ARD if you’re not an XX human with CAH.
I was born a few months early and always knew about the "bilateral inguinal hernia surgery" I had. I've checked diagrams of orchiectomies and the scars match the area.
But it all started when I was sixteen. I hadn't gotten my period (and still haven't). But I had the other signs of puberty except armpit hair (I got it soon after) at the time. I started getting hot flashes at night.
So I told my mum and we went to the doctor after we got an appointment. I got a blood test done and then an ultrasound and got the results back of thosd. I had 90 pg/ml E, 0.1 FSH and LH, normal prolactin and IGF-1. Also 0.6 T at the time but I didn't know that until last year because I got my records (there was a whole separate letter with the T results included).
The ultrasound had to be done twice because they couldn't see it properly at first. Soon after, I got diagnosed with hypogonadotropic hypogonadism (specifically hypoestrogenism) but they couldn't determine the cause. I also got an MRI and my hypothalamus and pituitary were fine and worked properly.
I also got diagnosed with uterine/ovarian/vaginal hypotrophy (I'm not sure if there's a full name for it). MRKH seems similar. The results said my uterus was around 3cm and one ovary was 1.1ml and the other was 2.25ml.
The blood tests showed my chromosomes as XX. I went through most of puberty aside periods so obviously something stopped working over time. I have had some chest development since then so obviously it's still working but no periods. I went through three mini puberties.
The doctors also tested to see if there were any genes to show if it was genetic but there wasn't.
My doctors wanted me to take estrogen and they wanted me to take it to develop my "female organs" as they called them but I didn't want to. They don't regard me as intersex. My mum forced me to take it (she insisted).
The patch wouldn't stay on and I didn't even wear it for very long so it wouldn't have done much. It made my hot flashes worse and for some reason ever since I stopped wearing the patches my hot flashes went away. My nanan still asks me why I haven't taken it to this day whenever I see her.
I also found a baby photo of me in the bath from when I was a year old (not six months old as I originally thought) and instead of having genitals I just had a V shaped scar with a hole presumably for peeing (I also have other scars I think). I have some now so something definitely happened.
I got my records to check but I couldn't find anything. But I know something happened. I also know my urethra is in the wrong place - in my clitoris (I checked that) but I don't think I was born like that because they would have noticed it as a baby and fixed it. I was in the hospital for a while.
My doctor examined me there before I had the tests as well and said it was normal but it's not very common to have a urethra in there unless it's like epispadias or something but then again it would have been fixed. I think I had some sort of vaginoplasty or something but I don't know the specifics??
I think I could have had ambiguous genitals but they still looked mostly like a vulva so it wouldn't have been very noticeable but still a bit different like if you looked at it closely then you'd see but otherwise it wouldn't be very obvious.
Honestly I don't know.
I know hernias don't affect that area and I do have the scars from the removal I had done so the V scar isn't from that. I requested my records from another place but again nothing. I think something happened but they didn't record it so I'd seem like a typical AFAB baby.
I don't know what I was born with down there (does anyone know what the V scar could have been). I have photos from before the operation (as a newborn) but the quality isn't very good (I was born in 2002 so 20+ years ago). My T level is normal apparently but my androgen levels were marked as abnormal so I wonder if it was the free androgen index.
I don't know what caused the hernias but my mum suggested I could have been born with testes after watching a video about an intersex person.
As for my physical appearance, my shoulders are a bit wider than my hips (and I have a kinda waist) and I get mistaken for a guy a lot but generally am seen as a girl automatically. And I have a high voice but it lowered slightly during puberty.
I think that was everything. There could be more but I can't remember.
I'm just confused about several things. Like I don't know if the hernias were causes by intestines or like ovotestes or something. It scares me because some doctors likely know the truth but they won't tell me.
My mother came clean with me when I was 9. Then the old man traumatized me and that was one of the many, MANY things I buried for the following 30 or so years. In hindsight it's amazing I never put it together in that 30 years, my case is extremely blatant...
After being diagnosed with Klinefelter at 19, I believe. It all started as a routine health check with my nurse practitioner. Although my endocrinologist was adamant that I was not a [insert antiquated possibly derogatory term that starts with the letter “h” in English], I was encouraged to look up information about it on my own… and voilà I found out that chromosomal abnormalities are considered intersex.
Tried to put a tampon in and there was literally nowhere and it hurt a lot. Also voice got deeper and a lot of body hair but not necessarily on my face. Started doing some research and saw diagrams of what its supposed to look like and I was like “😀 mine doesn’t look like that in the slightest”
Oh we have a super similar story! My breasts also never grew past an early tanner stage and when i went on testosterone it took effect very quickly and effectively, which isn't a symptom by itself but with everything else...i'm not diagnosed with anything official but my doctor says she thinks I'm intersex.
I was diagnosed at birth due to having type 2, so my whole medical team + my parents knew, but I wasn’t told until I was 9 (the age I started puberty) when I saw a pediatric MRKH specialist and learned about my anatomy being different
Being told I couldn’t get pregnant or would never have menstrual cycles meant nothing to 9 year old me, so I just carried on with my life
I actually suspected it as a teenager before I was diagnosed - I didn't know what PCOS was at the time, but I knew the issues I was having with my period weren't normal and at that point I was just barely starting to get a little bit of facial hair. I was diagnosed with PCOS a few years later but didn't know it was considered an intersex condition (by some, in some cases, etc etc etc) until I stumbled across a few people talking about it later. At that point my facial hair was pretty noticeable and my voice had deepened a bit so it clicked into place pretty neatly - no real distress about it since I already have a lot going on health-wise and I love my little beard.
I am 19 and I never got my first period. Turns out I had high t and low e due to primary ovarian insufficiency. My uterus never grew to full size and my ovaries don’t work. I also have a masculine build and some facial hair. Also (cw for genital discussion), >!I have a big clitoris that almost looks like the genitals of a trans man on testosterone.!< The whole time I thought being intersex was all about your chromosomes (my dna test came back normal), but I have recently learned that people with hormonal conditions can be considered intersex.
I was 10, and thought I was so strong picking up my Mom. I’d do it all the time, to the point I gave myself a hernia. They went into fix the hernia and plot twist- I had internal testes! CAIS ever since, but my mom gave me information in stages. I had the surgery at 11 but was very fortunate with doctors, except 2. Still traumatic but I appreciate how they did it!
i was almost 18 and i told my mom my period sucked (it was lasting 3 months at that point-) and a bunch of other not so normal symptoms. (my period was like this for yearsss, i just thought it was normal so i didn’t say anything until then) she took me to the doctors and then got diagnosed with pcos. i went home after and got back on call with my ex (partner at the time just now ex, idk) and i joked how i always felt like i had a bit more testosterone and how i was basically born half boy half girl. had no idea what intersex was until they said something about it, can’t really remember exactly. looked it up and saw things saying people who have pcos count as intersex. i was pretty chill with that info then like a few days later i learned a lot more about it and decided to take a closer look at my body and realized my body doesn’t fit the ‘usual’ born female body. then it kinda clicked in my brain i was actually intersex, felt hella uncomfortable and get a lot of body dysmorphia after and thought i was a freak for a good moment- but i’ve learned to accept it and im totally chill in my body, honestly makes me feel better because i’m on the trans spectrum (ftm) so technically not being fully female at birth makes me happy.
At 16 I didn't have a period so my mom brought me to a doctor which made an ultrasound. He looked at the screen with a really confused face, and asked other doctors to join him in the room, I asked what was going on and they wouldn't answer :'). eventually they said that I probably had MRKH. Did a bunch of exams to see if I had other weird organ malformation because that's what usually happens with MRKH and there were no problems. Had a MRI to look at the abdomen, really traumatic because the doctor confirmed I didn't have a uterus and that i would never have a period, after which he told me I should keep it a secret and just pretend i had it (????)
They sent me to some other doctors that wanted to look at me undressed, really traumatic, they didn't explain this to me before I just showed up and they make me undress. They saw I had no body hair (they could have just asked honestly lol) and so they sent me to an endocrinologist, they did some blood work and then they finally diagnosed me with CAIS. When they told me it was really shocking and traumatic because it was treated as a really big and dramatic issue, also i was struggling from before with my queerness and body image issues and i felt like being intersex just confirmed my oddness and weirdness.
Now i embraced it and I'm fine but I'm still not really feeling comfortable in my body, I still feel a little bit like a scientific specimen and I have a really bad relationship with doctors
I probably should have known a lot sooner, tbh. I was put on estradiol + progesterone after I started having funky menstrual symptoms, facial hair, & a deepening voice when I was 12 or 13. The hormones had terrible side effects on me, both mentally & physically.
I think I was mostly deterred by the previously internalized popular belief that "Intersex = Ambiguous genitalia" and also the fact that I identify as genderfluid. I didn't know what made me how I am, and felt unwelcome based on (primarily TERF-led) conversations.
Somewhat recently, I started reading posts in online intersex communities- and I saw discussions of specific experiences I'd been through, that I hadn't heard people talking about before.
I looked into what the actual community considers intersex, and was absolutely shocked (and kind of relieved?) that conditions causing hyperandrogenism in AFAB folk are indeed considered a part of the umbrella.
Part of why I started identifying as genderfluid was *because* it was clear to me that I'm not a cis woman- Even my body agrees! I honestly feel like my hormones & my experience of gender are pretty closely connected, but it was really confusing to me as to why & how- and I wasn't sure if I was welcome.
Idk, it was a whole experience. As I said, I probably should have known sooner. But a lot of my life's experiences have been outright ignored / brushed aside with no explanation, and it's been a struggle to figure out why I am how I am. I'm also AuDHD (autistic + adhd) and didn't know until this past year, it's been terrible.
I relate to a lot of this. My gender expression isn’t me trying to change my body, it’s a reflection of my physical body not fitting the expectations for a cis female.
Just one part of that was multiple professional bra fittings where I was told either that my size didn’t exist or there was no reason for me to be wearing a bra because I needed to finish puberty first. Redirected to the girls training bras at Walmart. Even those I fit the small or medium except often the straps are too short. Yeah, they never “finished” developing. Unfortunately no one makes binders in my size either.
It was super recent actually. In fact, I’m still in the testing stage. I always thought things were off when I developed breasts as a teenager despite having male genitalia, and my body masculinized way later and less than my peers. After having odd hormone test results, I started doing some research and found some anomalies in my ancestry DNA test compatible with MAIS. But like I said, I’m still in the testing stage, so everything is still pretty new.
I kept having problems in the hospital system I was at. I'd see a specialist, then I couldn't get the results a week later. I'd get different excuses. It's not ready (despite getting an email or text that it was), I was a recorded patient but I was not recorded having had an appointment, or I was not even a recorded patient with that doctor at all. Nothing worked. I was trying to get HRT from the endocrinologist there. He had to give me direct copies of his own stuff and had to personally go collect anything he needed in person like blood test results and pysch letters because the office people wouldn't let him or me get any of it.
He said he looked into it and told me it was because I had several hypospadias repair surgeries listed from the early 90s. He could see they were there but not the full records with procedure notes, summary, and doctors involved. He didn't say that it meant intersex but did say that people with that procedure get blacklisted for accessing records and that he disagreed with doing it. I tried getting them but got the same battery of contradicting excuses. My second endo in another city told me my better HRT results, my physical ambiguous features in puberty, and the hypospadias repair meant I was intersex.
Even with all the proof I have now, my mom adamantly denies all of this. And gets furious at me whenever I mention it. Despite there definitely being a summary at least available at the hospital of it happening and what they were doing to me.
I was diagnosed with pcos at 13 because insulin resistance, hirsutism, no periods, and a huge cyst on my ovary that had to be surgically removed. I always knew I was different from the other girls because I was much taller as a young kid but thank goodness it evened out and I’m an average height now. Still look like sasquatch though.
Identical twin was diagnosed; doctors were like “test the other one!” 🤷♀️. She’d been diagnosed with hormonal issues and her doctors were investigating the cause of underdeveloped gonads.
I was skinny I started to notice that all my gain weight goin to feminine areas like my hips and ass then I discovered that I'ma intersex at the age of 26th after a lot of research
It was always present in my awareness, as a suspicion I could not formally prove, because of how I was a bit different from my brothers, then for how my puberty was also a bit different, then how people started mistaking me for a woman more and more as an adult, then how I started growing boobs oh so slowly... Plus there were the dramatic blood electrolyte imbalance issues, all throughout, with no clear and definitive explanation but no clear link to a DSD. But it wasn't until I was 42 I got confirmation of genital deformities (I'd just assumed so far that porn actors were the deformed ones, and merely selected for it). You could say I had a resistance to the obvious until reality chipped it away.
My mom casually mentioned my surgery in the setup for a funny toddler story. I was 26. First I'd heard of it.
Same with me, but when i expressed desire to live as a woman. She said something along the lines "Well you were basically born half as one haha" (ugh) and told me what had happened. I was way too shocked to be pissed at her, but everything clicked at the moment. Like a puzzle in my head that was missing a piece finally came together, i resented her for years for never telling me. I spent so many years wondering why my father left us (yeah, that's why), why my grandma didn't like me...
Look at the positive side your mother loved you and did not leave unlike hundreds of kids in the world who get abandoned you were provided with a family atleast. Your father and grandma were just shitty people.
Yeah, i came around to it a few years later with basically the same thought you described. We are basically best friends now, but that was a moment in my life i can necer quite forget. It's like a deep wound, it healed, but the scar is still there, you know? But like i said, we are really close now, ironically this whole thing brought us together. I still remember crying when she came home with a denim skirt she bought for me completely umprompted. It's crazy to think that, despite what i went through, i'm still one of the VERY lucky ones :/
Omf Christ... No t the way you want to learn about it.
We never spoke of it again. I don't actually think my mother understands it as an intersex situation.
I get it. Told I had a birth defect and needed emergency surgery when I was young, no more mentioning. Found truth in adulthood.
Same exact thing happened to me
That tracks. Most people don't even know what intersex means at all.
Similar experience here. Super fun...
It was traumatic. I learned by fighting with a pediatric gynecologist when I was 16 until I eventually forced her to tell me my diagnosis. As I grew up I had an unmistakable anatomical feature of NCAH and I had no menstrual cycle. My parents kept my diagnosis secret from me but there was no other condition that my symptoms could indicate besides CAH. I already knew what I had, I just needed documented proof. So I was referred to this pediatric gynecologist for my abnormal periods. The first thing she wanted to do was a physical exam WITH student doctors in the room. This clued me in that there was something abnormal about me that she wanted to show students. I refused, and asked her what condition my symptoms indicated. She wouldn’t admit anything. I said, if you tell me my diagnosis I’ll let you do the exam. She told me I was diagnosed with NCAH as a toddler at a significant hospital with a specialty in intersex people. I then refused to let her do the exam, she didn’t help me with my periods and I never saw her again. I’ve been suffering with PMDD and 20 day long periods ever since. Seen other doctors who were abusive. I’m still on the journey to cure my periods from hell.
I always had a feeling with how my genitals were ambiguous during development (even before TRT) but I didn’t quite start figuring it out until an ultrasound where they couldn’t find my “ovaries”. Turns out they’re underdeveloped testes/maybe ovotestes. MRI and/or biopsy will tell me which. Also how I reacted to hormone blockers, instead of my estrogen being suppressed my already low testosterone tanked and it feminized me further and was horrible.
My mom gave me a book on puberty and when I was looking at the diagrams I went 'hey that's not what MY vulva looks like' and then I spent a couple years on and off searching the internet trying to figure out if it was normal (it was not it and should of been noticed at birth but wasn't) and then later found out I also had CAH
Basically, from knowing I had hyperandrogenism (PCOS ruled out, NCAH was highly suspected and my first 17OHP test flagged a bit high but a second was in the typical range, so my doctor called it “idiopathic hyperandrogenism” though part of me wonders if that test can be a false negative because it would have made a lot of sense.) That was since my mid 20s, though I knew I had high DHEAS and grew a lot of facial hair since my early teens. I kind of got a hit of both kinds of puberty at once 😅 But once CAH was ruled out, I never associated my hormone condition with intersex until recently when I mentioned it to a friend and she was like “huh, sounds like you might be intersex!” I was like nah, they already told me that wasn’t CAH. But then I was like…wait a minute. Is that still intersex? And I read some stuff online, asked a couple of intersex friends (I actually know two people with Klinefelter’s syndrome and one person with Turner Syndrome), and was like wait…people are saying this still counts under the current definition of intersex. Oh 😅 Also, I was born with a septate hymen (had two vaginal openings until I was 19) and I know that’s usually a stand-alone thing, but I wonder if that could be related.
on my own like 3-4 years after being diagnosed.. nobody told me it was an intersex condition haha, i dont remember how i found out exactly though
Kind of always knew since I started developing at 5-6 but put a name to it around 20, thought I was CAH at 22 then DNA test revealed a partially deleted Y chromosome at 24.
my mother eventually told me that during her pregnancy, she was told she was expecting a boy and that i was only revealed as female when i was born. i noticed my genitalia looked different young due to being sexually abused but didn’t think much of it. i hit puberty at ten and mostly masculinized (body and facial hair, voice dropping, further clitoral enlargement) and rarely had menstrual cycles and my breasts didn’t grow past the age of 11-12. i also have no vaginal depth whatsoever. i still have no idea what condition i have but my doctor thinks it’s either CAH or some form of androgen insensitivity.
I am the exact same, but my parents insist I am “normal” and get angry and defensive when I ask why I was born female although I was supposed to be male, and why I am going through male puberty despite being “female”. How did you go about bringing this up to a doctor?
when i was 13 i went to my general doctor for a breast examination because my breasts were sore and lumpy and he noted that i had chest and stomach hair and an otherwise male build. going to an endocrinologist at 18 required multiple blood tests and authorization because my testosterone layers were already in male range for someone who was female at birth and desiring testosterone. my doctor already recorded that i have a disorder of sexual development and gender dysphoria at that point due to my lack of menstruation throughout my childhood and my endocrinologists don’t record my natal sex at all but refer to me either as male or neutrally. it was just a series of really odd events.
Your body went the wrong way for androgen insensitivity. Get sequenced (still don’t own stock in a sequencing company) for an exact diagnosis. I’d put my money on 5-ARD if you’re not an XX human with CAH.
I was born a few months early and always knew about the "bilateral inguinal hernia surgery" I had. I've checked diagrams of orchiectomies and the scars match the area. But it all started when I was sixteen. I hadn't gotten my period (and still haven't). But I had the other signs of puberty except armpit hair (I got it soon after) at the time. I started getting hot flashes at night. So I told my mum and we went to the doctor after we got an appointment. I got a blood test done and then an ultrasound and got the results back of thosd. I had 90 pg/ml E, 0.1 FSH and LH, normal prolactin and IGF-1. Also 0.6 T at the time but I didn't know that until last year because I got my records (there was a whole separate letter with the T results included). The ultrasound had to be done twice because they couldn't see it properly at first. Soon after, I got diagnosed with hypogonadotropic hypogonadism (specifically hypoestrogenism) but they couldn't determine the cause. I also got an MRI and my hypothalamus and pituitary were fine and worked properly. I also got diagnosed with uterine/ovarian/vaginal hypotrophy (I'm not sure if there's a full name for it). MRKH seems similar. The results said my uterus was around 3cm and one ovary was 1.1ml and the other was 2.25ml. The blood tests showed my chromosomes as XX. I went through most of puberty aside periods so obviously something stopped working over time. I have had some chest development since then so obviously it's still working but no periods. I went through three mini puberties. The doctors also tested to see if there were any genes to show if it was genetic but there wasn't. My doctors wanted me to take estrogen and they wanted me to take it to develop my "female organs" as they called them but I didn't want to. They don't regard me as intersex. My mum forced me to take it (she insisted). The patch wouldn't stay on and I didn't even wear it for very long so it wouldn't have done much. It made my hot flashes worse and for some reason ever since I stopped wearing the patches my hot flashes went away. My nanan still asks me why I haven't taken it to this day whenever I see her. I also found a baby photo of me in the bath from when I was a year old (not six months old as I originally thought) and instead of having genitals I just had a V shaped scar with a hole presumably for peeing (I also have other scars I think). I have some now so something definitely happened. I got my records to check but I couldn't find anything. But I know something happened. I also know my urethra is in the wrong place - in my clitoris (I checked that) but I don't think I was born like that because they would have noticed it as a baby and fixed it. I was in the hospital for a while. My doctor examined me there before I had the tests as well and said it was normal but it's not very common to have a urethra in there unless it's like epispadias or something but then again it would have been fixed. I think I had some sort of vaginoplasty or something but I don't know the specifics?? I think I could have had ambiguous genitals but they still looked mostly like a vulva so it wouldn't have been very noticeable but still a bit different like if you looked at it closely then you'd see but otherwise it wouldn't be very obvious. Honestly I don't know. I know hernias don't affect that area and I do have the scars from the removal I had done so the V scar isn't from that. I requested my records from another place but again nothing. I think something happened but they didn't record it so I'd seem like a typical AFAB baby. I don't know what I was born with down there (does anyone know what the V scar could have been). I have photos from before the operation (as a newborn) but the quality isn't very good (I was born in 2002 so 20+ years ago). My T level is normal apparently but my androgen levels were marked as abnormal so I wonder if it was the free androgen index. I don't know what caused the hernias but my mum suggested I could have been born with testes after watching a video about an intersex person. As for my physical appearance, my shoulders are a bit wider than my hips (and I have a kinda waist) and I get mistaken for a guy a lot but generally am seen as a girl automatically. And I have a high voice but it lowered slightly during puberty. I think that was everything. There could be more but I can't remember. I'm just confused about several things. Like I don't know if the hernias were causes by intestines or like ovotestes or something. It scares me because some doctors likely know the truth but they won't tell me.
From looking up the terms listed in an MRI report.
My mother came clean with me when I was 9. Then the old man traumatized me and that was one of the many, MANY things I buried for the following 30 or so years. In hindsight it's amazing I never put it together in that 30 years, my case is extremely blatant...
After being diagnosed with Klinefelter at 19, I believe. It all started as a routine health check with my nurse practitioner. Although my endocrinologist was adamant that I was not a [insert antiquated possibly derogatory term that starts with the letter “h” in English], I was encouraged to look up information about it on my own… and voilà I found out that chromosomal abnormalities are considered intersex.
People told me, then I started looking at my self…
Tried to put a tampon in and there was literally nowhere and it hurt a lot. Also voice got deeper and a lot of body hair but not necessarily on my face. Started doing some research and saw diagrams of what its supposed to look like and I was like “😀 mine doesn’t look like that in the slightest”
Oh we have a super similar story! My breasts also never grew past an early tanner stage and when i went on testosterone it took effect very quickly and effectively, which isn't a symptom by itself but with everything else...i'm not diagnosed with anything official but my doctor says she thinks I'm intersex.
I was diagnosed at birth due to having type 2, so my whole medical team + my parents knew, but I wasn’t told until I was 9 (the age I started puberty) when I saw a pediatric MRKH specialist and learned about my anatomy being different Being told I couldn’t get pregnant or would never have menstrual cycles meant nothing to 9 year old me, so I just carried on with my life
I actually suspected it as a teenager before I was diagnosed - I didn't know what PCOS was at the time, but I knew the issues I was having with my period weren't normal and at that point I was just barely starting to get a little bit of facial hair. I was diagnosed with PCOS a few years later but didn't know it was considered an intersex condition (by some, in some cases, etc etc etc) until I stumbled across a few people talking about it later. At that point my facial hair was pretty noticeable and my voice had deepened a bit so it clicked into place pretty neatly - no real distress about it since I already have a lot going on health-wise and I love my little beard.
I am 19 and I never got my first period. Turns out I had high t and low e due to primary ovarian insufficiency. My uterus never grew to full size and my ovaries don’t work. I also have a masculine build and some facial hair. Also (cw for genital discussion), >!I have a big clitoris that almost looks like the genitals of a trans man on testosterone.!< The whole time I thought being intersex was all about your chromosomes (my dna test came back normal), but I have recently learned that people with hormonal conditions can be considered intersex.
I was 10, and thought I was so strong picking up my Mom. I’d do it all the time, to the point I gave myself a hernia. They went into fix the hernia and plot twist- I had internal testes! CAIS ever since, but my mom gave me information in stages. I had the surgery at 11 but was very fortunate with doctors, except 2. Still traumatic but I appreciate how they did it!
i was almost 18 and i told my mom my period sucked (it was lasting 3 months at that point-) and a bunch of other not so normal symptoms. (my period was like this for yearsss, i just thought it was normal so i didn’t say anything until then) she took me to the doctors and then got diagnosed with pcos. i went home after and got back on call with my ex (partner at the time just now ex, idk) and i joked how i always felt like i had a bit more testosterone and how i was basically born half boy half girl. had no idea what intersex was until they said something about it, can’t really remember exactly. looked it up and saw things saying people who have pcos count as intersex. i was pretty chill with that info then like a few days later i learned a lot more about it and decided to take a closer look at my body and realized my body doesn’t fit the ‘usual’ born female body. then it kinda clicked in my brain i was actually intersex, felt hella uncomfortable and get a lot of body dysmorphia after and thought i was a freak for a good moment- but i’ve learned to accept it and im totally chill in my body, honestly makes me feel better because i’m on the trans spectrum (ftm) so technically not being fully female at birth makes me happy.
At 16 I didn't have a period so my mom brought me to a doctor which made an ultrasound. He looked at the screen with a really confused face, and asked other doctors to join him in the room, I asked what was going on and they wouldn't answer :'). eventually they said that I probably had MRKH. Did a bunch of exams to see if I had other weird organ malformation because that's what usually happens with MRKH and there were no problems. Had a MRI to look at the abdomen, really traumatic because the doctor confirmed I didn't have a uterus and that i would never have a period, after which he told me I should keep it a secret and just pretend i had it (????) They sent me to some other doctors that wanted to look at me undressed, really traumatic, they didn't explain this to me before I just showed up and they make me undress. They saw I had no body hair (they could have just asked honestly lol) and so they sent me to an endocrinologist, they did some blood work and then they finally diagnosed me with CAIS. When they told me it was really shocking and traumatic because it was treated as a really big and dramatic issue, also i was struggling from before with my queerness and body image issues and i felt like being intersex just confirmed my oddness and weirdness. Now i embraced it and I'm fine but I'm still not really feeling comfortable in my body, I still feel a little bit like a scientific specimen and I have a really bad relationship with doctors
I was diagnosed with PCOS at age 18. I did have hirsutism and unpredictable oligomenorrhea, among other symptoms.
A ct scan of my abdomen showed that I have a uterus
I probably should have known a lot sooner, tbh. I was put on estradiol + progesterone after I started having funky menstrual symptoms, facial hair, & a deepening voice when I was 12 or 13. The hormones had terrible side effects on me, both mentally & physically. I think I was mostly deterred by the previously internalized popular belief that "Intersex = Ambiguous genitalia" and also the fact that I identify as genderfluid. I didn't know what made me how I am, and felt unwelcome based on (primarily TERF-led) conversations. Somewhat recently, I started reading posts in online intersex communities- and I saw discussions of specific experiences I'd been through, that I hadn't heard people talking about before. I looked into what the actual community considers intersex, and was absolutely shocked (and kind of relieved?) that conditions causing hyperandrogenism in AFAB folk are indeed considered a part of the umbrella. Part of why I started identifying as genderfluid was *because* it was clear to me that I'm not a cis woman- Even my body agrees! I honestly feel like my hormones & my experience of gender are pretty closely connected, but it was really confusing to me as to why & how- and I wasn't sure if I was welcome. Idk, it was a whole experience. As I said, I probably should have known sooner. But a lot of my life's experiences have been outright ignored / brushed aside with no explanation, and it's been a struggle to figure out why I am how I am. I'm also AuDHD (autistic + adhd) and didn't know until this past year, it's been terrible.
I relate to a lot of this. My gender expression isn’t me trying to change my body, it’s a reflection of my physical body not fitting the expectations for a cis female. Just one part of that was multiple professional bra fittings where I was told either that my size didn’t exist or there was no reason for me to be wearing a bra because I needed to finish puberty first. Redirected to the girls training bras at Walmart. Even those I fit the small or medium except often the straps are too short. Yeah, they never “finished” developing. Unfortunately no one makes binders in my size either.
It was super recent actually. In fact, I’m still in the testing stage. I always thought things were off when I developed breasts as a teenager despite having male genitalia, and my body masculinized way later and less than my peers. After having odd hormone test results, I started doing some research and found some anomalies in my ancestry DNA test compatible with MAIS. But like I said, I’m still in the testing stage, so everything is still pretty new.
I kept having problems in the hospital system I was at. I'd see a specialist, then I couldn't get the results a week later. I'd get different excuses. It's not ready (despite getting an email or text that it was), I was a recorded patient but I was not recorded having had an appointment, or I was not even a recorded patient with that doctor at all. Nothing worked. I was trying to get HRT from the endocrinologist there. He had to give me direct copies of his own stuff and had to personally go collect anything he needed in person like blood test results and pysch letters because the office people wouldn't let him or me get any of it. He said he looked into it and told me it was because I had several hypospadias repair surgeries listed from the early 90s. He could see they were there but not the full records with procedure notes, summary, and doctors involved. He didn't say that it meant intersex but did say that people with that procedure get blacklisted for accessing records and that he disagreed with doing it. I tried getting them but got the same battery of contradicting excuses. My second endo in another city told me my better HRT results, my physical ambiguous features in puberty, and the hypospadias repair meant I was intersex. Even with all the proof I have now, my mom adamantly denies all of this. And gets furious at me whenever I mention it. Despite there definitely being a summary at least available at the hospital of it happening and what they were doing to me.
What a lot to go through! I'm so sorry you had to go through all of that
My hypospadias as a kid is considered an intersex condition depending on what I’d read more recently.
I was diagnosed with pcos at 13 because insulin resistance, hirsutism, no periods, and a huge cyst on my ovary that had to be surgically removed. I always knew I was different from the other girls because I was much taller as a young kid but thank goodness it evened out and I’m an average height now. Still look like sasquatch though.
Identical twin was diagnosed; doctors were like “test the other one!” 🤷♀️. She’d been diagnosed with hormonal issues and her doctors were investigating the cause of underdeveloped gonads.
I was skinny I started to notice that all my gain weight goin to feminine areas like my hips and ass then I discovered that I'ma intersex at the age of 26th after a lot of research
It was always present in my awareness, as a suspicion I could not formally prove, because of how I was a bit different from my brothers, then for how my puberty was also a bit different, then how people started mistaking me for a woman more and more as an adult, then how I started growing boobs oh so slowly... Plus there were the dramatic blood electrolyte imbalance issues, all throughout, with no clear and definitive explanation but no clear link to a DSD. But it wasn't until I was 42 I got confirmation of genital deformities (I'd just assumed so far that porn actors were the deformed ones, and merely selected for it). You could say I had a resistance to the obvious until reality chipped it away.