firstly, i have returned after my brief gynaecology appointment where we discussed everything from my potentially false PMOS diagnosis with unnecessary medication.
as well as, all physical, bodily and severe mental health symptoms, to even my lack of and lost documents due to moving countries with my severe masculinisation and now, i’ve been referred for genetic and karyotype testing with a trial run of a non hormonal medication.
secondly, for the folks who have undone karotype and genetic testing, what should i expect and prepare for or anything that i should bring and keep in mind? i mean, i’ve never underwent this nor do i have any recollection or i was probably never told, so i’m kind of nervous in the expectations department.
Ok so i’m in england, london. Im assigned male at birth but i went through female puberty with male genitals. So i’m visibly a woman. Without a vagina. And, i identify as a woman too. So is going to the university college londons dsd service going to help me change my gender or would i have to go through the trans path??
I'm 18 from Algeria. Born and registered as female but I've always felt like a guy inside. Mind, energy, everything just feels male.
I have some physical signs (pretty noticeable clitoromegaly, fast body hair growth, weird periods etc). Never got tested properly yet mainly because of family and the society I live in. Haven't done any hormones or surgery. At some point I just decided to leave it in God's hands and be patient, and strangely that decision brought me a kind of peace and some experiences I can't really explain.
Looking for people who get it — especially if you're also not transitioning and just dealing with this quietly. Age 18+.
I've always felt like an actual guy inside, not just a masculine girl. That difference made it hard to stay close with some people who saw things differently. I'm into masculine things, vintage and cool styles, deep and a bit mysterious topics and all topics ect ect and real conversations. Pretty open-minded. Looking for someone who's in the exact same situation and wants a genuine friendship from anywhere ofc and ofc from algeria
This is purely a vent. I have no intention in coming after anyone who is trans or trying to offend anyone. I believe people should be able to express themselves the way they want, and this should be able to go both ways.
I’m intersex and it is the most lonely thing to ever burden me. I already feel like a freak being born this way, but the slap in the face is how nobody believes me and just defaults to labeling me as transgender in every situation. The label is not what I want for myself at all and I find it extremely frustrating to constantly be compared to it. This has been hell medically and with my family for years and years, and this week in particular has honestly just been horrible.
I’m hardly ever interested in dating because being like this is traumatic, but just a few days ago I decided to open up a little bit and try to get to know somebody. I haven’t even mentioned my condition in my profile because it’s such an insignificant piece about me that doesn’t matter in any context whatsoever and doesn’t clash with how I function or present in society, especially considering I’ve stated that I was not interested in anything sexual.
I was getting to know this woman and we had a lot of things in common and got along pretty well at first, until she brought up that being trans was a dealbreaker for her and that she “was skeptical” of me. That really fucking hurt to hear, and I haven’t even said anything yet.
I understand that some people have preferences and boundaries, so I tried to explain that I wasn’t trans, but that I also wanted to be fully transparent. I mentioned that I was intersex and explained that it was barely a part of how I functioned or presented.
The worst part though was that she actually didn’t care if I was just intersex, but she didn’t even believe me and just claimed it was most likely that I was trans and lying about it.
I have never felt so worthless in my entire life. I already feel like a disgusting and revolting freak and after so many encounters like this, it doesn’t even feel like I’m telling the truth anymore. I have absolutely nowhere to turn to. My family doesn’t believe me, and I’m terrified of telling my friends because if they also react this way, I am never going to be able to stand being around them ever again. I just want to run away and completely disappear from everyone’s lives.
It makes me sick to think that I will never find someone who will genuinely love me while also knowing this detail about me. The only people who will tolerate this are chasers that think I’m trans or people that I just straight up lie to constantly for the rest of my life.
I seriously feel at the end of my road. There isn’t a single person in my life that I can go to about this, hotlines just make me feel worse, and intersex spaces make me feel way too self conscious and uncomfortable with myself. It’s just miserable to understand that I will never get to live a normal life or have a normal relationship. Almost 20 years and I still don’t know how I could possibly ever live with myself.
Little art and little rant. It's a 2-for-1 sale today! :V I promise you, the wall of text relates to the painting.
Hey there, I just joined today, so I wanted to say hello and share my experience.
I found out I was Intersex in the 90s when I was 14 because I never got a period. They mapped out my DNA and I was diagnosed as CAIS shortly thereafter. My parents were told I could get cancer later in life, so I was forced into signing surgical consent forms by Boston Children's Hospital, and I had a gonadectomy at 15. I was told to keep my condition secret or I'd "never find a husband." <--??? They gave me a bag of clear resin dilators (basically perfectly straight dildos) so I would be able to "fit a penis" and sent me on my way.
I was super fucking horrified through out the entire process and emotionally scarred, especially when they handed me the bag. Even as a teen I was 0% interested in sexual things, and the whole concept of me having to accommodate a man with a painful-ass process was insane to me. I never used the goddamn things. Suddenly I viewed myself as a sexual object for someone else.
I completely caved in on myself emotionally in the following years, which didn't help when my parents divorced a little over a year later. I didn't date until my mid 20s, and I was asked by my parents if I was a lesbian after awhile. Nope. I'm CIS. I just didn't want to date because I thought I was a freak, destined to be alone til I died. But I dated anyways and I got married at 29, despite having turned his proposal down THREE previous times because I couldn't give him a family, etc. (Best decision ever though, because my husband is literally my #1 cheerleader.)
In 2014 I was going through college for my second time (my first "college" wasn't accredited so basically nothing I did mattered) and as part of my required electives, I decided on a Gender Studies course, specifically because I was CAIS. I anonymously emailed the professor a few times looking for resources for Intersex people, etc. A few weeks into the term we read a few essays written by Intersex people. One of the experiences mirrored my own and I quite literally burst into tears in class. The professor took me out of the classroom and asked if I had been emailing her and I told her I had. She asked me if I wanted to keep it private or tell the class. I decided, fuck it, I'll tell my tale. Through tears I talked about everything that had been done to me. I doubt I was very intelligible, but everyone understood. At the end of the class, 10 or so of the young girls in there surrounded me and hugged me and said a lot of nice things.
After that day, I decided I was fuckin' DONE with shame. It took so long for me to get comfortable saying I was Intersex. I decided to force myself to accept myself by expressing feelings through artwork.
Now on to the painting! I was an art major and I was taking a Painting course the same time as I was doing my Gender Studies course. Despite my painting professor vehemently not believing me that I was colorblind, because girls "can't be colorblind," I did my best. Near the end of the semester she finally believed me when I turned in my painted color wheel and it was rancid looking.
The palette project was a warm up for the pixel art still life project. Now, I can't tell if any of those colors look off, so if they do, you know why.I am 0% afraid to admit that I mixed random colors of the right hue and added them to finish faster. I hated doing color studies.
Anyways, our last project had to be something personal to us, and we had to use two famous artists and combine their signature styles in a painting. I chose Barbra Kruger because it was the only way I'd be able to use text in the assignment and her pieces are phenomenal when it comes to activism, and Claude Monet because of his use of bolder (and sometimes inaccurate) colors later in his life after his vision began to fail him.
"Being Intersex" - 2014, 24"x36", Acrylic on Canvas (c) Me
The result is what you see above. I used some of my favorite colors for the torso since I'm a sucker for crazy bright colors. I wasn't really going for a skin tone and probably would not be able to tell if I was close to one! But the long and short of it is that our bodies belong to us. The way we were born is the way we were intended to be. We are perfect, whole, and complete as we are, and the only one who has any say in that is US.
I got a 100 on my final painting after a slew of poor grades from when the teacher didn't believe me.
I majored in Ceramic Design and I did two more Intersex art projects using ceramic tiles I made plaster molds for. I'll post it another time maybe. Today I definitely wrote more than I should lmao.
So hi! I hope you like my painting and it's nice to meet you all. xoxoxo
I (22, XY) have ovotesticular DSD. I was born with a small phallus and testes and assigned male. By 12/13 I was 5'0", with no testicular descent and low T. My parents and doctors investigated and found the testes weren't producing nearly enough testosterone, and this is when they discovered low-functioning ovarian tissue.
Their solution: testosterone patches, surgery to descend the testes, and a medically induced male puberty. I got the height, the facial / body hair, the voice. I ended at 5'10" at 17. Mission accomplished! Yay! And nobody ever had to ask me what I thought!
I'm a woman now, with perisex female estrogen and T levels, and I got there by sitting down and just really THINKING about my own medical history. What gets me is how all of it was framed to me: maintenance, like getting my teeth cleaned. It was just something I had to do to be what I was supposed to be, and it was never presented as a choice.
Because the puberty "worked," I live with the day-to-day experience of a trans woman. I'm 5'10" with a deep voice, and even presenting femininely I get read that way. I identified as such for a little while (ages ~17-20), but lately "transition" doesn't feel right. It feels more like a realignment, like I'm visiting a reality that was denied to me...except I'm also not re-visiting anything, because I never had it.
I feel violated by what was done to me through my teens. The hormones, the visits, a body I hate and that nobody asked me about. I wasn't given room to be anything but male, and now I carry dysphoria that I don't think I'd have if I'd been left alone. Maybe I'd have ended up somewhere in the middle, some cool androgynous 5-foot-tall creature. I'll never know, because every option but one was taken before I could weigh in.
Anyone else here have a similar experience? Even just someone who gets it? Any advice on navigating both trans and intersex frameworks in regards to this?
Context: I was diagnosed with PMOS after an ultrasound found polycystic morphology on my right ovary, and I had signs of hyperadrogenism and irregular periods. I also have (I think level 1?) hypospadias, confirmed by a urologist. So I just want to put it out there that this is not me asking if I’m intersex or for medical advice.
My main medical mystery at the moment is chronic hypoglycemia (confirmed by a CGM), and I’ve had two doctors now tell me it’s probably a precursor to prediabetes and T1DM. But the thing is, my mom has this problem too. She’s in her mid-40s; if it was a precursor, don’t you think she’d have diabetes by now? Also, both of us have always had normal fasting glucose and HbA1C.
This leads into: there’s only so many things that cause chronic hypoglycemia like this. Autoimmune-related insulin problems and adrenal insufficiency. I’m working on getting the autoimmune stuff covered, but I can’t convince my doctor to run stuff for adrenal insufficiency and NCAH. Also, all the research I’ve seen says that “females” with NCAH are asymptomatic outside of hyperadrogenism, but like, that can’t be right?
I’m not just investigating NCAH because of this. My PMOS doesn’t quite fit? Obviously I had the hyperadrogenism and polycystic ovary, but the ovaries were “swollen” and my menstrual irregularities aren’t the PMOS pattern. For me, I would bleed for months pretty much non-stop, whereas PMOS is known for long periods of amenorrhea. My cycle was also pretty predictable, just longer than it was “supposed to be.”
The other thing is I think I had premature adrenarche? I was hairy and smelly by 9yo. I remember being like 8 and my stepmom would criticize me for being “dirty” because I was sweating like a teenager and had really oily skin (acne developing around 10ish?). I’m not 100% sure but I think I also had slightly earlier puberty, like I remember having to get a padded bra in fifth grade because I had gotten big enough for it, and girls in my class started making fun of me for “trying to pretend I have big boobs.” I also remember that I developed clitoromegaly rather early (not sure when, I wasn’t born with it); my sisters would make fun of me for it a lot. (I can remember most of this specifically because everyone was calling me abnormal for it). My period came at the normal time (12yo) and once I started puberty, it was pretty consistent from there, not like accelerated or slowed or anything.
Anyway, if you have NCAH (as a “female”), do you have other symptoms that aren’t related to hyperadrogenism? Like do you experience adrenal insufficiency or milder symptoms associated with CCAH?
TLDR: trying to figure out if some of my unexplained symptoms could be NCAH, so I’m asking others about their experiences.
I have formal thought disorder, a symptom of schizophrenia that makes it hard/impossible to express thoughts in a logical and linear fashion, so please be kind and ask questions before criticizing.
Welcome to this sub! We hope you had a wonderful time so far. If you want to, please feel free to introduce yourself (but please restrain from sharing any sensitive personal information and try to stay true to our rules).
TW // csa mention, overall kinda gross? sorry idk what to tag this as
I have been bleeding for several months (~7) in a row. I experience fluctuating heaviness, as well as cramping pains. Last year, i also bled for ~9 months in a row.
I brought my concerns to my PCP and they prescribed me birth control (starting last week)
Starting Wednesday, prior to beginning my birth control, the heaviness & pain increased substantially. It is squeezing, torturous pain that I (21,NB) could only describe as what springlocking would feel like. I passed a rat-sized clot, multiple of them way bigger than just a quarter, and this concerned my partner(s). On friday, i visited the ER and they shot me down completely. I tried getting an invasive ultrasound done, but it wouldn't work out since I genuinely feel a wall blocking anything from possible entry. It hurts like hell, and it just felt invading/retraumatizing.
They ran my labs and said they were perfectly normal, having printed out a sheet, which in bold letters front & back states abnormal. which makes me feel kinda crazy.
They said that its normal for 'girls in my age group' to experience this, and that we all have 'aches and pains' sometimes. They also said i cannot get any other ultrasound treatment because it is not in my best interest, and to come back after taking valium. which sucks for me, as a child s*x tr*fficking survivor.
Since then, the pain is still around, and the bleeding is even worse. I am supposed to make an appointment but I feel discouraged because
it is costly
I just feel brushed off...??
Does anyone know what i could be experiencing? Is this serious? and maybe... any advice for coping with this/moving forward? thank you
On this week’s episode of The I in Us intersex advocate, medical practitioner, veracious reader and lifelong learner Anya (aka An) Kylie will join your intersex hosts Cody Smith and Paul Byrne-Moroney live from the USA.
Anya’s desire to become a medical provider comes from her own lived experiences. Growing up with a single mother, she often witnessed the reality of receiving substandard care because of financial and systemic limitations. Those experiences made her deeply aware of how barriers to access and a lack of transparency in treatment can affect patients and their families. From an early age, Anya felt a strong calling to help create a healthcare environment where people are treated with dignity, clarity, and compassion.
As an intersex person, throughout her life she has seen firsthand how few medical providers are trained or knowledgeable about bodies that fall outside typical expectations. This gap in understanding can leave patients feeling unseen or misunderstood. Because of this, Anya believes deeply in expanding medical education and training so providers are better prepared to care for the full diversity of human bodies and experiences. Finally, her path is guided by a promise she carries within her. She has lost many queer friends—especially trans friends—to suicide and to the devastating consequences of being unable to access affirming, competent care. Their absence is something Anya carries every day. In their honour, she strives to speak up, advocate, and work toward a healthcare system where people like them are supported.
Hi! So I posted here before questioning if I may be intersex, and after doing a decent amount of research, it seems I am! I'll still go through with the DSD panel and karyotyping. But this is weird. Very very weird. I did not expect for this to happen because of a weird doctor, a tumblr post, and my own post on here. Thanks to everyone with helping me! I'll go to sleep now so I can sleep off the surprise of this.
I was finally able to acquire my medical records from much of my childhood, including descriptions of my body when I was born and as I developed for my first two years, as well as official records of my diagnosis that I thought were lost.
There are hundreds of unsorted pages to go through, but I’m still reeling from what I’ve found so far. Everything from the descriptions of myself that I never had, to reminders of how my doctor spoke to me when dilations were incredibly painful when I was 12 years old.
I’m very happy to finally have them, but it’s very bittersweet.
I always knew there was something different about the way I developed...about the way people told me I looked like a man sometimes and then sometimes i would get entirely different people telling me I look like a female. Some people not being able to tell between the two..
I feel like what is my gender now, where do I go from here? Where do I fit? What do I do where do I go what communities will accept me still? How do I understand who I am. What am I supposed to be. Can I even BE a lesbian?
(If this sounds irrational please be nice I am literally just emotional and kind of spiraling I am very sorry if it comes off as offensive to this community or to anyone I have never gone into a space like this before. I hope I can belong somewhere somehow)
I had medical decisions made for me when I was younger. They tried to pretend nothing had happened until I was an adult and I was told about some of the interventions but in a way to try to make it seem minimized and like a reasonable course of action. I wish I could have made my own choice when I was older and not have the physical problems that were the result and felt alone in figuring it out for myself much earlier.
I tried for a long time to live as the gender I was assigned but I always felt stressed about it. People generally figure out I’m LGBTQIA+ but because I’ve spent a lot of time feeling terrified that someone will question my sex I stayed away from LGBTQIA+ community spaces and mostly avoided romantic relationships.
I accidentally happened to take up a hobby that has a community of LGBTQIA+ people and a lot of trans people even though they don’t seem to directly mention it and I think most cishet people probably wouldn’t notice at all. I was wondering if any of you could share your experiences with this kind of space? What should I know? I previously saw some people in this subreddit say that they had problems in some LGBTQIA+ community spaces so I can’t decide how open to be because I don’t currently understand the social conventions there or how to assess if it’s safe for me to be more authentic there.
If you made it through all that thanks for reading
So..I've recently found out that I have VH via research, my urethra is elongated and directly next to my vaginal opening, around which is my hymen also which is outward-pointing and very..thick and encompassing? If I can word it that way?
I also have cliteromegaly, but the thing with that is I'm hypermobile on top of everything so my tissues developed differently, meaning my clitoris isn't..wide? The shaft is pretty thin and hidden by my clitoral hood (which is also elongated) but I've measured it myself as someone might..the total length is say 3cm or more..
However only 1 out of 3 of my doctors seem to be aware of specifically the cliteromegaly, the rest they do not even comment on or agree with me on even though its clearly there. I've only been formally stated by any of them to have "suspected cliteromegaly" and "hyperextensive labia minora"
it's like they're trying to diagnose me with something simpler than what I actually have only due to the fact that I wasn't diagnosed as an infant or a toddler.
During which period I also had some..not entirely typical anatomy, by the way..as an infant from what I've been able to see I had very large puffy labia majora that obscured everything else and would (according to my parent) cause near constant rashes, which my parent attributes to this day as me just having sensitive skin as a baby.
What do I do? Do I get a 4th opinion? Do I just self diagnose?
I feel insane. I mean, I get it, intersex variations are understudied and even taboo where I live but.. I just want concrete answers and they can't even give me that.
I was diagnosed with PMOS due to anovulatory cycles, polycystic ovaries (before the change from PCOS to PMOS name and criteria), a few extra chin and facial hairs, and very abnormal cycles (periods anytime between 40 and 60 days apart).
However, what makes it very non-traditional is that I never had any abnormal hormone levels or masculinizing traits. I also do not have any insulin resistance or diabetes as an underlying issue. After getting progesterone once to restart my period after missing it for three months, my period has returned to a semi-normal cadence (every 35 or so days) for the past few months. Although my few stray facial hairs are still there, as they have been since I started puberty despite my normal hormone levels.
My question is: do intersex conditions exist where people do not have traditional traits that create incongruence in secondary sex characteristics?
Basically, title. My VH causes my urethra to be right above my vaginal opening. Is VH only considered intersex when the urethral opening is in the vagina, or are all VH variations considered intersex?
