Born intersexed?? Help needed

[Anna_81]

Hi All,

Ever before I started hormones I've always thought something didn't look quite right downstairs on the underside of my penis. I have some brownish lines running along and around the underside of my penis.
I do realise that it is normal to have a penile raphe line, but feel this is more than that, and to be honest it's driving me a bit nuts not knowing what it is!!

I have a picture, but am unsure if we are able to post one of genatalia??
I'm guessing probably not. Is there someone within the community that I could possibly email it to, and get an opinion??

I'm sorry for the nature of my question. I don't mean to gross anyone out, I'm just at my wits end trying to solve this mystery!!

Thanks,
Annah.

[Mariah]

Anna, the picture we can't have posted due to the fact that this a family friendly site and it also is against the rules. Is there a particular issue besides the line that is driving you nuts or is it just the line. I have had a lot of work done down there and I have the same line too. I know it's unnerving when don't have answers to things. I would love more answers too but I moved passed the true need for that awhile ago even though I would gladly take the info now anyway. Hugs
Mariah

[HughE]

Do you know whether you had any genital surgery as an infant? Perhaps you were born with hypospadias or chordee (look them up on wikipedia), and were operated on to make your genitals more normal looking. That might explain the marks. Both hypospadias and chordee are often associated with intersex conditions. Another thing commonly associated with being intersexed is that you develop a type of body structure known as a "eunuchoid habitus", as a result of having below normal male testosterone during childhood and puberty. Here's a list of the characteristics associated with eunuchoid habitus:

* long, slender arms and legs
* feminine looking facial features
* legs significantly longer than the height of your upper body
* an armspan more than 3cm greater than your height
* sparse or very fine body hair
* a female pubic hair pattern (like an upside down triangle and confined to the pubic area)
* an inability to build upper body muscle
* gynecomastica
* a female carrying angle
* a female digit ratio

Basically you end up with a body structure that's more like that of the female members of your family than the male ones. It's more noticeable during your teens and 20s, after that, testosterone (even at below normal male levels) will have masculinized your body to a significant degree.

Obviously, once you start on female hormones, you start looking more and more female anyway, so you need to remember back to what you were like before starting hormones (although, past the age of about 20, your bones have finished growing, and things like digit ratio and the proportions of your limbs don't change any further, so provided you didn't start HRT until you were older than that, they should still be what they were prior to HRT).

[Anna_81]

Anna, the picture we can't have posted due to the fact that this a family friendly site and it also is against the rules. Is there a particular issue besides the line that is driving you nuts or is it just the line. I have had a lot of work done down there and I have the same line too. I know it's unnerving when don't have answers to things. I would love more answers too but I moved passed the true need for that awhile ago even though I would gladly take the info now anyway. Hugs
Mariah

Thanks for the support Mariah, and no worries re the photo, completely understandable!!
I seem to go through these phases where I'm okay for a few months, and then for some reason I get all curious and worked up over it again. I'm feeling a bit better today, but have decided to research it a bit more and have made the first step of consulting my doctor for my childhood medical records, which I should be able to obtain in the next couple of days.

Do you know whether you had any genital surgery as an infant? Perhaps you were born with hypospadias or chordee (look them up on wikipedia), and were operated on to make your genitals more normal looking. That might explain the marks. Both hypospadias and chordee are often associated with intersex conditions. Another thing commonly associated with being intersexed is that you develop a type of body structure known as a "eunuchoid habitus", as a result of having below normal male testosterone during childhood and puberty. Here's a list of the characteristics associated with eunuchoid habitus:

* long, slender arms and legs
* feminine looking facial features
* legs significantly longer than the height of your upper body
* an armspan more than 3cm greater than your height
* sparse or very fine body hair
* a female pubic hair pattern (like an upside down triangle and confined to the pubic area)
* an inability to build upper body muscle
* gynecomastica
* a female carrying angle
* a female digit ratio

Basically you end up with a body structure that's more like that of the female members of your family than the male ones. It's more noticeable during your teens and 20s, after that, testosterone (even at below normal male levels) will have masculinized your body to a significant degree.

Obviously, once you start on female hormones, you start looking more and more female anyway, so you need to remember back to what you were like before starting hormones (although, past the age of about 20, your bones have finished growing, and things like digit ratio and the proportions of your limbs don't change any further, so provided you didn't start HRT until you were older than that, they should still be what they were prior to HRT).

Thanks HughE for the vast amount of info!!
I myself do believe, and have done for some time, that I may have been born with hypospadias.
As mentioned above, I'm currently taking all steps possible to obtain my medical records to find out.

I am a very tall 6'1, slim-lanky person and have always had feminine facial features, which are quite obvious when looking back at old photo's, especially school photo's where it shows me standing next to other girls in my class.
I also have very long arms and legs, have the female digit ratio and carrying angle.
In fact everything on the list you provided, I pretty much have, except I never had any male breast growth and even after two years on HRT, they are only about an A cup, although they are growing slowly!!
I'm an avid runner, so think this may have something to do with my slow breast growth, as I don't seem to put on much weight, hence the hrt dos'nt have much fat to distribute to my breasts!!

Anyway, thanks again to you both.
Will keep you posted

Annah.

[Anna_81]

Well, I got my medical history back today, although there is a huge chunk of it missing from when I was around 2-8 years of age, so it hasn't given me any information that I didn't already know about!!
I do wonder where that six/seven year span of medical notes dissapeared too though?? Seems a bit odd.
Never mind, back to the drawing board I guess!! lol.

[Mariah]

Your lucky your only missing those. 30 years of mine are missing, but it's true they make sure anything of importance in our cases isn't available to us. It's standard protocol unfortunately. Hugs
Mariah

Well, I got my medical history back today, although there is a huge chunk of it missing from when I was around 2-8 years of age, so it hasn't given me any information that I didn't already know about!!
I do wonder where that six/seven year span of medical notes dissapeared too though?? Seems a bit odd.
Never mind, back to the drawing board I guess!! lol.

[xorchidfeyx]

Well, I got my medical history back today, although there is a huge chunk of it missing from when I was around 2-8 years of age, so it hasn't given me any information that I didn't already know about!!
I do wonder where that six/seven year span of medical notes dissapeared too though?? Seems a bit odd.
Never mind, back to the drawing board I guess!! lol.

Dear Anne,

I know and understand your pain, during the early stages of my transition I also asked the GP I went to as a child the hospital I was born at and the doctors I was send to as a child for my documents and they told me I had no right to see those documents for my own 'protection'.

They're keeping a big secret of me: All they ever told me was that I was born with brain damage in a male brain center. But this doesn't explain my natural hormonal imbalance and (before SRS of course) I also had a very weird scar like line on my genitals

But after 5 years of being post-op (I'm 27) and having no more contact with my family and living on the other side of the planet from where I grew up, I've decided that whatever the truth is, it doesn't really matter because if it ends up being true I might get angry at my family and if it isn't true I might feel disappointed, so it's a lose-lose situation, so it's better to just live my life and enjoy it

[HughE]

They're keeping a big secret of me: All they ever told me was that I was born with brain damage in a male brain center. But this doesn't explain my natural hormonal imbalance and (before SRS of course) I also had a very weird scar like line on my genitals

I don't know whether you've seen any of the stuff I've posted on here about DES, but they do have a big secret that I'm sure at least some doctors do know about: a lot of us are the way we are due to our mothers being prescribed artificial female hormones (estrogens and progestins) while pregnant with us.

[xorchidfeyx]

I don't know whether you've seen any of the stuff I've posted on here about DES, but they do have a big secret that I'm sure at least some doctors do know about: a lot of us are the way we are due to our mothers being prescribed artificial female hormones (estrogens and progestins) while pregnant with us.

Could you give me a link to the things you posted about DES?

The only things I know are these:

1. My family told me that a week or two before I was born my mom had a disease which made all the blood she gave to me via the Umbilical cord poisonous and the doctors made me be born 2 weeks early. Everyone thought I was going to die, until last moment a woman on the other side of the country donated enough blood to replace all my own blood, which saved me.

2. My family told me that the first 3 years of my life I was sick all the time and that I had 'every' disease that you can imagine (this is an over exaggeration of course, but it tells us that I did get sick a lot and seem to have had some more 'exotic' diseases). But at the age of 4 this suddenly 'magically' stops and I never get 'sick' again, instead my first memory ever is from the age of 3-4, which is a gender dysphoric memory.

3. At the age of 6 my kindergarten teacher (who's now retired and with who I'm now friends, and who told me a few years ago: "I had a feeling you were actually a girl") told my parents that there was something wrong with me, because my balance was that of a child of 2 and I couldn't speak yet (I did have a self developed language) which triggered 2 years of medical studies and research. What they found out was that the poisonous blood I was given via the umbilical cord had damaged my brains (at the age of 15 I found out that the damage was in a male brain center) and had damaged all the muscles in my whole body, making them shorter and thinner. After which I was send to Kinesists and Logopedists to improve my muscles, balance and speech.

4. At the age of 7 my gender dysphoria reached a critical level because in elementary school the teachers didn't allow me to join my girl friends to the girl toilets anymore, which made me even more depressed than I already was and I tried to cut of the thing below with scissors, but I failed to do so because it hurt too much, which resulted in me giving up on life and I tried to hang myself multiple times (at the age of 7). At this point all the studies were still going on about my brains and so the doctors referred me to the best child therapist in the country. After many sessions the doctor finally told my parents: "This child does not identify with their own body, but because of the lack of communication possible (remember I couldn't speak the common language until I was 10) I can't be sure as what your child does identify." After which my mom (and my mom admits this) told him to 'fix' me. (Years later the therapist asked me for forgiveness and told me that he wished he had protested against it and had helped me be who I really am, because he suspected me to be a girl, but back in the day it wasn't as accepted and well known as today)

So those are the things I know from my early childhood. It's also interesting to be noted that often when my mom was angry at me (which was a lot, because she physically and mentally abused me at least once a month until I was 21 years old, because of her being overstressed at work) she'd yell: "If I knew you were a boy, I'd have aborted you, I never wanted you, I wish you had died at birth" and "You were meant to be a girl!!!" or whenever she was beating and kicking me when I was on the ground crying she'd yell "Boys don't cry, SHUT UP, BOYS DON'T CRY" and she'd keep kicking me until I'd stop crying. I know that the last one doesn't say anything, but the first two makes me feel like my mom was expecting a girl and that when I was born there was something 'weird' about me (that might have been corrected).

[Marlee]

A friend of mine was diagnosed as having  "eunuchoid habitus" (although I just heard that definition..thank you HughE) Unfortunately, she was born in Belarus, and there isn't even a record of her birth, let alone anything else. But she decided very early in the diagnosis that she definitely wanted to be female, and the docs in Seattle put her on hormones for that. She is, by any angle, female in appearance (except for the underneath, which she has decided to keep so far) in her early 20's now. We connected because I had some questions about myself. I may have been  "eunuchoid habitus" myself. Often mistaken for a girl in my youth, and aside from facial hair, body hair is very fine and sparse.  There was some, described as, minor surgery done at birth. I was born highly jaundiced, so always thought it had something to do with that. (born at an air force hospital, the records are vague) But T came on like a storm at puberty and male pattern baldness began even before I was out of high school. I also ignored inner feelings so much because I was, and am still solely attracted to girls.
I wouldn't say this topic has any "trigger" effect on me. But did get me thinking about it again
But it does make me wonder why medical records at birth seem to be hard to find. Is that true fro everyone? I mean I have a birth certificate..but it says nothing about any procedures related to the birth.

[LordKAT]

This sounds weird because your blood and your mother's never meet. The umbilical blood is yours, not hers. There must be something else that crossed the barrier between your blood and hers.

Is it possible that it was an rh problem? If you are rh positive and your mother rh negative, antibodies from your mother could attack your blood.

[xorchidfeyx]

This sounds weird because your blood and your mother's never meet. The umbilical blood is yours, not hers. There must be something else that crossed the barrier between your blood and hers.

Is it possible that it was an rh problem? If you are rh positive and your mother rh negative, antibodies from your mother could attack your blood.

No that's the weird part, me and my mom are both O-

[HughE]

Could you give me a link to the things you posted about DES?

https://www.susans.org/forums/index.php/topic,84224.0.html

That thread actually started life before I'd even heard of DES, intersex or gender dysphoria, however I've been contributing to it a fair bit over the last couple of years, and it's where I've posted most of the stuff I've said about DES on this site. 

Basically the point I've been trying to make is that testosterone has to be present in order for male brain development to take place in the fetus, and yet here are doctors giving pregnant women all these hormones with testosterone-suppressing properties, in doses that would completely shut down testosterone production in an adult man. What happens if they also suppress testosterone production in a male fetus? In theory, you should end up with people who look male, but have brains that developed as female instead of male. From what I've seen, it looks very much like that is exactly what has actually happened with DES, and the way it tends to manifest itself later in life is as MTF ->-bleeped-<- (often accompanied by intersex-related genital abnormalities, chronically low testosterone and a eunuchoid body structure).

3. At the age of 6 my kindergarten teacher (who's now retired and with who I'm now friends, and who told me a few years ago: "I had a feeling you were actually a girl") told my parents that there was something wrong with me, because my balance was that of a child of 2 and I couldn't speak yet (I did have a self developed language) which triggered 2 years of medical studies and research. What they found out was that the poisonous blood I was given via the umbilical cord had damaged my brains (at the age of 15 I found out that the damage was in a male brain center) and had damaged all the muscles in my whole body, making them shorter and thinner. After which I was send to Kinesists and Logopedists to improve my muscles, balance and speech.

A lot of the physical symptoms could be due to having below normal male testosterone production. My physical coordination has never been particularly good either (although I've never had treatment for it), and I've been severely lacking in physical strength all my life. The blood work I had done last year is consistent with secondary hypogonadism (although unfortunately by that stage the senior doctor at the practice had taken over, and he refused to refer me on for any further tests or treatment, so that's as much as I know).

P.S. Sorry to hear about how badly your mother behaved towards you. Having a trans kid seems to bring out the worst in a lot of parents!

[Sharon Anne McC]

*
xorchidfeyx:  Same as you, my two families rejected me so I figured I need to make my happiness on my own terms rather than worry about them.  I feel for you as well.  My mom apparently needed to get smashed drunk to beat me but my dad just did it - both trying to counter my feminine protesting during my childhood and teens.

I was born in 1956; my medical history is vague as an adoptee.  My medical history finally began making sense retrospectively with my transition (I began ERT in 1979).  I had an exploratory procedure (1982) as part of an exam determining how I reversed from male to female on ERT.  Down below was not quite correct at birth, but at least no doctor mutilated what I had (mutilisation was common during the 1950s) which would have complicated my corrective operation (1983).  I was a hairy boy, but little else was notably male; exploratory confirmed mal-formed female, not mal-formed male.

Apparently, exogenous estrogen awakened my own endogenous estrogen and estrogen cellular receptor sites which then suppressed the excess endogenous testosterone; within a couple years all the male pattern hair was gone and my body fully feminised.  (https://slimandme.wordpress.com/2015/07/21/a-change-is-a-comin/)

While I do not know what medicines my biological birth mother took, the irony could be the early prescription my doctor gave to me - Diethylstilbestrol (DES); I recall the warnings to pregnant females about that drug.

*

[Lady Smith]

There's so many aspects of your life stories that I find are a match for my own.  It's bittersweet knowledge though because while it's wonderful to be in contact with other folk who are like me, I find myself feeling so angry over what was done to me as a child by doctors wanting to 'fix' the 'social emergency' that I somehow caused my family just by being born.
I'm a DES child and it seems I fit the fancy medical name 'eunuchoid habitus' as well.  Growing up I was tall and skinny with long limbs and I couldn't catch a ball for toffee.  Amazing really how teachers back in the late 1950's and 1960s set such a great store by being able to catch a ball if you'd been identified as being male at birth.  As much bullying and verbal abuse came my way from my teachers as from my classmates during my primary school years.

I don't really feel like dragging all this up again though as it's been a difficult day for me one way or another.

[Den18d]

Hi All,

Ever before I started hormones I've always thought something didn't look quite right downstairs on the underside of my penis. I have some brownish lines running along and around the underside of my penis.
I do realise that it is normal to have a penile raphe line, but feel this is more than that, and to be honest it's driving me a bit nuts not knowing what it is!!

I have a picture, but am unsure if we are able to post one of genatalia??
I'm guessing probably not. Is there someone within the community that I could possibly email it to, and get an opinion??

I'm sorry for the nature of my question. I don't mean to gross anyone out, I'm just at my wits end trying to solve this mystery!!

Thanks,
Annah.

Hey, Iv read your concern and I think I might be having the same problem. You can send me your picture if you would like to get an opinion on it. Thanks

Denisdubai2002@gmail.com

[Doreen]

Do you know whether you had any genital surgery as an infant? Perhaps you were born with hypospadias or chordee (look them up on wikipedia), and were operated on to make your genitals more normal looking. That might explain the marks. Both hypospadias and chordee are often associated with intersex conditions. Another thing commonly associated with being intersexed is that you develop a type of body structure known as a "eunuchoid habitus", as a result of having below normal male testosterone during childhood and puberty. Here's a list of the characteristics associated with eunuchoid habitus:

* long, slender arms and legs
* feminine looking facial features
* legs significantly longer than the height of your upper body
* an armspan more than 3cm greater than your height
* sparse or very fine body hair
* a female pubic hair pattern (like an upside down triangle and confined to the pubic area)
* an inability to build upper body muscle
* gynecomastica
* a female carrying angle
* a female digit ratio

Basically you end up with a body structure that's more like that of the female members of your family than the male ones. It's more noticeable during your teens and 20s, after that, testosterone (even at below normal male levels) will have masculinized your body to a significant degree.

Obviously, once you start on female hormones, you start looking more and more female anyway, so you need to remember back to what you were like before starting hormones (although, past the age of about 20, your bones have finished growing, and things like digit ratio and the proportions of your limbs don't change any further, so provided you didn't start HRT until you were older than that, they should still be what they were prior to HRT).

I think i got all but the funky finger ratio (I heard that one represents straight, the other lesbian women).  All the rest I have too ... interestingly enough.  I'm still trying to figure out the mysteries that are my birth myself.  Had ultrasound, mri, and a recent laparoscopy.  At first the ultrasound said uterus & ovaries, then mri says some fleshy prominence in the vagina... then laparoscopy says none of the above... and to boot I was born without any internal sexual organs (No prostate, seminal vesicles, ovaries, uterus, nadaaaaa).   I kinda find THAT hard to believe, but the doc that examined me did state there was no scar tissue... I looked 'Like a woman with a perfect hysterectomy inside'.

I suspect far too often people were 'fixed' in hospitals without anyone telling.. I tried asking my mother but she's refusing to communicate with me now.  At this point my chance of being born intersexed is like 110%.  I just kinda wish I knew what I was (What I am now is not in question.. i'm a girl duh).

I hope you find your answers... but this may be a rabbit hole no doc is prepared or equipped to handle. I know mine are scratching their heads right now.  My next step is a geneticist consult.  Fun fun.  BTW I'm also tall, skinny, quite long arms & legs, and very female proportions.  The only thing I don't like about it is my height, I'm 6'2.  The rest of my proportions are very female though, so that's nice.  And upper body strength? what's that? lol.   Interesting to see all these comparisons strike so close to home.

[josie76]

The one thing I think I can contribute here is to the original poster's question.

I think what she was describing is a split penile raphe. I have this as well as a sort of unfused perinial raphe. Appearently a symtom of low DHT or partially blocked androgen receptors. The genital folds only form male parts when exposed to dihydrotestosterone DHT. They do not respond to just plain testosterone.

I remember when I was little it was painful to touch below my tesicles. It wasn't like normal skin.