Questions for intersex peeps :)

[Jessicauk]

Hey everyone, I am Jess, I am a 29 year old trans woman from the uk, currently pre hormones and surgery..
So a recent hormone level test has caused me to question whether I could possibly be intersex.
Obviously having dysphoric feelings something has always felt off however at the age of 28 after getting out of an abusive relationship I decided that I was going to transition to be my true self (nothing unusual there) and I totally understand the difference between being trans and intersex however after my initial blood test with my gp I have found out that my t levels are very low and my e is a higher than usual. Now, iv always looked a little andro and let's say, puberty didn't hit me ver hard. even when living as male, everyone has always told me that I look like the females in my family rather than any male relatives.
Now, I am waiting for my first appointment with the gic here and my gp doesn't seem to want to look into it but it has been a nagging feeling that something doesn't feel right,
So my question basically is, and I can understand how this could be a hard subject to talk about.. If anyone has had as an infant, any surgery what would possible scarring look like if any from it as I have two scars on my abdomen that iv had since I can remember which was around the age of ten. Iv not had any accidents as a child that I have required surgery and I can't ask my parents about it as they both have mental health issues.

[josie76]

It's hard to even guess for sure. Do you have a normal looking scrotum and do you know if your testicles decended normally before birth or right after?
The low T and high E is an interesting thing too. Would you share the test levels with us?
There are so many possibilities but to have high E either your body make much higher aromatase enzyme than normal or possibly you have one or both gonads being ovatestes. This is when the gonads form both testes and ovarian cells.

If you have no memory of any sugery then the scars do raise a flag. Perhaps they pulled you gonads down to make them drop. It might explain abdominal scarring.

[Zoe_Kay]

Hi Jessica,
Its common for parents to hide it from their intersex children (mine did) but the only way to know for sure is to get a copy of your complete medical record and look for any genital surgeries (if its certain kinds of intersex).  Otherwise, you'll need to do a blood karyotyping which can be expensive but maybe not so much in the UK. 

If you have Persistent Mullerian Duct Syndrome, you'll have periodic blood in your urine and semen, inguinal hernias,  and it shows up on an abdominal MRI.

In the end, whether you are intersex or not, only you know who you really are. 

Many hugs and I hope this helps!

[Doreen]

Hi Jessica,
Its common for parents to hide it from their intersex children (mine did) but the only way to know for sure is to get a copy of your complete medical record and look for any genital surgeries (if its certain kinds of intersex).  Otherwise, you'll need to do a blood karyotyping which can be expensive but maybe not so much in the UK. 

If you have Persistent Mullerian Duct Syndrome, you'll have periodic blood in your urine and semen, inguinal hernias,  and it shows up on an abdominal MRI.

In the end, whether you are intersex or not, only you know who you really are. 

Many hugs and I hope this helps!

One of my (many) diagnosis is Persistent mullerian duct syndrome.  I had a left inguinal hernia mesh with a mass removal (didn't know that till they saw it internally later), and I also have pain in the right inguinal region periodically.  Karyotype will not necessarily tell you if you are or are not intersexed. In fact there is a strong chance it won't... keep that in mind.

All of my childhood records were missing other than my birth certificate.

[Zoe_Kay]

Like I said, Karyotyping is just one way to find out about certain kinds of being intersex - but certainly not all!

And I know what you mean about inguinal aches - those can actually menstrual cramps much of the time (if you have at least one ovary).

So your birth hospital has no records?  Or that there were no weird surgeries and thus no records? 

[Doreen]

Like I said, Karyotyping is just one way to find out about certain kinds of being intersex - but certainly not all!

And I know what you mean about inguinal aches - those can actually menstrual cramps much of the time (if you have at least one ovary).

So your birth hospital has no records?  Or that there were no weird surgeries and thus no records?

Literally 'missing birth records' when I asked.  I'm also experiencing constant abdominal guarding and pelvic floor dysfunction, painful inguinal ligaments.. going to pelvic floor physical therapy for it.  Literally the main reason why the abdomen presents this way is because of an inflamed or irritated organ.  My organ, also known as the 'mullerian remnant'.  Ya there's lots of squirrely stuff going on but hopefully I have a doctor that's skilled with intersexed peeps who's willing to do an exploratory biopsy.  Contacting her next Monday to remind her  because she was supposed to contact me last Monday.  Or so I thought she said.

I could easily make the argument I have an ovary.. and I'm actually concerned it may be cystic.  Someday I'll know.

[Linde]

How did you find out that you have an ovary?  I was tested and I have XXY chromosomes, but I have no idea what is going on inside my abdomen!   A genome analysis done for other reasons states that I have the typical genome of a post menopausal woman.   But I don't know what is inside, because if anything, it would be rather small and shrunk down.  I know that I have one functional testicle only.  I cannot remember (my menopause must have been 16 years or more ago) if I had something like menstrual cramps or pain on certain days of the month.

Now I want to become a woman very bad, it feels as if I am trying the body back that was taken away fro me may years ago.
I try to analyse my desire, and i don't feel like many of the trans women here, who feel thy were born in the wrong body.
I feel more as if I was born in the right body, but some person stole that away from me, and now I want it back!

Am I the only one who feels like this, or are you guys in a similar situation?

[Doreen]

How did you find out that you have an ovary?  I was tested and I have XXY chromosomes, but I have no idea what is going on inside my abdomen!   A genome analysis done for other reasons states that I have the typical genome of a post menopausal woman.   But I don't know what is inside, because if anything, it would be rather small and shrunk down.  I know that I have one functional testicle only.  I cannot remember (my menopause must have been 16 years or more ago) if I had something like menstrual cramps or pain on certain days of the month.

Now I want to become a woman very bad, it feels as if I am trying the body back that was taken away fro me may years ago.
I try to analyse my desire, and i don't feel like many of the trans women here, who feel thy were born in the wrong body.
I feel more as if I was born in the right body, but some person stole that away from me, and now I want it back!

Am I the only one who feels like this, or are you guys in a similar situation?

Ultrasound said bilateral ovaries though poorly visualized, it also saw a uterus. Then again I have radiologists that disagree with that finding too. Ultimately I need and AM scheduling a diagnostic exploratory surgery biopsy to find out for sure.   

I just know I always had estrogen production from the time I was young onward. At 21 I was perimenopausal estrogen levels.. around 60.  So whatever I have isn't working that great.

I also have constant cramps and abdominal (lower) guarding that usually means there's an inflamed organ under.  It hurts 24/7 and is quite miserable. Top that with pelvic floor dysfunction and frankly overstimulation of the pudendal nerve, life kind of sucks last couple years.

[HughE]

One thing that gets glossed over is that many of us have physical symptoms associated with intersex conditions. For whatever reason, doctors are very reluctant to diagnose intersex in someone who's assigned male though, so you're unlikely to be told you're intersex, even if there are obvious signs you are.

If you have a copy of your blood work, by looking at it you can actually tell if you (probably) have the commonest genetic cause of intersex, an XXY karyotype (Klinefelter's syndrome). Your testosterone will be low, but your gonadotropins (LH and FSH) will be high, and possibly flagged as above normal. Assuming you haven't yet started HRT, if your total T and gonadotropins are both low, it's more likely not Klinefelter's.

Other than that, you'd need more extensive testing to determine a cause. One problem is that the tests can only pick up genetic causes of intersex, whereas environmental factors during the prenatal period can also be a cause of intersex (particularly exposure to external hormones or hormone mimicking chemicals). If your mother was given hormones of any kind during the pregnancy, that's probably what's done it.

[Linde]

One thing that gets glossed over is that many of us have physical symptoms associated with intersex conditions. For whatever reason, doctors are very reluctant to diagnose intersex in someone who's assigned male though, so you're unlikely to be told you're intersex, even if there are obvious signs you are.

You are very correct there.  It is either because they don't know much about these syndromes, or they don't want to "rock the boat".
Here I was gong through all my adult life without a hair on my body (except some sparsely growing genital hair that stayed nicely down there and did not grow up to my belly button), and no visible Adams Apple, a definitely female jaw line, not much beard growth and zero hair loss on my head, and none of my physicians ever said a single word.  All of them knew that I was a fellow medical professional, and that we could have talked "shop" about it.

It was me who started to do research into this, after my body decided to grow breasts.  And it was me who convinced my physician (an internist) to write an order for required lab tests and other tests that showed that I am an xxy chromosome person, who had never finished puberty and was in the process of doing so (the reason for the growth of my boobs).

[Doreen]

You are very correct there.  It is either because they don't know much about these syndromes, or they don't want to "rock the boat".
Here I was gong through all my adult life without a hair on my body (except some sparsely growing genital hair that stayed nicely down there and did not grow up to my belly button), and no visible Adams Apple, a definitely female jaw line, not much beard growth and zero hair loss on my head, and none of my physicians ever said a single word.  All of them knew that I was a fellow medical professional, and that we could have talked "shop" about it.

It was me who started to do research into this, after my body decided to grow breasts.  And it was me who convinced my physician (an internist) to write an order for required lab tests and other tests that showed that I am an xxy chromosome person, who had never finished puberty and was in the process of doing so (the reason for the growth of my boobs).

XXY and potentially some androgen insensitivity.  It is possible to have both.  Most of my doctors know I'm a registered nurse, and still treat me like a peasant from the underbelly of the hillbilly mountains.  I don't even have an accent from around here, and actually talk educated.

I've learned once they start talking like that to call them on their number. Point out the flaws in their arguments. Example:  One reproductive endo told me a definitive diagnosis 'Didn't really matter as there is no impact on her long term health".   I told him that was bull>-bleeped-< because I'm disabled from chronic pain CAUSED by the condition.  No impact?  And the pain is progressively getting worse.

Sometimes I just hate dealing with it all.  If I didn't have pain, I wouldn't be.

[Linde]

One reproductive endo told me a definitive diagnosis 'Didn't really matter as there is no impact on her long term health".   I told him that was bull>-bleeped-< because I'm disabled from chronic pain CAUSED by the condition.  No impact?  And the pain is progressively getting worse.

Sometimes I just hate dealing with it all.  If I didn't have pain, I wouldn't be.

OK I have a PhD in biomedical sciences, I am specialized in infection control and prevention, you should think  that any physician  would assume I know a little bit of the medical field.  I try to make new docs aware of that, but I am pretty sure, it did not even register with the endo I a seeing.  He really acted as if I was a dumb kid (and I am pretty sure that I am older than he is) from somewhere from the sticks.  I don't know what they learn in med school, after we split in our field of expertise, but it is for sure not good bedside management or patient oriented treatments.
I think they feel like queens and kings because there are not many of them, and they all have a long line of patients waiting for an appointment!  They can afford to be rude and belittling, because they would not loose any business!

[grand_allegro_girl]

You may not have scars, but that doesn't mean you aren't intersex. I'm a 26 y.o. trans woman with partial androgen insensitivity syndrome who "slipped through the cracks," as it were. It's hard to separate my trans experience from my intersex experience, but for what it's worth there are a couple things I attribute to being intersex that may resonate with you.

1) A feeling not just of "wrongness," but also "strangeness." I can clearly remember feeling that I was a girl and not a boy when I was little, but I also remember feeling that there was something somehow aberrant about me. That feeling almost eclipsed the gender dysphoria. I wanted to isolate myself because I didn't feel like I could fit in with girls or boys. The same feeling of strangeness followed me into puberty (which I still haven't fully completed, actually). My body went through a kind of mixed puberty -- first weight gain in my hips and breasts, but everyone thought I was just fat. Then I grew like a weed (I was taller than both parents by age 11 or 12) and got a dusting of facial hair and a slightly deeper voice by the end of high school. It was just enough to make me seem like a normal male, and I think my dysphoria wasn't as strong because I didn't go through full male puberty.

2) Not only feeling that the body doesn't match the mind, but also that the body can't fulfill the gender role expected of it. I definitely experienced gender dysphoria, but I also just had trouble physically being a man. Even when I was living as a male, people often told me that they saw me as more of a "boy" than a "man." I couldn't fake it even if I wanted to. People often commented on my soft baby face and weak muscles, were surprised by my age, and treated me more like a child than an adult.

There's probably more, but those two things stick out the most. Of course your situation may be different, but I just wanted to emphasize that you don't need physicals scars to be intersex--any number of chromosomal or endocrine abnormalities may be more subtle.

[grand_allegro_girl]

I feel more as if I was born in the right body, but some person stole that away from me, and now I want it back!

Yes! I've definitely felt this way before. You are not alone 

[Linde]

You may not have scars, but that doesn't mean you aren't intersex. I'm a 26 y.o. trans woman with partial androgen insensitivity syndrome who "slipped through the cracks," as it were. It's hard to separate my trans experience from my intersex experience, but for what it's worth there are a couple things I attribute to being intersex that may resonate with you.

1) A feeling not just of "wrongness," but also "strangeness." I can clearly remember feeling that I was a girl and not a boy when I was little, but I also remember feeling that there was something somehow aberrant about me. That feeling almost eclipsed the gender dysphoria. I wanted to isolate myself because I didn't feel like I could fit in with girls or boys. The same feeling of strangeness followed me into puberty (which I still haven't fully completed, actually). My body went through a kind of mixed puberty -- first weight gain in my hips and breasts, but everyone thought I was just fat. Then I grew like a weed (I was taller than both parents by age 11 or 12) and got a dusting of facial hair and a slightly deeper voice by the end of high school. It was just enough to make me seem like a normal male, and I think my dysphoria wasn't as strong because I didn't go through full male puberty.

2) Not only feeling that the body doesn't match the mind, but also that the body can't fulfill the gender role expected of it. I definitely experienced gender dysphoria, but I also just had trouble physically being a man. Even when I was living as a male, people often told me that they saw me as more of a "boy" than a "man." I couldn't fake it even if I wanted to. People often commented on my soft baby face and weak muscles, were surprised by my age, and treated me more like a child than an adult.

There's probably more, but those two things stick out the most. Of course your situation may be different, but I just wanted to emphasize that you don't need physicals scars to be intersex--any number of chromosomal or endocrine abnormalities may be more subtle.

I really can't remember what, or how I felt as a little guy.  I think (or am told) that I also never finished puberty.  I was already 40 years old, when people thought I was in my mid 20's.  And like you, I could never really measure up to my male peers.  Later in life I preferred to be mostly with females, because the typical constant (mostly hidden) competition between males is not existing between female (none of the girls has to pound her chest all the time).

I just had the first facial of my life done, and the beautician could not believe that my skin was so soft and almost baby like.  She called her coworkers to show them how "young" and soft my facial skin is.  Still today, most people and facial recognition software make me about 20 years younger than my biological age!  I have to say that my mind is about that much younger, too!  I just have to convince the rest of my body to follow the program!

[Jessicauk]

Hiya everyone, Thankyou all for your replys and I am sorry about the super late reply, my t at the test was 4.7 nmol/L,
I'm not sure how to reply to everyone at once but if anyone would be kind enough to talk more in depth please drop me a pm.  Thankyou so much

[Linde]

 I wonder about another thing, or a few things, and I don't know whether it is because of intersex or if it is just me.
I can't remember that i ever had this kind of dysphoria for my body or body parts.  I kind of knew always that I was living in the right body, I was just robbed of my genitalia.  That my body was right became obvious when puberty came around.  My peers started to look like apes, and here was little me without a hair on the still baby skinned body and still singing soprano (now that I am old, I sing mezzo soprano).  My gender dysphoria was always oriented towards those strong males, of who I was supposed to be one, but never could mange.
I also never developed a clear gender identification, and I still don't have on.  I want to be a woman, very bad, but I can go as a guy for days in a row if it is of advantage to me (car places, Home Depot, etc).  I prefer to go as a woman, but guy mode will not cause any dysphoria to me.  I don't think that this will ever change, because part of me will always be a guy.
I also have no depression, or hardly any, and can get out of a depression period by pulling myself out by the neck.

How is this with you guys/girls, am I alone with this or do you have similar feelings?

[Doreen]

I wonder about another thing, or a few things, and I don't know whether it is because of intersex or if it is just me.
I can't remember that i ever had this kind of dysphoria for my body or body parts.  I kind of knew always that I was living in the right body, I was just robbed of my genitalia.  That my body was right became obvious when puberty came around.  My peers started to look like apes, and here was little me without a hair on the still baby skinned body and still singing soprano (now that I am old, I sing mezzo soprano).  My gender dysphoria was always oriented towards those strong males, of who I was supposed to be one, but never could mange.
I also never developed a clear gender identification, and I still don't have on.  I want to be a woman, very bad, but I can go as a guy for days in a row if it is of advantage to me (car places, Home Depot, etc).  I prefer to go as a woman, but guy mode will not cause any dysphoria to me.  I don't think that this will ever change, because part of me will always be a guy.
I also have no depression, or hardly any, and can get out of a depression period by pulling myself out by the neck.

How is this with you guys/girls, am I alone with this or do you have similar feelings?

My gonads were neither fully male nor female. "Mixed" is the word they used, but they were far too male like for my liking. I got them fixed 

I was also reared as a boy, but developed as a girl.. needless to say I had to change a few things there too.  "Dysphoria" though? Not exactly.  Just.. I wanted everything to agree with the internal image I had of me.  I still do.
Just my thoughts if it helps.

[Linde]

My gonads were neither fully male nor female. "Mixed" is the word they used, but they were far too male like for my liking. I got them fixed 

I was also reared as a boy, but developed as a girl.. needless to say I had to change a few things there too.  "Dysphoria" though? Not exactly.  Just.. I wanted everything to agree with the internal image I had of me.  I still do.
Just my thoughts if it helps.

Thanks, I feel as If I am reclaiming my original body.  I did not really develop into anything.  I basically stayed partly pre-puberty.  I kept the soft skin and did not develop any secondary male or female sex characteristics (except some weak facial hair growth).  I am told that I am now finishing my puberty, and that is he reason hat I am growing boobs.  It seems that i should  have been a girl, and all my genome indicates that i was more female than male, all the time!

And now I want my body, respectively the genitalia that I should have had, and be a woman!

[Jessicauk]

I personally had a pretty underwhelming puberty, I had a little facial growth which has been getting thicker up until this point, I currently have a little hair on my top lip and the bottom of my chin but it takes a long time to grow. Iv always looked a lot younger than my age and iv always struggled to put on any muscle, I have a strange body shape. im 6"2 but most of my height is in my legs rather than in my upper body, my hips have developed strangely to anyone that iv seen they extend quite high (at the sides there is only a very small gap between my ribs and hips).
Although I have no idea what this all means.. Possibly nothing 😂,

Dysphoria wise I have always had it hanging over me but I wouldn't say that it is particularly strong. I have my bad days but who doesn't.