Community Conversation > Intersex talk

Not sure if I am intersex

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Rachel Montgomery:
I have been told I have something similar to Kallman's Syndrome.  I have all of the symptoms of Kallman's except that my sense of smell is normal.  The doctor labeled it Idiopathic Hypogonadotripic Hypogonadism. 


I am transgender and have been aware of that since my earliest memories (3-4 years old), though I didn't have a label for it.  I knew I wanted to be a girl, and I was told very plainly that would never happen.  so, I did my best to hide it and act like a "normal boy".  I think I pass as a fairly normal person, though I know that I am transgender.

I had some sort of surgery on my penis when I was about 2 years old.  I remember going to the hospital and ...a lot surrounding that surgery.  I clearly remember the pain when I urinated, which continued for some time after the surgery.  It was traumatic for me, and I was completely unprepared for it.  I was told that when I got older, I wouldn't remember it, but I promised myself to never forget, and I retold the story to myself regularly.

My parents remember that I had the surgery, but claim they don't know what was done or why, just that I needed it.  That isn't believable to me.  Who sends their child to have surgery on their genitalia without an explanation as to what is planned and why?  This would not be the normal course of business for my parents.  They are college educated and fairly sophisticated.  I get the impression that they know a lot more than they are willing to tell me.

Anyway, when I was 16 I still hadn't started puberty and they took me to an endocrinologist.  He diagnosed me as having "Constitutional Delay of Puberty".  He offered me testosterone, and told me it would make me hairy and masculine.  I rejected the offer.  I started puberty on my own at 18.  It was a slow process.  Even at 21 I looked like a high school kid.  But, I eventually developed into a mature looking man.

My T levels have never been above the baseline for normal males, but close.  Then, around 50, my T levels dropped to zero (the lab said they were so low they could not be measured).  This made me feel very sick, and I went to the same endocrinologist.  He diagnosed me as having metabolic syndrome, and started me on Androgel.  I was fairly emotionally stressed over taking testosterone, which emotionally felt like poisoning myself, but I felt so physically ill that I did it.

After a couple of years, I went to a different endo who told me I had something like Kallman's (he said I had IHH).  He explained that something is wrong in my pituitary/hypothalamus axis, and it causes me not to make enough LH (Lutenizing Hormone) and GnRH (Gonadotropin-releasing hormone).  I suspect that this problem has something to do with my prenatal development, and the need for surgery when I was young.  Both endos shrugg at the question and say they don't know.  (how could they know for sure, but I would suspect they have a theory).

Anyway, my question is would having IHH mean that I am inter-sexed?  I know that it isn't relevant to a diagnosis of Gender Dysphoria, but under the definition of GID being intersex would exclude that diagnosis (for some reason).  I suppose it was thought to explain the cross gender feelings whereas GID was unexplained cross gender feelings.  And, I am not really going to bank much on whatever your response to my question is.  But, it is something I wonder about.  I have no idea which doctor is right.  And, I am not sure if whatever is wrong with my physically is responsible or a contributor in my GD.

(P.S. this site has a lot of math work)

Jessica:
Hi Rachel 🌸 Welcome to Susan’s Place!  I’m Jessica.

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Linde:
Hi Rachel, welcome here.
I m a medical researcher,  but not a physician, and I am an intersex person (I have the XX male De la Chapelle Syndrome) with hypogonadism to boot.  Only involved blood tests can determine if you are intersex'
I am genetically a female, but had male genitalia, but there are not so obvious intersex conditions, too.  Hypogonadism is a mutation, and does not count as an intersex syndrome.  My body never developed to be male, and I never had any real puberty either.
from what you describe, i would say you may not be intersex, but definitely have one or several mutations.
You should ask your doctor to probably do a Karyotype Test with you, or if your health insurance would pay it, a genome analysis.
Feel free to ask me questions concerning intersex, and  try to answer them as good as I can.

BrightWindow:
Being intersex is not black and white.

There are five factors which determine a person's physical sex: chromosomes, gonads, hormone status, genitalia, and secondary sex characteristics (I sometimes abbreviate to 2SCs)

For most people these five factors clearly align to one sex. They are assigned that sex, they identify with that sex, and they keep their properties for life. Most of them do not have to take hormones and can at some point reproduce as their preferred sex, the vast majority of them can effortlessly pass as their preferred sex, and by comparison to transpeople who need to pay for surgeries or hair removal etc. they do not need to put much effort or money into looking the way they want to.

Transsexual people are those who may or may not align to the two clear groups, but do not identify with the sex they were assigned at birth. In the last century or so it has gradually become possible to safely and effectively convert genitalia, 2SCs, and hormone status from one sex to the other, which is often necessary for the mental well being of transsexual people. Functioning gonads of transsexual peoples' preferred sex cannot be given (most of them will not have been born with those in the first place,) and chromosomes cannot be changed.

Intersex people are those who for, well I'm finding it hard to express it without sounding at least a little offensive, but reasons which don't include accidents or human intervention such as HRT, do not conform clearly to the two groups. Intersex people may or may not identify as intersex: some may wish to undergo medical treatment to bring their characteristics closer to that of their preferred sex.

I get the impression that being transsexual is much more common that being intersex. Personally I am MTF transsexual (assigned male, identify as female) but as far as I know I am not intersex in any way.

From your OP it sounds like you are at least a little bit intersex as your puberty was delayed and the operation you had as a child sounds like it was probably to 'correct' your ambiguous genitalia (I cannot say for sure why exactly, as I do not know enough about your specific case). If you want to know what your chromosomes are you can have them tested. Other than that you definitely sound a lot closer towards the concept of what a male is than female, but sex is not binary, nor is being intersex.

josie76:
There is a good deal of differing opinions on what counts as intersex. My home state in the US legally defined it however. By that definition I believe you are intersex. It defines it as being any genetic or developmental condition that prevents the full development of the genitals or internal sex organs. Essentially anything that affects an incomplete genital formation or the workings of the internal sexual reproductive organs. So a genetic mutation can definitely count. Also what you describe sounds like a hypospadias repair to the urethra of the penis. This is done when the urethra does not fully close and either leaves an open channel or a whole along its length.

Hypospadias repairs are actually one of the most common surgeries for genital birth defects. Often it is done the same time as a circumcision in the hospital.

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