I am intersex, transgender, and going through puberty. Help.

[TencentQQmaps]

I started puberty when I was super young.  I noticed dark hair on legs and a very small amount of breast development when I was 10 years old.  I got an x ray recently and I stopped growing when I was 11.  Which is early for a boy or a girl.

Most of the people I see going through puberty in 2 ways.  Early or late.  If I started puberty so early then why does it still look like I am only just starting?  My younger brother was always a lot shorter than I am, he started puberty late, and now he is more than 6 inches taller and looks 3 years older.

I feel like the level of hormones that I have goes up and down.  Sometimes I really do look like I am actually going through puberty and getting older.  Sometimes my chest area gets somewhat larger and I start going through puberty more like a girl.  But then it actually just disappeared.  Two times I think my face might have started to look slightly male, but only just a little bit.  Hair has started to grow and then stopped growing and disappeared.  And then started growing again.  In one month I can look 2 years older and then the next month I look 3 years younger, literally.  It feels like I am going around in cycles instead of going in any certain direction.

I have gotten two hormone tests before for both testosterone and estrogen.  They were totally different.  The testosterone was way lower in my more recent one.  Which is almost 2 years later.  My doctor was confused because that usually that should not happen to anyone going through puberty, I don't think.  I also got FSH level tested and it was super high.

When I got a karyotype test it was XY.  Which was confusing for me because I have Atrial Septal Defect.  Which happens one in every 5,000 babies so it is very unlikely to be a coincidence that I also happen to have other development problems.  Atrial Septal Defect is a side effect of some genetic differences, like trisomies of chromosomes for example.  It could also be caused by some smaller DNA mutations.  Possibly with CAH 3 beta hydroxysteroid dehydrogenase deficiency?

Now my doctor wants to wait 6 months and take more blood tests, a third time, and then try to figure out the cause more.  My mom admits that it is happening I think but she does not talk about it.  She said lets work to be a boy, even with this problem.   My dad at least sounds like he is admitting it when he is talking about getting me testosterone and "chest fat" reduction surgery.  But then when I try to explain it is related to me being Transgender he completely changes, and says everything about me is normal.  He says I am 6 ft tall and look like any other boy my age.  Which is obviously not true.  I think I can easily stop from getting testosterone by making sure he does not feel comfortable admitting this is happening.

Both deeply care about me being a boy.  It is not because they logically decided against it.  It is because it emotionally matters to them.

I keep having abdominal pain for years.  I think I feel like it happens around the same time of the month.  It is different from being constipated, because that also happens all the time to me.  I also have had blood in urine three times.  It was just 100% blood.  There were also some small blood clots in it.  I think it was around the same time as the abdominal pain but that could easily be a coincidence.  It is at least worth mentioning because the whole thing is pretty unusual.

I also remember being in the hospital for something involving my private parts when I was a baby.  I once asked and it had to do with my intestines?  That does not make sense.  I was in the hospital a lot when I was a baby for a lot of reasons I don't know.  I was fainting for an unknown reason, and now I am again but have not been to the doctors office.  But whatever happened during that time I am sure my parents never were unsure at all that I am a 100% normal male.

I am constantly feeling really bad.  All I ever think about is being allowed to be a girl.  At school I am introducing myself as a girl.  And I tell anyone who knew me before I am transgender.  All of my teachers are fine with this.  And my parents do not know about this, I don't think anyone at school is going to tell my parents.  I make sure I wear certain clothing.  Most people think I look like a girl with shortish hair.  But I am very worried about getting a super short haircut.  Because then I couldn't possibly look like a girl.  This is making me feel a little bit better I guess.  But I am still just always waiting to be a girl at home and at school.

Do you have any ideas what could be causing me to develop like this?  And any ideas of what I should do in general?  Even if something randomly comes into your head in a week, it would help me.

[The Flying Lemur]

Wow, I don't have the medical background to answer the question of why you're developing the way you are.  It's great that you know so much about your medical history, though, that will help you advocate for yourself with doctors more effectively. 

I posted in your other thread about trying to collect adult allies to help you when and if your parents find out that you're transitioning. 

Also, even if your parents forced you to get a very short haircut, all hope wouldn't be lost.  There are always hats, headbands, and headscarves.  I saw a young girl with a knit headscarf the other day--it was very cute.  So maybe those are coming back into style.

(Sorry if my post is a little useless.  I just didn't want your thread to have zero replies.)

[josie76]

Early puberty would explain stopping growing earlier. Puberty does coincide with signaling the long bone growth plates to begin calcifying basically stopping height growth. The earlier puberty starts the less average height a person has. That is assuming regular hormone patterns.
It's good you already had a karyotype test however that does not test any particular genes. It only checks to see which chromosomes are present.

I am not a doctor but just a couple of things I've read about that might coincide with your symptoms.
CAH congenital adrenal hyperplasia causes high FSH
Lupus is listed causing high FSH
If you have ovaries internally then something called ovarian failure aka premature menapause.

Blood in you urine is a bad thing. A simple urine sample can be checked in the doctors office with a test strip. Even microscopic amounts can be picked up. It's called hematuria. That in itself needs to be checked out.

[TencentQQmaps]

Early puberty would explain stopping growing earlier. Puberty does coincide with signaling the long bone growth plates to begin calcifying basically stopping height growth. The earlier puberty starts the less average height a person has. That is assuming regular hormone patterns.
It's good you already had a karyotype test however that does not test any particular genes. It only checks to see which chromosomes are present.

I am not a doctor but just a couple of things I've read about that might coincide with your symptoms.
CAH congenital adrenal hyperplasia causes high FSH
Lupus is listed causing high FSH
If you have ovaries internally then something called ovarian failure aka premature menapause.

Blood in you urine is a bad thing. A simple urine sample can be checked in the doctors office with a test strip. Even microscopic amounts can be picked up. It's called hematuria. That in itself needs to be checked out.

Wouldnt it be very unlikely to have ovaries CAH and XY chromosomes at the same time?  I don't think that is usually something that happens unless there is a really big coincidence.  So it is probably something else.  High FSH can be because of just hypogonadism.  But I still don't know why it is happening.

[Paige]

Wouldnt it be very unlikely to have ovaries CAH and XY chromosomes at the same time?  I don't think that is usually something that happens unless there is a really big coincidence.  So it is probably something else.  High FSH can be because of just hypogonadism.  But I still don't know why it is happening.

Hi,

Is this your family doctor that's treating you?  This sounds way beyond a GP, has it been suggested that you see a specialist?  A good therapist probably would also help. Where are you located? 

Do you think they want you to be a boy because of a decision that they made when you were young and don't want to admit their mistake or do you think it's they just want a boy?

If your father thinks that more testosterone will make your transgender go away, he's wrong.  This doesn't work.

Take care,
Paige

[josie76]

Wouldnt it be very unlikely to have ovaries CAH and XY chromosomes at the same time?  I don't think that is usually something that happens unless there is a really big coincidence.  So it is probably something else.  High FSH can be because of just hypogonadism.  But I still don't know why it is happening.

Yes unlikely but given so many unknowns, who knows. The Y chromosome just has one signal protein TDH. This is what triggers the protogonads to form testes. There are members of the forum who have partial unformed ovarian tissues called streak gonads and some who have ovatestes. A few have partially formed uteran organs. TDH triggers one part of the protogonads to form testes cells. This is supposed to happen at 7 weeks. These cells produce a hormone that is again supposed to cause the other protogonad cells to not form ovaries. This doesn't always work. If this hormone is not there or genes for it are mutated then the ovarian cells start forming around 12 weeks. Sometimes the teste cells are slow for some reason and they do produce the hormone but not until some of the ovarian cells are past the point of being sensitive to the hormone.

Fetal development is really complex and everything has to happen just right timing wise to work perfectly. We are all natural variants of humanity.


I urge you to get the blood in your urine checked out. If it was enough you could see it in the urine color, that is a big deal. You should see a urologist to make sure. Microscopic amounts should even be checked out. I have had tiny detectable amounts for years. I have been checked over several times. I did have a tiny kidney stone show up in a CT once. Blood in urine can be caused by infection, kidney stones, but also a tumor anywhere from the kidneys, bladder, or prostate. When all that was OK on me the doctor even had me get a sonogram of my testicles just to be sure.

Talk to your parents about the blood. Ask to see a urologist.