Community Conversation > Intersex talk

Not sure if I am intersex

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Rachel Montgomery:
My doctor won't do genetic testing.  He says it is unnecessary in my treatment, and he will not order it.

Do you know of any labs that do genetic testing for individuals without a doctor's order?  If so, do you have any idea what test I would need done?  And, if I pay for it personally, would my insurance company have a right to see it?

Rachel Montgomery:

--- Quote from: Linde on December 13, 2019, 10:42:11 pm ---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.

--- End quote ---

As I said above, my doctor says he won't order genetic testing.
--- Quote from: BrightWindow on December 14, 2019, 06:14:45 am ---
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).

--- End quote ---

Physically I am a fairly normal male.  I suspect that the surgery was to repair hypospadias and a urethral stricture, based on the scaring and my recollection of what happened.  From what I have read, these are common complications of Kallmann's (which I don't have because my sense of smell is normal, but I otherwise fit all of the diagnostic criteria).     again, he says I have IHH, which he says is the term for Kallmann's except with normal smell.  My first Endocrinologist diagnosed it as Constitutional Delay of Puberty and Metabolic Syndrome (which clearly would not be intersex).  I don't know who is right.  I just know they are different diagnosis's  based on the same symptoms, and they have the same treatment regimen.  Having the same treatment, my doctor says genetic testing is a waste of money he will not order.  "it wouldn't change the treatment or the outcome, so it is a waste."

Maid Marion:
National Institute of Health pages on Genetic Testing.

Call it intersex or not, the definition I found is that IHH is " due to deficiency in or insensitivity to gonadotropin-releasing hormone (GnRH) where the function and anatomy of the anterior pituitary is otherwise normal and secondary causes of HH are not present".
So some genetic cause of insensitivity to GnRH. This when combined with underdeveloped penial urethra could be qualified as an intersex condition. Especially if it also caused delay in normal pubescent development.

Based on all of the most recent years studies on the gender specific segments of the brain, your body's lack of T production because of a partial insensitivity to GnRH could be how you ended up transgender. But its still only a more likely link than a definite one. Studies done on larger patient sets of brain MRI's has repeatedly identified the IFOF region of the brain as being one area that is hard-patterned in the second trimester based on the level of exposure to testosterone. Some studies done prenatally identified base neural patterns that were expanded upon as the person grew. Others found the pattern established in the prenatal period could not be forced to charge later either by puberty or even cross hormone treatment. So anything that interferes with the level or sensitivity to testosterone in a genetic male fetus has a chance of preventing the masculinization of the brain.

The science is pretty interesting. I am PAIS and a trans woman.
Among PAIS patients (male born), studies have concluded that gender identity is approximately 50/50.
Among verified male born children who were exposed to the endocrine disrupting drug DES, greater than 30% report severe gender dysphoria.
Similar statistical links can be found where androgen receptor activating drugs were administered when female born children were prenatally treated. Such drugs as non human progestins.

If you have development irregularities, and your family physician and your endocrinologist have a different opinion on the cause, one can assume that something is not right.  But what it is can be determined only by testing.  If neither your endo nor you doc is willing to order some tests, it might be time to switch providers.
In the beginning of my journey I was visually analyzed to either have a Klinefelter syndrome, or PAIS.  Once I was tested, it turned out that neither guesstimate of my providers was right!
You could start with a simple swab test to look for DNA, and if you will be put into the analysis as a gender opposite to yours, the test may come out with a failure warning.  This way you would have some kind of idea, if you are XX or XY.  Tese tests run between $100 to $150, if paid out of pocket.  That would provide you with a rough idea.  If your gender outcome is opposite of the gender you present, it is time to do some serious testing to avoid some possible cancer situations.
You have to be pushy , because if you don't stand up for yourself, nobody will!


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