Like most older intersex persons, I lived a large chunk of my life not knowing why I looked different than my peers. What is disturbing to me is the fact that I am a Mayo patient for more than 30 years, and did all my annual physicals in Rochester. None of the doctors I had over time (internalists), who for sure saw me without clothing covering my body, ever said anything about why I am the way I am.
I have not any adult hair (except on my head) on my entire body, and just a little bit of pubic air (I would compare this to max Tanner 3), and i still seem to have my pre- puberty skin, With other words, I did not masculinize at all. But nobody seemed to care about this?to detect a Y chromosome! Next time I went to the Mayo, I asked my endocrinologist to please initiate a Karyotype test, and he did (with a blood sample) and it came out with XY. This did not provide any answer to my question, and once I asked him he said he thinks I have hypogonadism, but I never was checked for this. I could have mosaicism, and PAIS, who knows?
I wish physicians would have more concern about patients who are obviously different. It might not be medically required, but we want for sure know what is going on with us. For our entire post puberty life, we were either made fun of, or had other negative experiences, and it simply would be good for our well being, to know why we are the way we are. I, for example, developed real female type breast, and I was not really overweight, and nothing was said about this. I also transitioned over to be a female, and i was treated the same as any other trans person, but I never had any kind of dysphoria to be mentioned. I never felt all right as a male, but I am a very happy woman now
I am still not sure why I am the way I am?
I would like the physicians to really take our concerns serious, and not just wipe them aside, and come up with a condition that kind of makes sense, but not really,
Listen to us, many of us are pretty well educated in this field (I have a PhD in biomedical sciences), and work with us. It is very important for us, to know why we are the way we are, to make sense of our life! And not just wipe it aside, because we seem to be pretty healthy to the outside. But we are not, we live with a body we cannot understand!

Thanks for listening!
Linde