Last year I got a new care manager. She set me up with an appointment with an OB/GYN.

She was the best doctor I'd been to. She was kind and believed everything I'd told her. In the past, I've either had doctors tell me that what I was telling them was impossible or completely stopped helping when the results didn't line up with what they expected. This happened with the last doctor I talked about here. The ultrasound showed I had a vaginal canal, cervix, and after I drank a whole bunch of water to push it down, a tiny undeveloped uterus. But, the ultrasound technician couldn't find the expected markers or ovaries. So, the doctor gave me an MRI, but it didn't show a uterus, so he just stopped helping.

This time, the OB/GYN listened to me, was extremely kind, and couldn't believe I'd gone through all the trouble I'd been through in getting a doctor for almost half my life. I started menstruating at 28 and I turn 45 this year. It's been even longer than that since I started puberty late at 15 and started getting PMS symptoms then - which wasn't too much fun when I was pretending to be a boy while suffering through that.

I had to have my mom hold my hand when she checked my genitals since I hate that part of my body so it was extremely nervewracking. She noted that I had no cuts or infections that would cause bleeding (which was more than expected given that I've been bleeding every six months at the same period (around the 20th) since my 20s so it's obviously not external). She thought that one of my testicles might have been acting as an ovary, but wasn't sure so she got me in touch with a university specialist two hours away.

He said that he is normally a surgeon and doesn't usually deal with examinations but he made an exception when he heard how hard it has been for me to get help. I had my ultrasound and MRI sent to him and he conferred with a colleague at Yale.

My bloodwork came back with estrogen where it should have been at that time in my cycle, but my testosterone was about ten times what it should have been. So, since my body doesn't use testosterone properly, he said I have Partial Androgen insensitivity Syndrome. They have to figure out where the testosterone is coming from. I was diagnosed with gigantism in my 20s as I had two 2 centimeter cysts on my pituitary gland. I get that checked regularly since they were shrunken with medicine and last time they were 2 nanometers each so they were not able to be seen except under a microscope. So, it's hopefully not that, but I let the doctor know just in case.

After he examined me (again I needed my hand held, but this time a nurse took my other hand which was very kind of her), he told me I had ambiguous genitalia (which surprised me because I know I have a vaginal canal since I can push my hand up there as far as the skin over it lets me, but I didn't know my genitals were visibly ambiguous). I have to get bloodwork done for a full DNA test. I had one done at my hospital, but it apparently wasn't complete enough so I need to go to a hospital an hour away. He said that I was born a girl with an enlarged clitoris (which I figured as it's only the size of my thumbnail) and fused labia. I have descended gonads, but they are likely streaked. He said I'm either XX or XY with an inactivated SRY gene.

Given my symptoms, his colleague at Yale believes I likely have Swyer syndrome (XY gonadal dysgenesis). I looked at https://en.wikipedia.org/wiki/XY_gonadal_dysgenesis and I can see why she thinks that.

* The individual's gonads do not have two X chromosomes, so the breasts will not develop and the uterus will not grow and menstruate until estrogen is administered - I only started menstruating because I was given premarin after came out as (I thought) transgender at 28.
* Their gonads cannot make progesterone, so menstrual periods will not be predictable until progestin is administered, usually as a pill - my periods are at weird times - they were originally monthly for about half a year to a year then switched to bi-yearly
* Their gonads cannot produce eggs, so conceiving children is not possible without embryo transfer. I knew I was infertile as a male since my genitals never worked as a male's should. Being infertile as a female too is not a surprise.
* Osteopenia is often present. - I have had spinal stenosis since (at least) I was a teenager

The cancer part is concerning, but I'm getting help now. Because of that, I'm hoping my DNA comes back XX, but Swyer syndrome does seem more likely.

No matter what, after all my tests are over, I'm going to the Cornell University Hospital in New York City to get things fixed. It's five hours away, but I'd go anywhere no matter the distance to finally get things sorted.