Hello all, I have not received a diagnosis of any intersex conditions, but I have suspected it for most of my life.
I would often read that you cannot be intersex if you've ever experienced menstruation, but I've recently learned that isn't true, so I'm starting to lean more and more towards thinking this might be my case.
Specifically, I believe I might have non-classical Congenital Adrenal Hyperplasia. Unfortunately, there is not a lot of reading around, and forums for intersex people are often basically a ghost town. I would love to talk to people, and I would also love any resources anyone might have, so please feel free to share anything you might find helpful!
What leads me to believe I might have CAH:
-I am a transman, and have always felt misaligned with my birth gender, even at 5 years old.
-When I was born, I suffered from jaundice, and I was covered head-to-toe in body hair (and more head hair than most toddlers!). My parents act like it was just temporary stuff I went through in my very ugly duckling phase of being a newborn, but with a lifetime of health problems, I hardly think of it as coincidence.
-I started a male puberty at about 7 or 8 years old--meaning, I did not develop breasts or a period at the time, but instead I grew all-over body hair (like, full-grown, ADULT body hair). I grew facial hair similar to that of a menopausal Italian woman. Also, my sexual urges began years before this, and only got stronger over time. I did not experience a female puberty until age 12.
-I had started having severe issues with menstruation in about 10th grade, and all signs pointed to PCOS, endo, etc. I was never tested for these, but accidentally discovered tiny ovarian tumors a few years ago. I don't know exactly what's going on down there, all I know is, it's a mess.
-I have always had more androgynous features. My shoulders and ribcage are rather wide for someone my petite size, I've always fit the average male shoe size for my height, I've suffered from male BO and perspiration, I've had a masculine/androgynous voice most of my life, and I have a cute little Adam's apple (small enough it's not a striking feature, but big enough that all my ex's felt the need to comment on it). Oh, and I've always had the voracious appetite of a growing boy.
-I always just "felt" infertile, so I would never worry about birth control. I had a LOT of sex in my late teens/early 20s, with multiple partners, but only ever had one pregnancy scare. Turns out, I am pretty dang infertile.
-I had to stop my hormones a few months ago, due to costs/lack of money. Yet, my body is still not fully "acting female" again. My body has always seemed to kind of align its gender with things happening to my body, and, as I'd suspected, the high levels of T seem like they've raised my internal T back up (hormonal birth control as a teen seemed to kill my naturally high T levels). I know it can take time for the body to readjust to hormone changes, but that has not been the case. I've always found this aspect strange, but it's also slightly comforting to know that my body adjusts so well to new hormonal environments. A short period of hormones seems to keep my body in check for quite a while.
My lifelong health problems:
I have recently been diagnosed with Lyme's (discovered myself, doctor's testing confirmed). There is a good chance I've had it for up to 25 years (I grew up in the woods, and my parents usually refused to take me to the doctor's to the point I would absolutely consider it child abuse). So a lot of the symptoms are Lyme, but they can also overlap with CAH. Such as my absolute lack of an immune system (I was sick with flu symptoms every single month of my life growing up). My chronic fatigue has been a big player in my life, and even as a young kid, I didn't have the stamina to play like the rest of the kids. As an adult, it can be absolutely crippling (a few years ago, it literally left me bedridden, the only time I could get up was to use the bathroom). I've also had a horrible time dealing with stress throughout my life, and it obviously affects me much more strongly than other people.
That all being said, I've also started fainting since last year, and it seems like that might also be a symptom of cortisol levels being off. I have looked through all my blood test results from the past few years, but I don't see anything on them that would appear to be cortisol levels. Is this hormone commonly tested? What type of doctor would be able to send me for testing?
I know a lot of this seems crazy, but I keep coming back to the idea of intersex conditions, and it's about time I figure out for sure what's going on so I can try to get well. Sure, a lot of these symptoms can be brushed off as other things, but so far, this is the hottest lead to explain my very abnormal puberty, and the fact that it can also explain a lot of my health symptoms is too coincidental.
I'm hoping some of you have some insight to share, or reading you can forward me, but at the very least, I hope my story/situation was an interesting read. Thanks for your time!
