u/peppercornpeppercorn

https://preview.redd.it/wkm8lbx09qeh1.png?width=962&format=png&auto=webp&s=383e113c9834f5f305825652c2d34f199d5e85f1

Apparently this is the hot topic on the sub right now, I didn't expect this to make such an impact so that's pretty cool!

Here's an update on this project. I made some edits to the original diagram's wording (I actually misunderstood what "vaginal vestibule" meant, corrected that, then decided I might change up how it's visually represented a bit later but this is functional for the moment), and had some helpful people contribute their hypos as examples!

With this project, I want to show anonymized examples of REAL people, not hypothetical vague shapes as diagrams.

I don't 100% have the format and details solidified yet, but I'm really glad even the original post I made has been helpful for people since there's so few examples and talk about vulvar hypospadias, especially compared to penile hypospadias. I'll keep working on formalizing this and adding examples as folks contribute, feel free to critique or make suggestions of what would be the most helpful/informative/easy to interpret.

If you'd like to contribute, message me! These will be added to the file anonymized, no username or anything attached in any iteration of this project. It's been the most helpful when people send their own labeled sketches, but descriptions work too, then you can critique the diagram I make before it gets added to the file. I am NOT asking for photos.

I've been saying that it seems like my majora are a lot more like unfused and empty scrotums than labia majora, but is it actually majora hypoplasia since the fat pads never formed? There's some skin there for sure, it's not like complete hypoplasia with there being a flat area, its just empty skin. I assume those two things are different since one is the lack of development, and one is the partial development of something else, but I don't know how similar that looks.

I haven't posted much in a while bc life has been super busy, but I finally got appointments with basically the only intersex specialist clinic I could find in the US that wasn't pediatric. I had my geneticist appointment first and we did a gene sequencing kit, which seems like the info will be released in sections bc I only got a few results out of the 50+ tested? I have a "variant of unknown significance" related to CAIS/PAIS which lines up with my low sensitivity to testosterone, but not much else. Is it possible to have PAIS with a uterus and underdeveloped ovaries? Or a similar condition? I was told that yes I might have some sort of androgen insensitivity but since it doesn't explain a lot of my other symptoms/traits, I could be "unusual or mixed DSD", I guess I'll find out more in 3 weeks when I go in to see the endocrinologist or maybe before if the geneticist gets more info than I got sent.

Even though things aren't conclusive yet, I already feel a sense of relief. I'm not trans, not cis, just weird confused and honestly miserable trying to navigate life. If I finally get some answers I think it'll really help my mind rest.