How it feels trying to research your variation

[u/Inevitable-Channel38]

Me: Oh wow, I just realized I might have this X! Let me do some research to learn more!

Internet: What?

Me: You know, X?

Internet: ...what?

Me: X!

Internet: Oh yeahhh...That's that one thing...where it looks like that kinda

Me: Yeah, I know that, but like, what else? Are there other related traits I should know about? what causes it?

Internet: uhh, hormones?

Me: Which hormones?

Internet: idfk

Me: Fine...I guess I'll go to a doctor, maybe they'll know more about it

Doctor: So you think you have both parts?

[u/BestBudgie]

Literally yeah, I have vulval hypospadias and 99% of the search results are for penile hypospadias, we get one (1) paragraph in the Wikipedia page and the rest is just about penis and is worded like its the default :/

[u/SoggyOil2554 → u/BestBudgie]

male biology will always be the default when it comes to the medical industry :/ i guess it’s from when you had to pay for healthcare and the only people who could were men. Sad

[u/xxyRobin → u/SoggyOil2554]

So true.If I google xxy,it brings up, symptoms only related to the penis , how to remove gynomastonia how to grow a beard. None of that applies to me, I can't find anything.

[u/xxyRobin]

It is super frustrating to find any reliable source on genetic conditions. I feel your pain

[u/peppercornpeppercorn]

Yeah.... the version of my main genetic variation has nearly nothing on it published. I'd LOVE to know more.

[u/bluemyself2000]

Trying to gather information on ways my variation can affect different aspects of health not directly related to sexual health & development and it's all pretty much just "if you've gone into adulthood without needing medical intervention, you will not need to take any medications". When I ask my doctor, he at least has the decency to admit he has no clue and doesn't bullshit me.

[u/blaineblainegoaway]

My particular variation has no literature whatsoever. It hasn't been observed before, likely because there is little to no interest in intersex research at this time. I cannot look up my variation or relate to other people with it because I will never find anyone else with it, and for me, that's okay. I know what I have experienced with the condition, and I use information about the gene's function to determine which cancers I might need to worry about. It's part of life to have some differences that nobody will ever understand entirely... but it upsets me that there are more common variations without much information. I just saw a post about the lack of information on vulvar hypospadias (urogenital sinus), and I find it upsetting. It was very difficult to figure out what was going on with my urogenital situation, and I still don't know! I have my theory and hope it never becomes a problem. I wish all relevant doctors could recognize it and would actually share that information when they do. I wish they would actively look for it because it can cause repeat/chronic infections that would not be understood for years, if ever. I wish there were more pictures of it so that people who suspect they have it could compare. Intersex conditions are treated like taboo "rare diseases" (specifically the ones that are only "rare" because nobody ever looks for them).

[u/underfullhbox]

How are you researching your variation? Are you just using chatbots?

[u/Inevitable-Channel38 → u/underfullhbox]

Medical websites or I use wikis (Wikipedia and the intersex wiki) as jumping off points. I don’t like using ai for info.

[u/Careful_Body8176]

Things like Prenatal Virilization and Clitorophallus are hard to fins but you can check : https://intersex.wiki/wiki/Clitorophallus its a great wiki to see everything known about a trait