questioning whether or not I have a UGS or v-hypospadias but all I know is that my urethra is definitely way lower than it should be (it's just hard to tell bc I have slight vaginal prolapse due to hyperandrogenism)
I have no idea where the urethra "should be" exactly because all of the diagrams of vulvas are exaggerated for educational purposes and most of the time when I ask things I just get the peritypical answer of "well! every vulva is a little different!"
I just started seeing a new primary care doc bc the disabling symptoms of my CAH have been real bad as of late. She's been great but I have trouble advocating for myself due to CIMI attempts in the past
I'm so sorry you've had to deal with medical abuse in the past. i'm really proud of you for still seeking out care even in spite of how that has affected you! i hope your doctor continues treating you with the respect + care you deserve.
for myself, two things i found helpful in locating the urethra were 1. it's uncomfortable to touch, which if you have largely typical sensation elsewhere, can help narrow it down, and 2. i was able to use a mirror while sitting on a toilet in such a way where i could watch myself urinating & see exactly where it was coming from. but depending on your situation, those may or may not be useful. ik having a sleeve hymen that alone made it difficult to locate, so i sympathize. if it helps at all this post includes some more realistic diagrams & general guidelines for what's peritypical vs what isn't.
i will say that even if you aren't 100% sure where it is, you are sure it's lower than is typical, and you have other intersex variations. so personally, if you find the experiences of people w vulval hypospadias/UGS to be similar to your own, you are welcome on this blog. so many people with vh aren't fully sure because there's so little information out there on... well nearly everything to do with the vulvovaginal system. so in many ways "im not certain if my situation counts as vh" is in itself a very common experience with vh!
if you haven't already, i recommend checking out interACT's medical resources for patients for some support w self advocacy. they have a toolkit you can print, fill out & take to the doctor that helps you establish your needs & situation without having to describe it verbally. there's also a guide to your medical rights as an intersex person. if you have anyone you trust i def recommend asking if they can come with you to your appointment and help you advocate for yourself. there's a lot of things we think we have to do esp in a medical situation, that isn't actually required. so smth like writing out what you need beforehand and giving it to them rather than trying to explain verbally might seem silly, but it's 100% within your right. anything you need to do to make getting real, helpful medical care easier on you is smth you should pursue.
best of luck & feel free to send in another ask anytime, even just to vent 🫂
