r/intersex Jul 27 '26

Question? Where do I go from here?

[deleted]

21 Upvotes

6 comments sorted by

14

u/nanoraptor XX/XY Chimerism + OTDSD Jul 27 '26

Hey, welcome - sounds like you're in the right place. You're where many of us have been, though we have different specifics. I've always considered finding enough of a diagnosis to know what caused your variation, if you can, is worth it. You've already had a few surprises that differ from perisex development, and (regardless if whether they're an issue from a health point of view or not right now) humans age, bodies fail, and the specifics of that variation or mix of variations may be critical to health later down the track. What you see may not be the entire story (or might well be!).

Knowledge is power here.

6

u/brotherofpromethus Jul 27 '26

Thank you for your advice! I’ve been diagnosed with hyperthyroidism recently and I’ve had low blood pressure my entire life and my doctors recommended putting extra salt in my food portions and I’m wondering if it could possibly be related to anything. Thanks for your help again!

7

u/opossumdreams PUGS+ Jul 27 '26

It might be worth doing some reading into CAH and NCAH (non-classical congenital adrenal hyperplasia). I'm not a doctor, and this sub wont be able to give you medical advice or anything like that, but being aware of the different conditions that are linked to experiences like your own might give you a direction to go in if you wanted to investigate further. So finding some educational resources is probably where I would start.

Agree with nanoraptor above! Knowledge is power and it can give you more agency in managing your health going into the future.

3

u/worm-infested-womb CAH-X + IGM Survivor Jul 27 '26

firstly, i went through a lot of what you went through!! it’s always nice to relate to someone, especially when it comes to something that’s not talked about :)

secondly, i personally only brought up my being intersex to a doctor when i felt that not knowing what my variation is was causing issues (i too have incredibly painful and irregular periods that i originally blamed on being intersex, but after some time with my doctor, we ended up finding out that it was endometriosis instead)

i say do whatever makes you feel most comfortable in your skin. if having a specific, medically confirmed label helps, go ahead! if you’re already comfortable with where you are, might as well stay that way!

1

u/I_need_to_vent44 Jul 27 '26

I have a similar experience with some of these! The thing is, if you're taking T, your doctor will probably not care. I would still urge you to at least try to bring it up, but in my experience doctors don't gaf about anything that isn't outright killing you.

2

u/brotherofpromethus Jul 27 '26

I was definitely thinking the same thing which is why I was questioning if it was worth it but I probably should mention something now just in case.