Told I will probably be denied sterilization even if I test positive for being a carrier for a TERMINAL genetic disorder because I’m “too young”

I’m furious. I’m 21, just went to my GYNO to get my first pap (not fun), and decided to ask about her getting me tested to see if I’m a carrier for DMD (Duchennes Muscular Dystrophy) because there’s a program that provides free testing to women with a family history.

DMD is a genetic disorder that only women can carry but only affects men. Medical advancements have been made but it’s still unlikely that men with DMD will survive past their 20s-30s and it’s a terrible disorder to live with.

My mom had two older brothers who both had it and she had to watch them both deteriorate in front of her and die before the age of 20 because this was back in the 70s-80s in rural WV and they didn’t have access to the (limited) treatments that were available back then.

She lucked out and ended up having 4 girls so she has no clue if she’s a carrier or not because women typically don’t exhibit symptoms. One of my older sisters has a little boy but he’s not old enough to be diagnosed yet so we don’t know her status either. I theoretically have a 25% chance of being a carrier since my mom’s status is unknown, but if I am then I have a 50% chance of passing it on (either having a girl that’s a carrier or a boy that actually has the disorder).

I don’t even know if I want to be a mother but even if I end up wanting kids I would never want to risk passing this on, it’s expensive and draining and a living hell for everyone involved. I have an IUD now but if I end up being a carrier for this I don’t even want to risk it unintentionally, if I find out I’d rather get sterilized NOW rather than risk a 25% chance (that would be the chance of having a boy with DMD) of bringing a child into this world with that condition.

My OBGYN said she’d happily apply me to get tested but told me even if I end up being a carrier it’s very unlikely that I would be able to find someone willing to let me get my tubes tied at my age. She’s usually great but she said even she wouldn’t recommend it because “IVF is an option”…. What the actual fuck? That’s already so expensive and with a condition like this you have to go a step further to make sure that the specific embryos don’t carry the gene.

I want to scream. I hate the medical system. This is terrifying to me. I should be able to elect to permanently get rid of the chance of me having a child if I find out that I’m a carrier for this no matter how young I am.