I know this post is now from over 4 years ago but I found it whilst googling.
I also have the condition in both ears and my specialist says it's effecting my cochlear too (based on CT scan images). I'm turning 25 this year and have been wearing aids since 2015.
I'm thinking about the future as I do want to have a child one day. I'm worried about the risk of my ears becoming worse during pregnancy and whether it may be best to consider other options such as surrogacy etc.
I'm curious to know how you got on after posting this and would love to hear from you and any other women who can relate.