Affecting my sex life… (24F and 27M)

I’ve had numerous yeast infections over the years of being sexually active until one day I couldn’t figure it why I have a “paper cut-like” cuts down there that won’t seem to go away. I would have negative tests for yeast infections, UTI and STD’s. Then finally, my GYN informed me that I have lichen sclerosus on my perineal area.

I was giving clobetasol cream for the flare ups and I use it twice a week. I often get flare ups after sex, and sometimes I wouldn’t even know I have flare ups until my boyfriend penetrates me (feels weird saying that word lol) and I’d gasp from pain.

I’ve noticed that I’ve been avoiding initiating sex or making excuses to my boyfriend when he does initiate because I’m so scared of feeling pain. I feel so guilty saying no but he is always understanding. I’ve been saying no lately and it’s making me feel guilty. I used to just want to have sex anytime and anywhere, but now I have this condition. It’s so frustrating. Even just a couple of tissue wiping after going number 2 in public (no choice because I didn’t bring my wipes), I would feel the papercut feeling for dayyys. I would use aquaphor to create some kind of barrier so that my pee wouldn’t sting.

Does anyone else have this problem? How do I stop feeling guilty for saying no to my boyfriend all the time. I honestly want to stop that because he feels as if I’m rejecting him constantly. We’ve established that I initiate from now on temporarily until I figure out how to deal with down there. We’ve also spoken about using lube so I don’t “tear” down there from dryness, have non-penetrative sex, or anal sex (we do this tons but lately I’ve been a mess too with my hemorrhoids lol).

Would love some tips and advice :)