ID: a reply to this post by @ami-long-ago which reads:
Wait I’ve never heard of PGAD but i looked it up and finally figured out what the really weird and uncomfortable side effect I had from going off antidepressants was! It was arguably one of the worst symptoms but I couldn’t find anyone else online listing it as a side effect.
I think I experience it other times but not very often. I always thought it was the beginnings of a UTI but it’s never actually developed into that, it was just so weird and I didn’t feel like I could explain it well to doctors or even friends. end ID
fuck i can't thank you enough for being willing + taking the time to share this!! i've read basically every piece of shitty scientific literature i can get my hands on but haven't actually talked to someone else who's experienced it, so that means a lot to me, & i've actually got two poems about pgad being published tomorrow (!!!) which i've been nervous about so this really reminded me why i'm doing it 🫶💓
there's very limited literature (not that i want anyone to talk to a doctor about anything they don't want to; lord knows i've fucking rehearsed how to keep this a secret from mine) but i definitely remember reading about at least one, probably a few people who developed pgad going off an antidepressant!
the most robust / least misogynistic theory is it's neurological, interrelated with restless leg syndrome, neuropathy, and/or Tourette's. (ofc there can be additional causes bc sometimes people develop similar symptoms for different reasons.) this definitely isn't a medication that works for everyone but starting gabapentin (which addresses nerve pain & restless leg) massively improved my quality of life & helped at least one person in the literature.
my involuntary movements & pgad have further lessened after i started using a cpap, which makes sense since that also can potentially help manage RLS
it totally makes sense that you had such a hard time articulating what you were experiencing – one of my many frustrations with existing medical literature about pgad is the vagueness about What It Feels Like, using words like "uncomfortable," "different," "painful," & even "difficult to describe." there's a reason pompoison's piece about pgad is titled "The Feeling Without a Name."
that's the question i always start with when writing about my experiences with persistent genital arousal & spontaneous orgasm: what does this feel like? at its worst it is so all-consuming it engulfs any attempt at language, but in periods of lower intensity, it feels equally difficult to look back & describe.
obviously poetry is a different sort of language than is allowed in a medical environment but i really hope my work can help connect folks with more ways to think & talk about our experiences.
thank you so much again for sharing this with me 💓💓
