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Lingering Anxiety-PTSD during sex

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  • Lingering Anxiety-PTSD during sex

    Hey all!
    I haven't posted in a long time because I've been doing pretty well. I had to up my Cysta-Q dosage a bit, and I've added new medications as I've acquired another chronic condition, but overall, my IC is holding steady for now.
    My issue is this: I've suffered from low libido, low self-esteem, and PTSD flashbacks occasionally, all during and associated with being sexually intimate with my partner. I've been having these issues ever since we got together, which was about 3 or 4 months after I achieved a remission of my IC symptoms. I expected that I'd be struggling at first, since he was the first partner I'd had post-IC, but the problems have persisted, almost 6 years later. My partner knows a lot about my IC and is absolutely wonderful. He appreciates "outercourse" and doesn't define sex by typical P-in-V hetero norms, which suits me well. Pain management during sex has become fairly straightforward; we've been together for 4 1/2 years and have figured out ways to communicate about what hurts and what doesn't, and when.

    However, I've never been able to get over the angry voices in my head that have been there ever since the year I was getting diagnosed and heavily treated for IC: all the invasive examinations, the poking and prodding, the misogynistic comments about how I should be "grateful" that my partner is "okay with" my apparent limitations...all of that stuff made me feel utterly broken, gross, and like a clinical specimen, rather than a human woman who feels pleasure. All of this low self-esteem and trauma has made it hard to enjoy things I used to enjoy, such as receiving oral sex (TMI, sorry guys). I can't stop thinking that something's wrong with me when that is going on.
    Has anyone else experienced a dramatic drop in their self-esteem and libido since their diagnosis, even if their pain is well-managed? I cannot for the life of me find good books about this: most are all about different "techniques" for sex, which I'm not really looking for, or they're pretty general ("just communicate", etc.) I struggle to talk to my counselor about this, because part of my trauma was the feeling of having to let doctors into parts of my body and life that I'd rather remain personal and pleasurable and, well, private. I really don't want more experts getting all over this extremely personal part of my life.

    It'd be nice to know that there are others experiencing difficulty with this as well. I realize why it's happening, and I don't blame myself or anything, but I still feel very alone with this. Anyone out there willing to sound off?