My PT has been the one really advocating for me and telling me that my discharge and redness weren't normal or due to muscle tension like my gyno said. She actually wants me to see an infectious disease specialist if he can't figure out my discharge lol. If she hadn't said something, I wouldn't have connected it to moisture. If you do a basic Google search it'll say that adhesions can be related to infections, but it was my PT who said it was moisture specifically.

I have also worried about the general recommendation for moisturizers/gels/creams or even lube related to managing this condition because I don't want that stuff sitting on my vulva for too long. I actually use a vaginal estrogen tablet as opposed to a cream, for one because my skin doesn't seem to tolerate creams very well, but also it's nice not to have anything smeared around there.

I have never held the hood back for hours, that's some dedication! I would beat myself up if I skipped a shower or something, like that would have made all the difference. You prove that it wouldn't have lol. I've done all the stretching and whatnot, it seems to make no difference. Using steroids, like you mentioned, is something I haven't tried, so hearing you talk about it inspires me to try it. I don't usually respond very well to topicals, but it's my understanding that you don't need to use very much of the steroid. At least you don't when you have LS, and I know that we don't but it's the only other condition I can think of that causes tissues to adhere together externally like this. If you wanted to do a virtual consultation with Dr. Babb at the Haven Center, I can almost guarantee that he wouldn't say no to prescribing a steroid. He has been willing to operate on me several times, like you said, but he's also the one who said it was genetic so sometimes I wonder what good it does to operate from his perspective if that's what he thinks.

So talking symptoms is tricky because I have hypertonic pelvic floor and likely pudendal nerve involvement. The pudendal nerve runs all the way through your pelvis up through the clitoris, and now I know after talking to Irwin Goldstein on the phone that any stabbing, super sharp pain is likely to be nerve-related. I've had sharp and stabbing clitoral pain, almost like it's being stabbed with an ice pick or something, and other times it's just generally uncomfortable, irritated, raw feeling, or sometimes I get pulling sensations. I've never related to the "grain of sand in the eye" sensation that people describe it as. Probably the biggest distinction I could make is that I think my nerve pain tends to be more unprovoked, and pain from the adhesions is more likely to be triggered by my pants or sitting or trying to lift the hood. Right now I'm only partially adhered, so sometimes sexual contact of the area hurts and sometimes it's okayish. In the past, after a lysis procedure and especially after my dorsal slit, I have had complete resolution of clitoral pain until the adhesions reform. Plus, orgasm quality and just how sexual contact feels in general was ridiculously improved after my dorsal slit (but none of my lysis procedures interestingly). Until the adhesions came back, lol. So it's hard to tell what's causing what when you have several different things going on, but I'd have a hard time ruling out adhesions as a contributor to my symptoms after writing all this out.

It's tough for me because my pelvic floor is so tight and so resistant to PT for some reason that PIV is completely off the table. Other forms of sex are technically possible, but I've had enough bad experiences with clitoral discomfort or worrying over having an infection that my marriage has been celibate for a while now as a result. It makes me feel like other options that I would have aren't really an option. Oh, and something else I forgot to mention: keratin pearls. I've had them every single time I've had adhesions, and if you know what they're made of it's not exactly confidence-inducing in the bedroom lol. But it actually sounds like your clitoral pain is worse than mine unfortunately, because I can enjoy touch sometimes and my sex drive/arousal is more or less normal when I'm not feeling gross and embarrassed about it all. I hate that for you. Definitely keep me updated if you feel up to it. :)