I have not been diagnosed but I believe I have had this for 10 years. I told doctors when it first began, but I was dismissed and told to go to counseling. I was treated very poorly. I was having many unwanted orgasms a day, often one after another for days on end. After a year or two I confided in a pastor about it, I was desperate for help as my mental health had become so bad because of this. The pastor told me that demons were having sex with me. Since the doctors had never heard of anyone feeling like something was having sex with them before, and the pastor had heard of it I believed the pastor, which added more shame and fear. I have learned to deal with it (there is a lot in the statement) and I have days that are not as bad as others. I've even gone a couple months without unwanted orgasms sometimes but the sensations of arousal happen most of the time.
Last week, I went to a gynecologist for other pelvic pain, it was my first pelvic exam in over 8 years, and she said I was having a lot of muscle spasms in my vagina. I did not share any of my sexual symptoms with her because of shame and I thought nothing could be done anyhow.
When I got home I researched pelvic dystonia (I was diagnosed with generalized dystonia 5 years ago and thought it might be that). I eventually found articles on PGAD for the first time ever. I had no idea this is a medical issue! I had no idea others women experience this!
My doctor referred me to pelvic floor PT for other pelvic pain but now I think I might try being honest with them about PGAD too. I really hope they've heard of it and don't dismiss me.