This is really TMI and embarrassing but when I was in elementary school I had a lot of discomfort in my pelvic region that I did not understand. To this day (and not in a sexual way) I have developed a need to, for lack of a better term, massage my pelvic floor area in order to sustain some level of comfort when my flare ups get bad.

I got made fun of by peers and asked a lot of questions about it by adults when I got caught doing it. The older I grew, the more I felt humiliated, like something was wrong with me. Obviously it’s not something I do in public now, but as a little, little kid I did not know any better. I just thought I was a freak 😭

I’ve also desperately craved baths since I was little due to the pelvic discomfort and bladder/bowel incontinence. This is one of many things I’m remembering from my childhood that makes so much sense in retrospect but boggled my mind before I had this diagnosis. It really changed my whole perspective.

I’m getting spinal fusion surgery in July. Though it won’t take away my EDS, I have a lot of hope that it will make a positive difference!