We recently had a PGAD patient in her 80’s. The PGAD (or PGAS) started a few months ago after a head trauma and a broken hip. Her symptoms were classic: constant genital engorgement (she described it as heat and a feeling of fullness) and a burning feeling that was always present and was driving her crazy. Like many PGAD patients she would need to get up and walk around to alleviate the miserable feeling which seemed to get worse when she sat too long.
Here’s the really scary piece — she had tried to commit suicide a few weeks before she came to see us.
That’s how miserable her symptoms were. One of the most heartbreaking elements of this condition is that it is so misunderstood. Most physicians haven’t heard of it, let alone seen a patient with the condition. So in good, classic medical style they tell patients “it’s in your head” (it isn’t by the way — we don’t really get it but we think it’s probably connected to pudendal nerve issues). Or, even worse, they think the patient is crazy or “hypersexualized”. You have no idea how awful it is for a woman who is experiencing constant and severe unpleasant symptoms to be told she’s turned on. She’s not!
We don’t know an awful lot about PGAD, but we do know it’s a real and concerning medical condition that can drive perfectly normal women to the brink. We’ve had a young woman who had to drop out of school, a woman who stopped working, and now this 80 year-old who tried to commit suicide. As we learn more about the condition we will hopefully develop more effective ways to treat it. In the meantime we work with patients, trying to alleviate their symptoms and assuring them…that they are not crazy, and it is most definitely not in their heads.