I sent my info to the NVA. Hopefully we can raise awareness about this and have it recognized as a real medical disorder, much like priaprism is in men.
I suspect that it's far under-reported because of the embarrassing nature of it, and it's a big step to take to let your doctor know about it.
Up until now, I feel the media has 'sensationalized' PGAD, making the women who suffer feel like freaks, while giving the condition the wrong kind of attention. The episode of 'Grey's Anatomy' that dealt with PGAD was particularly annoying, because it didn't explain any options other than surgery, and made it seem like that was going to cure the woman, when we know it's not always the case.
The consequences of having a disorder that you're too embarrassed to talk to your doctors about, of not knowing which options to try, of not knowing what might work for you and what might not, can be pretty daunting. Not recognizing it as a disability when people can no longer work, sit, carry on a 'normal' lifestyle, is just plain wrong. No wonder people get depressed enough to consider suicide as the only way out. Feeling alone or abandoned, like 'the system' has let you down, while in this situation could push some in that direction.
I hope that this woman's death will not be in vain, and someday soon those who suffer with PGAD will have a support system that actually works.. It's just so sad she saw this as the only solution to her problem.
