VOICEOVER: It's not fun to be aroused all the time.
Would you want to have a raging boner 24/7?
I don't think so.
It's just nonstop.
PGAD is Persistent Genital Arousal Disorder.
It feels like you're about to orgasm, and then it never goes away,
so it's sharp pains all the way through your legs,
all the way through your pelvic...
It's just nonstop.
When I was like 13, 14
is when I first started noticing that there was something wrong.
No-one ever believed me.
I kept saying, like, "I need to have sex. I need to orgasm."
When I was 15 to 18 stage,
I masturbated way more than a normal teenager would.
I first noticed that something was wrong with Amanda
when she first became sexually active.
She was having sex a lot.
I didn't know what it was. My whole family thought that she was just...
..a whore.
VOICEOVER: Everyone thought that it was just a sex addiction.
If I could go for the rest of my life without having an orgasm,
I would... That's fine.
Honestly, back then, I was frustrated,
because I started to think that she was just a hypochondriac.
I doubted her completely. I still feel guilty.
WHISPERS: Sorry.
Sorry.
Your child's telling you that they're in pain,
and the doctor's telling you that, basically, it's nothing.
And I believed the doctor over my daughter.
VOICEOVER: Some days I do OK,
and then some days I don't want to be around anyone.
I don't want anyone to look at me.
I don't usually leave my house as it is, but, I mean,
I don't even want to be on social media.
I don't want to do anything.
It was a huge relief when we found out that it was PGAD,
because then there was something.
There was validation that she's not lying,
that she's not making all this stuff up,
that she's not a whore,
that she's not a sex addict.
VOICEOVER: He takes care of me on days that I can't move,
on days that I'm, like, having full-on panic attacks
because of how much pain I'm in.
Relationships are very hard to keep, with this problem.
He never once has judged me.
He's never made me feel bad about not working or anything like that.
When they say "love at first sight", it really was.
When she first told me, I didn't know how to feel about it,
but I liked her, so I was prepared to basically jump in.
The more I can learn, the more I can help her.
I'll go with her to every appointment, injections...
I'll help her so she gets anything she needs.
VOICEOVER: It affects our sex life quite tremendously, actually.
You would think that you would just have sex and it would go away.
It doesn't, and sometimes I will literally be crying,
begging him just to have sex with me,
just to relieve some of the pressure that I have down there,
and so, when you're begging your man for sex, it's kind of difficult,
because then it makes you feel like crap, like, "Why don't you want me?"
even though you know that's not what it is.
VOICEOVER: I told her...
I was like, "I don't want sex to feel like a chore."
I want it to be something special,
which is why we kind of cut back on it.
I sit on an ice pack.
Sometimes ice doesn't help,
though, so then I have to go to the heating pad, and then
sometimes the heating pad doesn't help, so I have to go back to ice.
I have ice inserts that I can stick inside me to help with swelling.
Because it's such a rare diagnosis and there's been
so little research, we don't know exactly what causes it.
We suspect that it's multi-factorial,
from, you know, several different issues.
Amanda and I have talked some about the fact that
I don't have a quick cure to this,
but that we're going to be trying a few different therapies.
VOICEOVER: I just wish the name was different,
cos the "arousal disorder" part makes it sound like
you're aroused, like, "Oh, yeah, that's awesome."
It's really not fun at all.
I don't know if we have a cure yet,
but I definitely think that we have not exhausted our treatment options.
I am very hopeful that we can get Amanda better
and get her functioning better.
My whole life would be different if I didn't have this problem.
If I wasn't in pain all the time, I might be able to work.
I might be able to drive. I want kids in the future.
My whole life would be different.
I know I would be happier.