By Katie Mercer @katiemercer_BM
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Videographer / Director: Jeremiah Fabre
Producer: Katie Mercer, Ruby Coote
Editor: James Thorne
Amanda McLaughlin has Persistent Genital Arousal Disorder (PGAD) – a rare condition that means she is in constant and at times, debilitating pain in her pelvis and legs.
She said: “I wish the name was different. You say arousal and it sounds like it’s a fun thing to have.
“I get people saying ‘oh I wish my wife had that’ and thinking it’s a joke. But would they want to have a raging boner 24/7? I don’t think so.”
The 23-year-old says that she has to sit on heat pads to relieve the pain she feels and insert ice into her vagina to help with swelling.
For years Amanda, from Michigan, complained of feeling like she ‘needed to orgasm’ but all doctors told her that there was nothing wrong or that she had a sex addiction.
She explained: “From the ages of 15 to 18 I masturbated constantly. Way more than an average teenager would.
“I knew there was something not right. I kept saying, I kept telling people, I need to have sex but nobody listened to me.”
Even her mother, Victoria Enriquez, struggled at times to believe her daughter.
Victoria said: “I still feel guilty. My daughter was telling me she was in pain and the doctors were saying there was nothing wrong. And I believed them over my child.
“The whole family thought she was just a whore and I thought she was a hypochondriac or making it up.”
Amanda was finally diagnosed with PGAD in 2013, having never previously heard of the disorder.
She said: “I looked it up online and found so many other women, and some men, who also have this problem. They understood.”
Mum, Victoria said: “It was a huge relief because then there was something – there was validation.
“She’s not lying, she’s not making all this stuff up, she’s not a whore and she’s not a sex addict.
“I really want the diagnosis to mean that she can find a cure.”
Unable to work or drive because of the condition, Amanda has suffered with depression and anxiety because of the extremely personal nature of PGAD, and the pain that comes with it.
But she has found support in fiancé Jojo Feller, whom she met a year ago. The pair have been inseparable ever since.
Amanda said: “Relationships are really hard to keep with this problem.
“But he never once has judged me, he never made me feel bad about not working.
“It was love at first sight.”
Amanda admitted that PGAD has caused some tension in the relationship and that at times, she has had to beg Jojo for sex to try to relieve her symptoms.
In turn, Jojo wants to keep sex from feeling like a chore and instead something special the two share.
Amanda said: “It affects our sex life quite tremendously – you’d think that you could have sex and it would just go away, but it doesn’t.
“Sometimes I will be crying and begging him to have sex with me just to relieve some of the pressure that I have down there.
“And it doesn’t feel great, having to beg your man for sex."
JoJo met Amanda at a party of a mutual friend and she was open with him right from the start.
Jojo said: “When she first told me I didn't know how to feel about it but I liked her so I was prepared to jump in.
“I just try to support her and learn as much as I can.
“The more I can learn, the more I can help her. I'll help her so she can get anything she needs.”
Amanda is now seeing a specialist at Michigan University and is taking thirty different medications – which have rotted her teeth - to help ease her symptoms.
She has had procedures to numb her nerves, but any successes so far have been found to be only temporary in nature.
Dr Priyanka Gupta, assistant professor of neurology at Michigan University is working with Amanda and is still confident that there is hope.
She said: “Because it’s such a rare diagnosis and there’s been such little research into PGAD, we don’t know exactly what causes it. We suspect it’s multifactorial.
“I don’t have a quick cure for this, and I’ve spoken with Amanda about that. We’re going to be trying out a few different therapies and I’m very hopeful that we can get her functioning better.”