Amanda McLaughlin from Michigan, describes her rare condition as a state of continuous arousal and pain, which has been diagnosed as PGAD.
Amanda, 23, has Persistent Genital Arousal Disorder (PGAD) – a rare condition that means she is in constant and at times, agonizing pain in her pelvis and legs. She discovered this problem in her teenage years. Whenever she tried explaining it to someone, no one believed her. And because of her condition, she is unable to work.
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.”
(Scroll Down For Video)
To relieve the pain, she has to sit on heat pads and insert ice into her vagina to help with swelling. For years, she 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.”
Her mother, Victoria Enriquez, also struggled 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. She had never previously heard of this 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.”
Due to the extremely personal nature of PGAD, and the pain, Amanda has also suffered from depression and anxiety issues. Her condition prevents her from working or driving a car.
But a year ago, she met Jojo Feller, her fiance. He has been very supportive of her and they 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 their relationship. 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 to be a special experience between the two.
She 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.”
The pair met 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 to help ease her symptoms. The medications have rotted her teeth. She has also had procedures to numb her nerves, but with only temporary success.
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.