When Karina Winter tells people she lives with a condition that leaves her body in a constant state of sexual arousal, the reaction is almost always the same.
“People laugh and say, ‘Oh,my God, how lucky!’ But it’s not pleasure – it’s torture,” the Christchurch mother of three bravely shares.
“It’s like you’re sitting on the edge of an orgasm all day, every day, but never getting the relief. Your toes curl, you go all stiff – but there’s no release.”
For almost three years, the Invercargill-born 52-year-old has been living with persistent genital arousal disorder (PGAD), a condition that causes relentless, unwanted physical sensations of arousal that have nothing to do with desire. The condition is so rare, many medical professionals have never heard of it.
Karina says, “My doctor dismissed it as anxiety or depression because I was living in fight-or-flight after trauma.”
A sensation that never lets up
She is referring to an abusive relationship that included psychological abuse and ended in a violent assault at the hands of her former partner of three years. The attack left her with multiple long-lasting injuries, including bruising down to the bone and a head injury.
Police urged her to leave town for her own safety, so Karina fled to Christchurch, leaving behind her life and possessions. That was in August 2023. Since then, she’s spent years working on her recovery through physiotherapy, concussion clinic, rehabilitation and counselling. Sadly, none of the specialists has had an answer to her PGAD.
Karina, who has Ngāti Kahungunu, Ngāti Porou, Kai Tahu and Ngāti Tūwharetoa heritage, defines the sensations as tingling, pulsing and twitching through her pelvic area, like she’s on the cusp of an orgasm– but with no end.
“It starts the minute I stand up in the morning,” she shares.
“Concentration becomes difficult because the sensations dominate my attention and drain my energy. By the end of each day, I’m physically and emotionally exhausted.”
Searching for an answer
Karina has spent years trying every treatment suggested to her, including specialist pelvic physiotherapy, internal massage, medication, high doses of a SSRI, TENS therapy, dry needling, hot and cold therapies, nerve-focused treatments and more.
“The gynaecological physio did something to me one week that set me off for four days. I was turning myself inside out – it was horrific. “From what I’ve read, there isn’t a recognised treatment that works for everyone because they still don’t fully understand what causes it. “Women have had PGAD start after childbirth, perimenopause, back injuries, endometriosis and assaults. There are theories it can be nerve damage, internal injuries, scar tissue, cysts or neurological changes – but nobody really knows.”
“The worst thing is that it doesn’t show up on an MRI or X-ray, so you can’t prove what’s going on. You look completely normal while you’re battling something that’s consuming every second of your day. “ACC has been amazing helping with treatment of my physical injuries from the assault, but I’m still fighting to get PGAD covered. Those symptoms kicked off after the assault, but unfortunately PGAD is not an officially recognised standalone mental health condition in the classification system ACC uses.”
Breaking her silence
Karina, a counsellor who works in mental health, addiction and domestic violence, says her condition isn’t something she shares with many people.
“It’s not a nice discussion to have with your boss,” she tells.
But she’s bravely sharing her story with Woman’s Day in the hope that someone will recognise the symptoms and put a name to what they’re experiencing. On a personal level, Karina desperately hopes that someone will know how to help her.
“For me, it feels as though my nervous system has been hijacked. Every day is a battle to manage overwhelming physical sensations while trying to appear functional to the outside world. Suicide in people with this condition is huge and you can see why.”
One bright light was meeting her partner Lexx, 48, through mutual friends. They’ve been together for two years. She credits his patience and kindness with helping her trust again after her past relationship.
Karina admits, “When we first met, I told him I wasn’t ready for a relationship and he said, ‘That’s OK. I’ll wait.’ He’s the gentlest, kindest man. He buys me flowers every week and just wants me to be OK.”
Navigating intimacy
Living with PGAD has changed the way they navigate intercourse.
“Sometimes intimacy can help. Other times it can make things worse. It’s a constant balancing act. But he’s never frustrated by it or by me. Lexx has reminded me that good people do exist.”
Today, Karina continues working in restorative justice, mental health and crisis intervention, supporting others through trauma while managing her own invisible battle. It’s one of the reasons she’s sharing her story.
Karina concludes, “It’s embarrassing talking about it, but if my story helps even one person get diagnosed, makes one doctor recognise the symptoms or brings a solution to help me, then going public will have been worth it.”
Shine’s domestic violence Helpline is 0508 744 633 and takes calls seven days a week, 24 hours a day. For the Suicide Crisis Helpline, phone 0508 TAUTOKO.
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