Imagine: sitting with friends – maybe a couple of people you have never met before also present – having supper. You’re uncomfortable; it’s hard to sit still. You try hard to concentrate on the conversation – the political turmoil erupting around you, or a film someone’s just been to see – but you can’t.
Because the discomfort between your legs is unbearable. It fills every space. Then the cat brushes your legs and jumps lightly, as cats do, on your lap. The movement triggers a real-life When Harry met Sally episode – only you can’t throw you head back and act out an orgasm – even though this one is all too real. Except it’s painful, not pleasurable.
From then on, that evening, every movement sets off another explosion until you make your excuses and leave. The journey home in the car is punctuated by one involuntary and uncontrollable orgasm after another. At home you do what instinctively you can’t help but do – like scratching an intolerable itch – and shut yourself away and try and relieve matters yourself. Only it doesn’t. The orgasms aren’t pleasurable because they are utterly unrelated to desire, or feeling sexy or horny. They are simply unbearable.
Eventually, in desperation, you get a large pack of Birds Eye frozen peas out of the freezer – these days you always have frozen peas to hand – wrap them in a tea towel, lie down in bed and clamp the ice-block between your legs and hope in a few minutes to get some relief.
Other women have described not being able to stand anywhere near the washing machine when it’s spinning as the vibrations set everything off. Travelling by car or bus. The shower. Holding a child on your lap. Walking upstairs. Putting your knickers on. Someone putting a hand on your knee, in a totally friendly, platonic way. Any minor sensation can trigger an acute attack of something called ‘persistent genital arousal disorder’.
It started, in my case, about a year after I’d tapered off psych meds. After a decade of zilch in the sex department, while on all the psychotropic drugs, I assumed – because I was told – that sex disappears because I was depressed. A sex life is, apparently, completely unimportant if you are mentally ill. I’d given up on the whole idea – and was mightily surprised when I felt what I’d not felt for so long. That’s alright then I thought. That bit has reappeared.
Only it hadn’t because desire rapidly took off like a bushfire (!) and flamed into something which remains one of the most unpleasant physical experiences of my life. Pleasurable it was not.
I started trying to find out if anyone else had experienced anything similar. Back then, a few years ago, all I found were a couple of articles in the tabloid press. Looking past the sensational headlines (Woman has 1000 orgasms a day!!!!!) they did pretty much describe what I was going through. I could find no academic references to something, which felt, to me like a form of female priapism. Then, five years ago, there were no anecdotal accounts or single case studies that I could find either.
In desperation, late one evening I emailed someone I knew, a relationship and sex psychotherapist. She sounded a bit mystified, suggested that what I described sounded like a form of priapism and advised me to see a GP. Dream on. Having spent over a year having all the usual legacy effects of psychotropics (deranged balance, hearing, peripheral neuropathy in hands and feet) dismissed as psychogenic, the very last thing I was prepared to do was sit in a GP’s room and tell him that my genitals were unbearably uncomfortable.
Like most women in my situation I problem-solved the situation myself: avoided any stimuli that made it worse: (heat, tight knickers or trousers, the cat on my lap), as far as possible and resorted to a frozen pea ice pack when it became unbearable. In time, the acute flare-ups subsided but left a constant dull ache, like toothache. There is never a time when I forget, but I live with it.
PGAD is gaining more interest. The fact that PGAD has nothing to do with sexual desire or pleasure, and is starting to be recognised as a problem, is progress. But what is striking is that the authors of such papers are virtually all male and they are still, to a man, maintaining that the disorder is as rare as rocking-horse shit.
There is a deal of fumbling around possible causes: psychological trauma manifesting as experiencing sexual desire as painful.
There is a tentative attempt to look for some physical cause. Varicose veins in the pelvis, some connection with chronic cystitis and a debilitating condition called pudendal neuralgia, which causes chronic pain. Restless legs too.
But the startling thing about those studies is that hovering around in the background are references to the affected women having taken antidepressants/SSRIs at some point. No one seems to have joined the dots and considered the possibility that PGAD might be connected to medication. The fact is just noted.
My guess is that PGAD is anything but ‘rare’ – it’s just not the kind of thing women talk about much, especially older women, for fear of being deemed neurotic or ending up with some insulting diagnosis of psychological/psychosomatic/medically unexplained symptoms. Plus embarrassment.
Sexual health professionals may be moving slowly towards accepting the intensely distressing condition as physical and painful, despite being rather coy about using the word pain but the media sure isn’t. A recent article on PGAD in Metro accurately describes PGAD but the click-bait links surrounding it make depressing reading: ‘9 mistakes people make when booking a sex worker’, ‘Airbnb pop up brothels’. ‘Why do so many women have rape fantasies’.
There’s a way to go.
Editorial Note: PGAD is a mirror image of PSSD, PRSD and PFS. It also brings out the links between these conditions and interstitial cystitis, restless legs syndrome and akathisia.
It has driven women to suicide and to horrific treatment options. See PGAD video
There are related conditions. A coroner in Manchester recently returned a verdict on a young woman who committed suicide because of Pelvic Floor Dysnergia after taking amitriptyline. Amitriptyline is a serotonin reuptake inhibiting antidepressant used in ever increasing amounts as a treatment for pain – along with pregabalin, which can have similar effects. There are likely many other conditions like this triggered by treatment – all stemming from changes closely related to the actions of these drugs in producing PGAD.