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.
PGAD Support Group For Men and Women – Entry Requests
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.
Spruce says
It is so sad that the medical establishment wont treat conditions like PGAD and PSSD seriously.
I just read an article about two women who took their own lives after suffering from PGAD for years. One woman had the condition for 16 years before she decided to take her own life. She waited so long and tried so hard to help herself, before finally giving up.
In my experience it is often the treatment from the doctors and the medical establishment that often leads people with these conditions to resort to suicide.
In my case the response i have had from doctors over the years has been really, really bad. I still cant get over how bad it has actually been. In fact i cant really think of any ways it could have been worse.
The psychiatrist who prescribed me citalopram which caused my PSSD, still to this day wont accept that my ongoing sexual problems could have been caused by the drug he prescribed. I have been trying to get him to believe me for about 10 years now, even sending him studies showing PSSD exists etc, but he continues to stick his head in the sand, and claim my ongoing sexual problems must have been caused by other factors. I have lost every single last shred of respect for the man, for the way he has been able to ignore the very obvious evidence as to what has caused my PSSD (he has repeatedly disputed that PSSD even exists).
But then recently when i have talked to a large number of pharmacists about PSSD, they have readily accepted straight away that PSSD exists, and have even suggested that it makes sense that the sexual side effects might persist for some people, and they have been sympathetic and understanding about the distress living with PSSD must cause.
It is strange how you can get such a polar opposite reaction from two closely linked professions working in medicine.
Why can pharmacists readily accept and believe that PSSD is real, or at least accept it as a real possibility, while doctors get so defensive and hostile, and repeatedly flat out deny the condition could exist, even when presented with evidence to the contrary.
It really makes no sense to me.
tim says
Thank you for finding the courage and such precise analysis to allow us to gain insight into yet another devastating ADR of psychotropic drugs.
The text so clearly identifies the agony and isolation.
I wanted to respond immediately but after reading and re-reading, I felt at a loss to know how.
That is, until I scanned “PULSE” this morning – a widely browsed G.P. magazine which I have thumbed for the last 42 years.
“OVER 42,000 DEMENTIA PATIENTS ON ANTIPSYCHOTICS” reads the headline.
According to new figures released by NHS Digital: –
“42,991 people (9.4%) out of the 458,461 on the dementia register in England were given the medication in the six weeks to November”.
“It is the first time that anti-psychotic medication prescription data have been released”.
Just a minute, isn’t there a profound prescribing dilemma here?
Shouldn’t there be?
Many of the most serious toxicities of antipsychotics are almost indistinguishable from the progressive, irreversible, intellectual impairment which defines the pathophysiology of dementia: – a deteriorating, destructive organic brain disease.
Most evidently: – the behavioural and psychological toxicities of antipsychotics.
It is generally accepted that psychotropic drugs may be more toxic in the presence of organic brain disease.
This surely increases their risk of antipsychotic induced akathisia, aggression and violence with immense suffering in the now toxic as well as dementing patient.
A parallel exacerbation of anguish and suffering in their families and carers would not be difficult to conceptualise.
The next danger is now antipsychotic dose escalation and psychotropic drug “augmentation” with potential for further life threatening adverse drug reactions.
And what if?
What if these poor people with dementia, with akathisia, with tardive dyskinesia, with their impaired memory converted to stolen memory by psychotropic drugs —
What if they also endure the suffering of PGAD so graphically identified above?
What if in their inexpressible agony they lash out in a desperate, hopeless cry for help in their “Zero Tolerance” caring environment?
R says
Tim.
Would you like to run for Minister of Health?
Eloquent.
Thinking ahead, or even better, right now.
All you said and more.
Why wouldn’t ‘dementia’ patients or any patient brought to LTC facillity outta their own comfortable home, run away?
Ergo: locked door. Ergo: screaming. Ergo: drug to “calm”. Jesus have mercy.
Not to forget, I have heard of enough patients or staff availing themselves of vulnerable patients, sexually etc. They may need to drug ME to stop MY nightmares, and I’m not even afflicted. Take your eloquence to the larger media, on the road or something. Not just a “reply”, please Tim. And all. Thanks.
Katie B-T says
Thank you for sharing this post. I totally relate to the Princess and the Pea analogy. I can feel the metal under the layers of cushions in a chair.
Spruce says
Tim i totally hear what you are saying. It is really bad how vulnerable elderly people are treated. The antipsychotics they give them, can cause all sorts of nasty adverse reactions, and they also shorten their lives, and in effect they are used in a form of government induced cull.
It is a real scandal what has happened with prescription drugs and all the damage they cause. It is almost like a silent holocaust, with many thousands killed each year. I really hope that as like the real holocaust, people eventually find out and this large scale mass murdering of large sections of the population is finally acknowledged for what it is.
Carla says
Any soul that has to tolerate any unnecessary suffering, is indeed, so brave.
I’m so sorry that you have to endure so much discomfort.
It is not right that many have to suffer.
Spruce says
After re reading my last comment, i feel “murder” might be a bit too strong of a word. I doubt the drug companies deliberatly set out with the intention to kill people. But they know the damage these drugs can cause, and continue to sell them en mass, whilst denying the harm done. It is basically the same as murder.
Linda Freed says
Fyi…. back in around 2004 I took a survey on a women’s Psas support group,which it was called at that time. I was convinced that my symptoms occurred as a result of my going off SSRI antidepressants cold turkey. Over 60% of the women responded said they’d been on SSRI antidepressants…paxil being one of the most common. I tried to share my results with many sources. In 2005 I attended the isswsh conference and presented an abstract that also appeared in the 2005 issue of the journal of sexual medicine. Dr. Goldstein was my doctor at the time and still is. Have you contacted dr. Irwin Goldstein in san diego? He and his wife sue run the sexual medicine clinic there ( have to look up the exact name of the practice). You are quite right…everyone tries to mix up a whole bunch of other acronyms when ssri antidepressants are staring them right in the face. LF
Kriie says
I suffered with PGAD for about 8 years, then someone treated me with acupuncture. I had a blessed 10 months without symptoms. Then it came back. My acupuncturist had retired, so I was sent to another one who “read my formula” and after 3 visits I was cured. I spent 2.5 years without a symptom, but the was prescribed Trazadone to sleep. When it made me congested, I went off of it, only to have PGAD start up again! That was 5 months ago and this time, for some reason, the acupuncture treatments didn’t work and I’ve been in hell trying to find more and more information. I wish more people would tell their doctors so that more research could be done.
Van says
Hi Kriie, I was wondering if you ever found an effective treatment. My symptoms started with Trazadone as well and I am very concerned.