Venus Not Rising
Editorial Note: Returning to the theme of the RxISK Prize…
Reading the weekend newspaper, some months back, my eye was caught by a flame red haired women in a turquoise dress who said her occupation involved testing sex toys. The article was impossible to ignore and there was nothing for it but to contact Venus O’Hara afterwards.
What Venus doesn’t know about Sex
Sixteen years before I had had a patient who if she had known about Venus’s website would almost certainly have consulted it and tested out the products. I can still remember her in my clinic. She had flame red hair and was wearing a green cardigan. She made it uncomfortably clear to me that she had tried everything to try to extract some response from her genitals. She could rub them with a hard bristled brush and feel nothing.
SSRI antidepressants cause a genital numbing. Close to everyone who takes them, female or male, young or old, will have some element of either genital numbing or irritability within an hour of their first pill. This is something we’ve all learned to live with.
Doctors tell us this is part and parcel of the effects of the treatment but not to worry that it will go away once we stop. If it is very important to us and we need to be more functional for a weekend we can take a break in the treatment. My lady said this is what she had been told but she was now off treatment for nearly 6 months and the problem was just as bad as it had been when she began.
Was it the bromide she asked? I must have looked very puzzled. But her question made perfect sense. She had been taking citalopram hydrobromide and in her efforts to find an answer to the problem had researched every bit of what these drugs do and came across the fact that bromides were once used to curb sexual drives.
A few weeks later as chance would have it a journalist asking me about SSRIs in general asked me if I had heard anything about them causing enduring effects. I hadn’t. But thinking about my woman, I asked the journalist what she knew about enduring effects and she said it was just something that she had heard about and wondered. I knew she was on an SSRI and was left with the impression that she too might have enduring effects.
That same year, 2001, Sandra Leiblum reported on 4 cases of persistent sexual arousal syndrome. Leiblum was a psychotherapist. Her paper reported on 4 ladies – two their 30s, one in her 60s, and one in her 80s who had developed a genital irritability that could sometimes be relieved by masturbation or repeated intercourse but only with difficulty.
In almost every woman’s background you can find a set of factors that might explain a problem like this but Leiblum wasn’t convinced that this was where the problem lay, even though her patients had all been screened medically and given a clean bill of health. Their problem seemed out of all proportion to what might be expected from a psychological difficulty.
A few years later others began to pick up on her descriptions and around 2005 what later was called Persistent Genital Arousal Disorder (PGAD) by some and Restless Genital Syndrome by others was established, a condition we now know is in many cases linked to SSRIs.
Around the same time a number of people were putting PSSD – Post SSRI Sexual Dysfunction – on the map. This was what my lady in 2001 had. It is now clear that some of those who wrote the first reports around 2006 of this condition knew of people with enduring sexual dysfunction that had begun in the early to mid-1990s. Some people had already spent 10 years with enough numbing to be able to rub chilli paste into their genitals and not feel it.
PGAD and PSSD wipe-out normal functioning. Those affected have been driven to take extraordinary risks. Women with PGAD have tried or been persuaded by their doctors to take opioids and Lupron, gabapentin or SSRIs in an effort to handle the problem. Some have had a clitoridectomy or had the nerve to the genital area destroyed. Some have had Electroconvulsive Therapy to see if it would help. Others have committed suicide.
The PSSD online forums have included health professionals who have worked through every possible manipulation of the serotonergic and dopaminergic systems with pills to see if they can reverse the SSRI effect. They have tried treatments like Viagra and other aphrodisiacs. Not unlike the AIDS community in the 1980s, they have turned to more dangerous drugs available through the internet and even chemicals used as insecticides. And they have committed suicide.
In the case of PGAD while it was initially thought that these women had issues it is now increasingly clear that the condition stems from injury to nerves in the genital area or the endocrine changes linked to the menopause or a range of drugs such as the SSRIs.
The problems the drugs can cause are awful. The response of the medical system has been nearly as bad. Doctors have simply not believed patients. In particular when faced with patients claiming that the problem only started or got dramatically worse after they went off treatment some doctors have laughed at them.
But in fact we have known that in principle that some of adverse effects of drugs may only start after you stop treatment and that they can continue for years afterwards. There is a little know condition caused by antipsychotics called tardive dyskinesia which does exactly this. It was first described by 1960 and we still don’t have an answer.
In the case of PSSD an almost identical syndrome post finasteride syndrome (PFS) and Post retinoid sexual dysfunction (PRSD) occur following treatment with Propecia (finasteride) by young men who are trying to avoid going bald and by both men and women taking a retinoid such as Accutane for acne. It is difficult to think that there can be good news in the midst of so much distress but we are closing in on a likely cause and possible remedy for these problems and it may be that finding a cure for just these kind of problems will open up a whole new generation of drug development.
Writing to Venus
So it was an obvious to write to Venus and ask if anyone like my patient had been in touch with her. They probably wouldn’t have used terms like PSSD or PGAD. Maybe they were contacting her but she was not aware of what it was that was driving the contact. She could, it seemed to me, do a great deal to help raise awareness of the problems if she were to put something on her site.
Venus never responded. Maybe she’s too busy.
I wrote to Cosmopolitan – if it was a choice of an article in Cosmo or the Lancet, Cosmo would be win hands down – offering to write a compelling piece about sex toys and PSSD. The section above was just to give them a taster or where an article could go.
I’m still waiting.
We need any of you out there who have contact with anyone who can help raise the profile of these issues to get in touch with ideas about what might be done.
Seems like Cosmopolitan and Venus are about as interested in PSSD, or PGAD as they would be in Ven(us)ereal Disorders.
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Leave a Reply to susanne
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Almost a year ago i sent a letter to my ex GP, who along with my ex psychiatrist had prescribed me citalopram.
I explained how badly PSSD had affected my life, and how i had been left devastated by the condition. I included a number of studies and Rxisk articles showing PSSD was real etc.
I asked the GP to respond to my letter, and left an address for him to respond to.
To this day i have never received a response to my letter, or any acknowledgement it has even been read.
A while before sending the letter to the GP, i also sent in a letter to a councillor i had an appointment with who worked at my local mental health services.
The reason i sent a letter to this councillor is that i had explained to him the distress PSSD had caused me, and how the disbelieving attitude of the psychiatrist, and very defensive attitude of AWP, had greatly compounded the distress the PSSD had caused me.
It became apparent very quickly that the councillor was aware of my complaint against the psychiatrist, and not only did he also become very defensive, but it became very clear he was firmly on the side of AWP, and had very little understanding or sympathy for my plight.
My mind advocate had to prompt the councillor at least 3 times to respond to my letter. I never got a written response from the councillor, but did end up getting a phone call from another woman who worked there, who offered me an appointment with another psychiatrist to discuss my ongoing sexual problems. Unfortunatly i had to leave the country before i could attend the appointment, as a close relative had become seriously ill. I have yet to return to the UK.
The point i am trying to make is my advocate had to pester the mental health services (who are under AWP) over many months for them to eventually give me any response whatsoever.
Once you are damaged by these drugs, no one wants to know. You are on your own, and it is rare that people will believe you or have any empathy for the level of distress and discomfort you will be left with.
I have also been mocked and ridiculed about my sexual problems by a number of GP’s, a scientist from the MHRA, and even a woman from the Parliamentary Health Service Ombudsman. I have gone into this in previous comments.
It is a desperatly lonely place to be in. My mother is about the only person who has believed and supported me through all of this, and if it wasn’t for her, i genuinally believe i may not be alive today.
I have been lucky to have my mother and now i have found the Rxisk organisation who also believe me. But i have heard of people having even their own families not believe them, and their families siding with the doctors in saying the lasting problems cannot be from the drugs.
I would never have believed i could have been treated the way i have been in a democratic country like the UK, until it happened to me. I still wake up some mornings and think back over the experiences i have had over the last 10 years since developing PSSD, and think ” i cant believe this has all happened”.
The level of denial and almost patholgical inability to recognise the damage some of these drugs can cause, is like something out of the 1984 book by George Orwell.
If the PHSO acknowledges your complaint then they are F * C K E D – because there’s millions of people out there with the same thing.
It’s the PHSO s job to obstruct the complainers and to protect the profits.
This is such a unbelievable tragedy that has happened to us. Being labeled as mentally ill (depressed, anxious) is the best excuse for psychiatrists/doctors to fool themselves on how this condition is not real. They don’t even think maybe just maybe we are right. I was hopeful this ignorance was limited to where I live but as I researched I found out that this is something universal. No one ever believes us. They think these pills do miracle and there is no way they can cause persistent adverse effects. I have been experiencing exactly the same feelings as Spruce or other people do. Every morning I wake up with panic attack and can’t believe this has ever happened to me. It seems we are neglected by those who we trusted. Those who pretended to wanted to help us but instead ruined our lives and now they don’t even want to admit their “safe drugs” did this to us. So much conspiracy and ignorance… . I feel trapped. I can’t even speak out. I’ve been told indirectly to keep my mouth shut because I am depressed and I have no right to say what is real. It is so fuzzy. “I’ve never heard these drugs can cause this”. Why though? People are being silent? They suppress the voices? The condition is rare? Would like to just know why is that?!
It is very sad that many people have to be treated poorly, when they have been damaged by a prescribed medicine (s).
The people who maltreat people, who have been impacted severely by prescribed medicines, are sadly ignorant and not open to the fact that along the way some harm does occur.
Why would some patients want to make up stories?
Those who turn families against each other, is not only pathetic but childish.
They play their filthy games whilst you are left wondering what the hell is happening.
Sadly, those who suffer have a long and lonely journey ahead of them but nothing justifies the criminal behaviour of those who have your best interests in their hands.
Everyone has rights however, sadly, once the system wrongly and unjustly labels people, there is no avenue that anyone can turn to for some descent support.
Ignorance is bliss and when you try to educate the ones who are in the ‘so called healing profession’, their only response is to: judge, label, ridicule and mock.
Honestly, who would of thought that in this day and age, this kind of behaviour by ‘so called’ educated professionals, goes on?
It is easier to mentally defame the people who have been impacted by these prescribed medicines than to admit negligence.
Everyone is too busy feathering their own nests because accountability, transparency and admitting that harm has occurred from prescribed medicines is too damn hard to prove.
I do not believe that for one moment it is coincidental especially, when you have many come forward and tell their similar stories.
Where is the empathy or compassion for humanity, especially when many have suffered at the hands of those who believe their hands are clean.
There are no winners when people are harmed or die as a result of ‘so called safe or robust prescribed medication’. There is no such thing!
I think this song reflects well what it is like to be stuck with PSSD as a young person.
Slowly aging over the years and decades as you slowly lose your youth and looks, and your opportunities to find the partner you really want, lessens a bit with each passing year
https://m.youtube.com/watch?v=Y-zYaT-okk4
“Knowing neon lights, but missing all the stars”-
You can still be around women and youth culture, but with PSSD and without your sexuality, you are not really a part of it, and cant enjoy it.
“All the sad, young men, choking on their youth”-
A slow strangling of your youth which you are powerless to stop.
“”Autumn turns the leaves to gold, slowly dies the heart. Sad young men are growing old, thats the cruelest part”
Watching your life slowly rot in front of you, while you watch others enjoy relationships and sex, while you are sexless with numb genitals; until eventually you realise you have turned into an old man and it is too late.
Thats how it feels to me. I feel my youth and life is rotting away with each passing year, and i feel powerless to do anything about it, and no one recognises or believes what is happening to me.
No one should have to endure the humiliation and the distress of what these prescribed meds, induce.
In addition to this, people (who ever they are) do not need to add to people’s distress, by further lack of support, empathy or sympathy.
People just want acknowledgement, support and understanding for what they are adversely experiencing.
It is inhumane and degrading to those who suffer in silence.
The donations seem to have slowed down or almost dried up I can’t think of anywhere or any one else to contact – any suggestions? Is there an actual group in mind which is likely to be in receipt of the 100,000 when the total is reached ?
Suzanne
Good question. There have been several pledges that are slow materializing, and one or two that have dematerialized. We’ve also had some strong media links – in the Venus o’Hara territory – who I would have thought could have done a great deal to help spread the word. I haven’t given up on these but its the old story everyone wants good news not grim news.
I’m happy that we will get to $50K.
The plan always was to hold out for a cure and award the fund to whoever comes up with one. I feel pretty confident that the answer lies in a short fibre neuropathy – something that several of those linking up with us have pointed to. In the next few weeks we plan to tell everyone more about SFN and how to get tested for it. If it turns out the tests are very expensive, one option might be to use part of the fund to help people get tested.
If we have a test that establishes what the problem is, perhaps that will incentivise people to find a cure. It will certainly help direct efforts which at the moment stretch from chasing brain leads to liver leads and exploring the role of Vitamin K and other factors.
This all takes time. The biggest leads have come from regular contributors to the blogs who despite no background in these areas have done some ingenious researching and come up with great leads.
If the leads still don’t lead to a cure, what happens then? We are slightly stuck in that there have been some very large anonymous donations. It’s not possible to give everything back although we could give a lot back. The alternative is to find some use that will benefit sufferers from PSSD, PGAD, PFS and PRSD. We are open to any ideas people may have. Not a cent of any donation has been spent on overheads or anything and there are no plans to spend a cent on anything other than something beneficial for sufferers.
Any and all ideas welcome
David
I certainly feel that all donations were freely given and that all donors would, hopefully, be far happier to see the money used for the benefit of sufferers rather than returned to them as individuals.
Might it be an idea to gather together the experiences of as many sufferers as possible – of ALL adverse effects rather than this particular group alone ( I say this purely to have as many contributors as possible) – and put them together into a book? Some of the Fund money could perhaps be used to pay for someone to oversee the work of editing etc.
The final volume could be sold and profits added to the Prize Fund. The sale of the books would put many stories out to the public which would also serve as warnings of possible problems with psychiatric drugs.
Without a ‘closing date’ for the Fund, or for ‘finding a cure’, it is surely impossible to know for certain whether a cure is likely to be found or not?
Mary h
I agree – “all donors would, hopefully, be far happier to see the money used for the benefit of sufferers rather than returned to them as individuals.” My donation was modest but I’d rather see it used to help all sufferers of adverse effects, legacy effects, withdrawal problems than get it back. Quite what, I don’t know but something that contributes substantially to making docs. and psychs, policy makers, drug safety agencies, governments etc. HAVE to sit up and take notice. Their dismissal of what happens to real, live people is not far short of criminal.
I think that getting to 50k against the odds would be a great achievement. I really would like to see it used for the tests so that those who have suffered for along time would have some hope. If it turned out to have good results – the media would then have their story..and hopefully be more willing to spread the word . I guess those who donated anonymously are probably still reading the blog -so they could respond to a message asking them what they want to do – shame they are big donations but they could be left in the bank until the rest of the money is used up for testing?.. I anticipate some people who have had bad expeeriences with GPs will have resistance from them if they ask for referrals or tests so advice about that would be useful? . They would be contributing to research even more than they have been already by sharing very detailed personal information , so as well as paying for the actual test expenses to get to wherever the test is carried out and the cost of copies of the results could be offered ?
Dear Dr Healy,
I will go to the neurologist on Tuesday morning. Could you suggest what tests should be done to look at small fiber neuropathy? I thought about asking for EMG/ENG, although not sure which area of my body should I tested. I have genital anesthesia (including nipples), but I don’t know whether they will test this area or what is the best place for testing this. I know there is nerve biopsy as well although it is a harsh invasive method…could you suggest which test is best to perform and where?
Thank you
Janie
Its going to be a week or two before we have a post on what people should do worked out
David
Spruce and Carla explain so well two points (amongst others) which make my blood boil.
One is the way people experiencing such horrific and embarrassing-to-discuss side effects, are humiliated and not believed by those whose duty, we assume, is to be there for us, especially the final port of call, the Health Ombudsman in Spruce’s experience and no doubt that of many others.
Carla mentions families being split and set against each other. We have very much experienced this, after Olly, our son’s, dire experiences with Accutane for acne, leading to his death. Apart from us, his family and his doctors did NOT believe him. I can’t swear to his having discussed much in detail about sexual dysfunction with us, because he was a very private and independent young man. He would have blamed himself for it anyway, and wouldn’t have wanted the embarrassment of it. And what were we likely, in our then ignorance, to have replied, even if he had done? “Oh, gosh, well you should tell your doctor to see what’s causing it.” And sure as eggs is eggs, the doctor would no doubt have said, as they did when he expressed suicidal thoughts, “it’s your Anxiety again old chap.”
How come, people may ask, that someone like Olly gives up on living and departs this world? So loved by his parents and friends. Because when you are suffering but you can’t get anyone in the medical profession to believe you, and then even others in your own family, who should be behind you in extreme adversity, dismiss your confidences ‘because if you were right the DOCTORS would help you’; if you are in terrible pain and all your pleasure in life has been annulled, no one else but mum and dad standing with you, of course you give in and leave, especially if antipsychotics given for Anxiety cause such voids in your thinking that you can’t even remember who or where you are for short periods. Terrifying. Olanzapine plus Sertraline after Citalopram and Venlafaxine did that to him.
A dismissive psychiatrist and a narcissistic woman both sounded his death knell. The former told him (in front of us and the MH Team) that he knew he would kill himself but he had no one to blame but himself, he was in for a terrible life and had brought it on himself!! We listened, aghast. When we politely protested, we were told in so many words, that we were talking nonsense. We simply tried to explain about the effect Accutane had had on him. We even wrote it down for him and The Team. No one reacted.
The woman, who had targeted him, around this time sent a text on her mobile to mutual acquaintances of theirs stating, after one evening together “I’m not putting up with this. He cried all night in my arms like a baby. My sons are more of a man than he is.” (she had sons almost his age!). She sent this text around, and he saw it. So his reputation, as he saw it, both medically and socially was ruined. And the odds are, maybe indeed he cried but doubtless because the SSRIs were making him feel emotional and maybe his sexual prowess was lacking, which would have been awful for him in front of such a Jezebel.
Even now, the rest of his family do not want to hear any of this. He’s dead. We are not allowed to explain why. We should just move on, they say, not dwell on what happened and why. But till we do, we cannot get closure. We need them to learn from this, to understand others like him. Is it a truth they just can’t face, or do they delude themselves, as the medics do, because to believe it would open the legal and emotional floodgates.
And, Spruce writing about young men ageing – absolutely right. We just had another Debate week before last in Westminster about the dangers of RoAccutane isotretinoin. Afterwards, one of the parents in our Olly’s Friendship Foundation group who attended, gave ITV an interview. He read out the suicide letter of his son who died two months after our son. He was 26 but first took the drug when 16, stopped it 18 months later as it triggered Anxiety. James Sillcock wrote that he deeply regretted taking it. He said he used to love life, he’d been so lucky before. Now he lived in ‘despair, missing and regret’. He wrote ” it hurts so much when the world moves on but you just can’t”. He meant that the drug had so mentally and physically ruined his mind and body that seeing friends able to get on, socialise, have relationships etc was heartbreaking knowing he couldn’t join in all this any more. I would guess on the PSSD side, and seeing the years passing as James did, Spruce would well understand.
Isn’t all this, cruelty of the very worst kind?
Heather what happened to your son was nothing short of a crime, and also a tragedy, and you have my deepest sympathies. Dont stop fighting for justice, even though i know how hard it is to continue to try and get the people responsible to acknowledge the truth of what happened. And the response from that doctor you mentioned was appalling, although after the experiences i have had from doctors, i am not in the least bit surprised.
I am still very, very, angry about how i have been treated by doctors since having protracted withdrawal problems from benzodiazepines, and developing PSSD. Very angry!
As far as i am concerned the word GP doesn’t stand for general practicioner anymore; it stands for general prick!
I swear on my life all the nasty responses i got from the doctors really happened. There were even a few i havent mentioned, there were that many. And that woman from the PHSO was the worst, even daring to say “and those sexual problems” in a mocking tone, before deciding she was “bringing the conversation to an end”.
I have also had a lot of conflict within my family caused directly or indirectly by these drugs. My sister barely speaks to me anymore, and has basically written me off as a lost cause. She cant understand how withdrawal could have lasted so long, and is scathing of the fact that i was unemployed for long peroids of time during the last 10 years.
Because i didnt look that unwell while going through benzodiazepine withdrawal, she is under the belief that there wasnt really anything wrong with me, and not working was a choice etc etc.
Also other family members have made comments about me being unemployed for long peroids, and have also noted i have had few girlfriends. There have even been suggestions i might be gay (which i am not). I cant really tell them that i have basically been chemically castrated by the doctors and my genitals are numb and i cant have any sexual feelings. I doubt they would believe me if i told them anyway.
The benzodiazepine withdrawal and the PSSD has put a strain on my family relationships, friendships, and of course my romantic partners. It leaves no stone untouched when it comes to affecting your relationships.
The effects of these drugs have meant i have become estranged from large parts of my family, i have lost childhood friendships when they couldnt understand why i was ill for so long, and i have lost so many lovers/ or potential partners over the last 10 years because of PSSD, that it would take a while to count them all.
I have lost earnings from years of not being able to work. Lost opportunities in getting on the housing ladder. Lost opportunities to develop hobbies i couldnt do when i was ill in withdrawal (which went on for years). Lost time with my sick father who died of cancer last year. The list goes on and on.
I dont feel my life was damaged by these drugs. I feel my whole life was completely RAPED by these drugs. Not just my sexuality, but my whole life. That is what it feels like.
I lost almost everything, in almost every single aspect of my life.
And no one understands or believes what happened to me.
I believe u mate and totally understand where your coming from because I’ve experienced most off what you have described it is beyond disgusting to be put through thiis and not believed.My email if you ever want to chat karlfriend78@gmail.com
The Post Finasteride Syndrome foundation are doing some groundbreaking research, if there’s any left over cash, they would be a worthy recipient.
http://www.pfsfoundation.org/donate/
http://www.pfsfoundation.org/news/possible-epigenetic-changes-pfs-patients-focus-new-clinical-study/
Interesting to me that in our sexually obsessed society that there is not the compassion for sufferers of this condition.
Exactly! Our culture is pretty much saturated around sex and sexuality. It’s such a bizarre thing, that this subject is foistered upon us to such an extent that it is unavoidable, but when someone brings up an unpleasant side of relating sexuality, it’s suddenly a taboo-subject. In my view, it is a total and utter hypocrisy. Victims of PSSD do not get the justice and help they deserve.
This was an iteresting update from the pfs foundation today.
Common pathways between PFS and post-SSRI sexual dysfunction could be useful in designing therapeutic strategies for both conditions, according to new University of Milano study
Sorry here is the link to the article:
https://t.co/VGGszF4Kd5?amp=1