The RxISK Prize campaign has now had over $10,000 from 51 donations coming from 48 donors in 12 different countries. People from Korea to Argentina are engaging with the issue. We will give more details later in the week. It seems clear that Adverse Events – Drug Wrecks – are a Global Disorder, the greatest single source of morbidity and mortality on the planet but few apart from those affected seem to notice.
We have already had one reply from a pharmaceutical company from letters sent out last week, which needs to be explored further.
Meanwhile a further set of letters were sent last week to
- The British Association for Sexual Health
- The International Society for Sexual Medicine
- The College of Sexual and Relationship Therapists
The responses from these groups has been immediate and positive. In terms of getting the word out it looks like a good idea to write to the equivalent organizations in Argentina, Spain, Korea, Germany, America, etc or whatever county you the reader are in. If you could establish what organizations you have who are broadly in the area of sexual therapy or relationship counselling for whom Sexual Dysfunction might be an issue, and a person to contact, we can give you a template letter to translate and send.
Since the first letter was sent, another idea has been proposed. When it comes to satisfying basic human needs as well as wondering about issues like “coming out”, people with Post-Retinoid Sexual Dysfunction (PRSD), Post-Finasteride Syndrome (PFS), and Post-SSRI Sexual Dysfunction (PSSD) are in a position that is something like a cross between the position that people with disabilities are in and people with AIDS were in in the 1980s and 1990s.
Intimate questions
This led to the following thoughts. Something like this might be included in any updated letter to any of the organizations readers track down. But it would also be great to get input from anyone reading this from any walk of life who might have had occasion to consider related issues at some point.
- When meeting a potential new partner, when and how should the issue of PSSD, PFS or PRSD be raised?
- There is a risk that a new partner could reveal details about the condition to other people, either maliciously or even just through confiding in close friends. What would you say to those concerned about this issue?
- How would you balance the risks for a younger man worried about not meeting a partner because he is losing his hair and worried about being unable to function if he takes Finasteride?
- There is often little sympathy for those with PSSD. The use of an antidepressant means those with PSSD are often dismissed as depressed or nervous. Do you have any thoughts on how a sufferer should approach this?
- There is often little sympathy for those with PFS. The use of a drug to prevent hair loss seems to trigger a moral reaction – this is what someone who is vain has to expect. Do you have any thoughts on how a sufferer should approach this?
- There is often little sympathy for those with PRSD. Roche have so aggressively dismissed all problems linked to Accutane that no one believes the patient. Do you have any thoughts on how a sufferer should approach this?
- In cases of sexual dysfunction that involve a loss of genital sensation or an inability to engage in intercourse, such as in some cases of spinal injury, typical advice often centers around exploring other forms of intimacy eg. other erogenous areas, massage, etc. However, it’s often the case with PSSD, PFS and PRSD that there is a global reduction in the ability to experience sexual sensations and pleasure. This can include muted sensation across all erogenous areas, such that being touched by a partner produces minimal or no sexual feelings. Can a sense of intimacy be created given these limitations?
- PSSD, PFS and PRSD can be difficult on the sufferer’s partner. They can feel conflicted between not wanting to end the relationship, but also finding the lack of connection impossible to deal with. Do you have any thoughts on this kind of situation?
- In the case of people with other disabilities, the need for specialized escort services, or sexual massage services, or other ways to assist intimacy is now recognized. While we hope to find a cure for these conditions, in the meantime any thoughts you have on what might be done for people with PRSD, PFS or PSSD in this respect would be greatly appreciated.
- These conditions are not talked about publicly. This adds to the sense of isolation experienced by those affected. Do you have any thoughts on how greater awareness can be brought to these issues?
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tim says
Intimate Questions.
1) “When meeting a potential new partner, when and how should the issue of PSSD, PFS or PRSD be raised”?
In the early years of the U.K. HIV/AIDS epidemic the rejection, stigma, scapegoating, victim blaming and denial – (professional and none-professional) made the sharing of positive HIV infection status a fearsome and desperately threatening undertaking.
The widespread priority amongst patients was undoubtedly the protection of future partners from avoidable infection. They wanted and needed to share, however they also needed support and facilitation in order to succeed.
Perhaps there are “protection” issues critical to sharing information about PSSD, PFS and PRSD?
Protection from rejection (both parties) in a potential relationship.
Protection from the stress, pressure and anxiety of not-yet-sharing aggravating sexual dysfunction and devastating already injured self confidence.
Protecting a potential partner from interpreting difficulty with intimacy as a marker of not being attractive enough, or from the rekindling of memories of previous rejection and/or relationship failure.
The way we were able to begin to address the clearly comparable and onerous challenge in HIV Medicine was to achieve funding and training for
HIV Counsellors.
They were able to listen to fears, encourage information sharing.
To offer insight, understanding, empathy, acceptance and compassion.
They could offer joint appointments for couples and (with careful preparation and consent) – meet both client and new partner to affirm and support at the time of information sharing.
The empowerment afforded by these superbly informed and absolutely committed counsellors clearly, protected, nurtured and saved vital relationships, from the established to the embryonic.
In terms of the prevention of onward HIV transmission, it is clearly difficult to quantify.
In terms of quality of service provision and patient/client quality of life, the positive outcomes were certainly evident.
Many who experienced the input from our specialist counsellors became passionate and successful fundraisers for expanding future service provision.
Once the denial, scapegoating, victim blaming and overall rejection experienced by those with PSSD, PFS, and PRSD is replaced with understanding, awareness and acceptance by those who – (deprived of relevant toxicity data by manufacturers and regulators) – prescribed the drugs causing this human catastrophe: –
Might there be an invaluable role for the “PSSD COUNSELLOR”?
Heather says
Tim, this is so very enlightening, and the need for specialist PSSD counsellors made very clearly. Excellent idea.
Picking up also on point No 2 on the list supplied: to find out that a new partner, probably not understanding that, in our son’s example, PRSD was causing difficulties, and sharing this information unguardedly amongst their mutual friends, was we feel a key factor in precipitating him into suicide. Also, his desperate worry that his PRSD was something inexplicable and something which did not affect others. Had the information that (Ro)Accutane can cause this, been included in the PIL, it would have at least alleviated the terror of being alone with this problem. In the PIL, and only recently added, are the words ‘loss of social pleasure’ which we assume are ROCHE’s covert way of mentioning possible PRSD?
susanne says
Tim – would the councellors need to be paid or would it be free?
Could a confidential system also be set up so that individuals could contact each other via e mail or phone at their own discretion, not so much for counselling but mutual discussion ,friendship ,support , meetups?
Dr. David Healy says
Counselors can be incredibly dangerous unless they recognize the condition being talked about. If they treat it as in the mind they could do more harm than good. Some forum is needed. One of the lessons of AIDS is that groups – activist as much as support – were very important.
Laurie Oakley has been quietly setting up something similar for people with enduring withdrawal and related problems – covering both the problems and the response of the system to Us with problems. PSSD, PFS and PRSD (to a lesser extent) have created research centered forums and PFS have been trying to extend this to a network of medics who will listen.
DH
tim says
Susanne,
In my 36 years working in this field confidentiality was as sacrosanct as accuracy of diagnosis.
We had a public health role – (epidemic control and disease prevention) – as well as providing confidential specialist diagnostic and treatment services for individual patients.
The field was initially deeply stigmatised in the 70’s but by the mid to late 90’s the stigma had greatly reduced.
We had trained Health Advisers whose role it was to talk with our patients explaining the importance and urgency for their partners to be investigated and treated (if indicated) with their knowledge, understanding and consent.
These Health Advisers therefore had to “counsel” and establish a collaborative relationship based on trust and accurate information about diagnosis/diagnoses and management.
Those appointed were usually long serving, senior specialist nurses in Genito-Urinary Medicine, Sexually Transmitted Diseases and Sexual Health.
They had additional training and qualifications specifically for their contact tracing and public health work.
Hence, where I practiced, only senior, highly trained and experience specialist staff were employed in these positions.
I envisaged the personalities, skills and attitudes of such respected people when I made the suggestion of PSSD/PFSD/PRSD “Counsellors” above.
The critical importance of highly trained, accountable, professionally qualified and registered practitioners cannot be overstated from my experience.
Their patients were so often vulnerable, devastated, frightened, shocked, inappropriately ashamed and stigmatised.
We went to great lengths to address these responses to their health adversity because our primary objective was to do (much) more good than (to risk) harm.
The risk of harm is addressed and prioritised below by
Dr. Healy.
It would have been dangerous and inappropriate, as well as a very great risk to confidentiality -(and hence trust and credibility) – to involve anyone without full knowledge, understanding and awareness; and of course the ability to “recognise the condition”.
This would equally apply to an envisaged PSSD Adviser – or (Counsellor).
With AIDS, the professional Health Advisers expanded their remit to provide “pre-test (HIV) counselling” and “post test counselling” and support.
Simultaneously their title “morphed” between Health Advisers and HIV Counsellors.
This reply is lengthy, but your question is extremely important consideration.
susanne says
The college of psychiatrists replied to my query about two weeks ago by saying they had not heard about Rxisk before receipt of my email and are not endorsing the campaign to members. I asked whether psychiatrists in Wales are interested but seemingly not being endorsed officially anyway. Seems strange they hadn’t heard of it by then when Wales is such a gossipy place. Seems strange but not altogether surprising that they cannot give some publicity at least when they cannot fail to know how much suffering adverse effects of drugs is causing. Surely the symbiotic relationship with drug companies would continue if they did get involved – their both publicity machines would be able to tackle the acknowledgement that harm is being caused – and prescriptions will still be needed. The kudos of being involved would be huge and even avoid the necessity of a massive mea culpa in the future and even the possibility of group legal actions such are taking place over the thalidomide scandal. There have been a few programmes on TV highlighting adverse effects but they never get to stage of discussing the need for cures.
Have any psychiatrists or GPs shown any interest behind the scenes? The BMA is investigating the problem of psychosomatic diagnoses being applied to unexplained or misunderstood symptoms which would include adverse events – but it seems more in order to generate better practice around consultations and prescribing .It is still not talking about the need to research for cures. Which would lead to better medications when needed. GPs will lose the trust of people if they don’t engage with the publicity that is spreading about anti depressant prescribing They have a duty to learn about the potential effects of drugs – the information given about the harms caused by street drugs by treatment centres is more transparent – it is bizarre that medics take less care with legal drugs.
Dr. David Healy says
Suzanne
Thanks for getting in touch with the College. RxISK has formally written also. If we don’t get a response it would be great to use whatever they have said to you in terms of not endorsing. Do you have an email that you can send or can you be reasonably confident of the words used.
Watch out for some posts later in the month on some of these issues
David
susanne says
David – so sorry but when I get negative replies I delete them – the wording used was definitely that the college had not heard of Rxisk before receiving my mail. I e mailed as a member of the public ie to make it obvious I am not a psychiatrist. The wording from the college info officer was careful – as they had not heard of it they were not endorsing it (not endorsing used twice and were not endorsing it to members. They were not specifically saying they would not get involved but no mention that they might take an interest. They answered very quickly so I hope they will reply to you as quickly. I will trawl through again to see if there is way of retrieving the e mails.
Just by the way also ee mailed Sarah W Chair of Health cttee – standard letter in response saying she no longer gets involved with campaigns due to pressure of work but some make it into her newsletter. Don’t know if RxISK will make it. Again seems strange that the Chair of a cttee can alone decide if an issue is discussed by the cttee as a whole. Hardly democratic and can keep things under wraps without the cttee knowing. MPs will not meet with people outside their area or reply to mailing – so – does anybody live in the Devon area ?
mary H. says
I find it quite amusing how little those that SHOULD be in the know seem TO know of what goes on. In fact, I’m not sure that I believe it half the time.
If you were a psychiatrist – or studying to become one – wouldn’t you want to be up-to-date with the latest ideas floating around regarding treatments which are/ will be your responsibility to use with patients?
Whether you believe in David Healy wouldn’t you, at least, want to know what he’s up to?
Living in North Wales, I am astounded at the unwillingness of so many to even admit to knowing of the existence of David, let alone be willing to discuss his work. I put this down to one of two things:- jealousy or fear ( of the reality of their secrets becoming common knowledge). Whichever way you look at it, it is obvious that the more we shout from the rooftops, the sooner will the walls, behind which critics hide, begin to crumble.
It is due to this unwillingness in N Wales that my heart almost bursts with pride as I look at the Rxisk Prize donations graph. Great shame that this graph hasn’t made its way to the press around here in my opinion.
Today would have been a good day for it to appear actually – following last night’s disappointing result ( for us Welshies) on the football field, many would welcome good news!
Spruce says
I would really like to see a helpline set up at some point to help people with PSSD, or a charity that people with PSSD can call, to get advice and support.
Apart from Rxisk and one GP, there has been no acknowledgement to me that PSSD exists, and for many years i had to keep the angst and distress this condition caused me to myself.
This was very difficult for me to deal with mentally, and in the early years of developing PSSD, when i had less acceptance of the condition, the distress i felt often led me to self harm.
I tried desperately for years to get support and understanding from doctors about PSSD, but it always ended badly, and i usually felt a lot worse after being told by doctors the condition didn’t exist or i was generally disbelieved etc.
The one GP i met who knew about PSSD, became very defensive, very quickly, when i started asking more questions about it. The minority of doctors who do know about PSSD, seem very nervous to talk about it from my experience.
As i have stated before the isolation you can feel having PSSD can be overwhelming. You can’t talk to your family, friends, romantic partner, or doctor about it without fear of ridicule, being shamed, or being disbelieved about it.
I even had one female GP get angry with me, and tell me never to mention the condition to another doctor ever again. She also told me she couldn’t understand why i mentioned my ongoing sexual problems to my mother, as she felt it would be something most men would feel too embarassed to talk about with their mother. The whole tone was that she felt the sexual problems was something i shouldn’t talk about out of shame, and almost like it was my fault in some way.
I really hated that doctor.
When i reported my PSSD to the MHRA, the guy i reported it to, was sniggering down the phone with his colleague about the sexual problems. I swear on my life this is true.
I had another doctor quickly round on me once when i tried explaining my sexual problems hadn’t resolved after stopping citalopram with him saying ” your sex drive will get better when you decide it will get better”.
The one GP who knew about PSSD, as he told me in the first consultation i had with him, that he was an ex psychiatrist who had a few patients who had developed persisting sexual problems after stopping SSRI’s, that he was sure was caused by SSRI’s, used to hate it when i brought the subject up.
He would do anything to try and avoid the subject, often changing the conversation, reminding me we only had 10 minutes and trying to bring the consultation to an early end, and once when i tried to bring the PSSD up, he said, “lets talk about where you are getting the benzodiazepines from”, and started asking questions regarding how he thought i was getting benzodiazepines off the street, and subtly suggesting i was abusing benzodiazepines. I swear on my life i wasn’t.
Sometimes this GP would look so uncomfortable talking about PSSD, he would actually move uncomfortably in his chair. It reminded me of a worm squirming on a hook.
Once i went in to this GP with the MHRA’s response to my yellow card report, which stated that they were closely looking at sexual dysfunction that persists after stopping SSRI’s. I handed the letter to him. He took it off me, glanced at it for literally a second, not reading anything, and handed it straight back to me and started trying to change the subject.
This GP also refused to talk to my psychiatrist about PSSD, even though i told him my psychiatrist didnt believe me about PSSD, and that by him telling him of his experience of PSSD, i would be more likely to be believed.
My advocate also wrote to him asking him to speak to Dr Healy about PSSD, but he wrote back politely refusing.
Even in the rare instance you find a doctor who knows about PSSD, it can be almost impossible to get them to talk about PSSD in any official capacity, or talk to other doctors about it.
I could talk all day about some of the nasty responses i have had off doctors when i have tried to get help for my PSSD over the last 10 years. There has been so many.
without coupled with the shame and stigma of having sexual problems, i think this is part of the reason some people with PSSD choose to take their own lives.
susanne says
Spruce – the way you are being treated is cruel not just distressing – just by the way though are your consultations being recorded correctly – have you had access to your medical files to see whether what you say is being recorded accurately? If you are barred using the cop out of access would cause you or others ‘distress’ it is still important to document what t akes place . I am wary of help lines – they so quickly become organised into projects which seek funding and control ,get removed from those who set them up with specific aims as money compromises independence too often, power games develop in groups. The same old bouncing around from one to another can add to the frustration to say the least – there must be a way of setting up confidential access to others – eg if buying something on Gumtree or Pre loved web site the initial contact can be by e mail only then by phone if the parties wish initially at the sellers discretion.
Spruce says
I don’t know what can be done Susanne.
It is a very lonely and difficult road for someone left with PSSD.
What upset me the most in all this was the way Avon Wiltshire Partnership reacted to the complaint I made about the treatment I had experienced from one of their psychiatrists. I had good reason to complain, and did so in a calm and collected manner, providing evidence in some aspects of the complaint which proved the psychiatrist had made a mistake prescribed two drugs which were contraindicated, and that he had withdrawn me much too quickly off benzodiazepines. I also complained about the PSSD I had been left with.
What really came as a surprise to me was the great lengths AWP went to make out anything and everything else apart from citalopram could be responsible for my sexual dysfunction. They also put a lot of time and energy into making me out to be the problem, including trying to paint me as an out of control drug addict who was abusing his medication (I wasn’t), and they also tried to paint me as violent ( I wasn’t).
They also used tactics in their complaint response like repeatedly avoiding my questions about PSSD, answering my questions about PSSD with answers not even relevant to PSSD, huge delays in their response ( I reckon they were hoping I would give up), lying (often blatantly) about claims to things they had done (two things I was able to prove they were lying about, but the ombudsman said that even if they had been lying, it was unlikely to change their overall decision).
There was so many other nasty little things AWP did to make me go away, or to let me know the only person at fault was me. I have gone into some of them in other comments.
One particularly nasty one was that after my suicide attempt ( which was more a cry for help out of desperation) the police phoned the crisis team. The woman there told the police that she didn’t want to speak to me. The police then insisted she speak to me. She was very cold and unfriendly towards me and told me bluntly “there is nothing I can do to help”. I then started explaining my distress that I had been left with sexual problems that hadn’t gone away years after stopping citalopram, and that the psychiatrist I had complained about, refused to take me seriously that the medication had caused it.
It became obvious she was aware of my complaint, and she started defending the psychiatrist, and telling me that if I really wanted to have killed myself then I would have done ( I swear she actually said this). She then started saying that there was no way the medication could have caused my sexual problems as it had been out of my system for a long time.
I then started explaining that there was evidence that the sexual problems can persist after stopping citalopram. When I said this she became very defensive and bluntly said she refused to talk about my complaint. She then bluntly brought our conversation to an end, by insisted on speaking to my mother.
She then told my mother that I was causing my mother unnecessary distress, and asked my mother if I was violent (I have no history of violence to others). She then told my mother that if I was violent that it would be best to have me arrested and banned from her house. She then told my mum she had to go, and put the phone down.
This was all hours after making an attempt at suicide, after years of frustration about not being believed by doctors. I would say that incident with the woman on the crisis team, was the worst way I have been treated by a human being in my life. What a disgusting way to treat someone who is suicidal and has just tried to take their own life.
Also I had to deal with the complaint, all the while going through benzodiazepine withdrawal, and this made everything much harder to deal with. At times I was so sick going through the withdrawal I had to ask the ombudsman if I could have a bit of extra time before submitting my reasons for a review after they had completely come down in favour of AWP ( they do in 96% of cases no matter what evidence is provided to them) in their conclusion to my initial complaint. They said this was ok.
Then when I submitted my review, they said they weren’t going to do a review with the main reason being because of my time delay, which they had already said was ok! I couldn’t believe it.
Also they had completely wavered and accepted all of AWP’s time delays. What a double standard!
Also it was ironic that the reason I was stopped from having a review was because I had to ask for more time because of the withdrawal problems I was having, which was one of the main components of my complaint. Talk about adding insult to injury.
The patients association now advises people not to go to the health ombudsman on account of how biased they are towards the NHS, and that statistically you are very unlikely to receive any kind of justice, no matter what evidence you provide to them.
They have even had reports of patients being told “go to the ombudsman” by health trusts in a jeering tone, as the health trusts know how unlikely it is for the ombudsman to do anything about any bad practice or bad behaviour, even when there is strong evidence to support the patient complaining is right.
The crux of this comment is that getting PSSD can be just the start of a very long road of suffering that often ends up being more about how you get treated by doctors and health agencies, and their supposed regulators like the MHRA and the health ombudsman. In a lot of ways they way I was treated after getting PSSD was actually worse than the PSSD itself.
I feel I was failed and betrayed by almost everyone. GP’s, Psychiatrists, Psychologists, AWP, the PHSO (health ombudsman), MHRA, and the drug companies. The only people that have stood by me through all of this has been my mother, and my Mind advocate. Even most of my own family think withdrawal cant last years, and that the doctors must be right, and I must be wrong. So it has even caused conflict within my family.
The whole process of suffering PSSD for nearly ten years, going through benzodiazepine withdrawal (which also lasted years), going through the complaints process which took years and came to absolutely nothing, and all the nastiness I got from almost everyone involved, was the most brutalising, barbaric, hopeless, and distressing experience of my life!
susanne says
It is a massive amount of hurt to deal with Spruce – thank goodness you have what sounds like a lovely mother.it’s good to have an advocate but even they will be undermined by the weight of collaboration between those in the AWP circle – once they start lying and closing up it is enormously difficult to get a breakthrough as you are pointing out. I’m glad you have an advocate but that can be used to looks good – if an advocate has been provided (not to undermine yours at all) they rarely have much power. You obviously realise that The people who act in the way you describe know very well that the manner in which they communicate will wind people up so that accusations of ‘trouble making’ unreasonableness can be used to undermine complaints (which hasn’t worked in your case). One ombudsman told a complainant once in writing to’ go discuss it with the Quakers as they are good at this kind of thing’ – Ombudsmen are not always trained to do the job, they may have unconscious or conscious biases against people with mental heath problems. A young man who had tried to commit suicide was taken to hospital, admitted to a room labelled ‘poisons unit’ and his friend told ‘we don’t make them too comfortable here as they will only want to come back again’ said so he could hear. Just saying this Spruce to confirm that your description of brutality is shared and believed by many others – but that knowledge alone doesn’t help much. Do you think a community of people with shared experience getting in touch in ways other than but also including blogging would help? Activists such as yourself ,by writing about your experience, can become more empowered by sharing ideas about tackling the stigma used to undermine legitimate complaints and other ‘issues’. Just a thought Spruce -I just keep wondering how medics can claim there is no drug in the system if no test is carried out? And wonder if MIND in your area is supporting the RxISK campaign? They could give it a lot of publicity. I realise all this doesn’t really help but wishing you all the best for now anyway. susanne
Johanna says
Suzanne, Spruce — Approaching MIND might be a good idea! Maybe at the national level — or maybe wherever you have connections to good people who aren’t afraid to take this on.
A few months ago they released a report on a research survey they sponsored:
https://mind.org.uk/news-campaigns/news/better-support-needed-for-people-on-antidepressants-says-mind/
“The research, based on a survey of over 1,000 people taking antidepressants, reveals that almost two-thirds (60 per cent) of people taking antidepressants feel the medication affects at least one of five key areas of their lives: their sex life; work or study; social life; close relationships; and independence.”
“Less than half (48 per cent) of respondents felt they had been given enough information about side effects of their medication by the health professional prescribing it to them.”
If nothing else, they might be willing to help get the word out …
susanne says
Thing is Joanna there is nothing new in the survey -yet another survey. It maybe helpful to have more data but it can too often end there and looks good to ‘doing something’. It is always worth trying but MIND and other organisations do already know something needs to be done about helping people who are suffering adverse effects.- and with a network across the UK it is not feasible they have not heard of the campaign! It is still worth anybody who has contact with MIND trying to putting some publicity out there though – sometimes it just depends on the right person in an organisation being in a position where they will risk annoying funders/health workers/ ‘partners’ etc but in any case it shouldn’t stop any body who uses a MIND centre or drop ins run by other organisations from publicising it. If any of the mental health orgs are already helping eg Sane – they seem to be keeping quiet about it,
Sally Macgregor says
MIND should be a great organisation to contact – it’s the best we have (I’d steer clear of Sane). But it does sit permanently on the fence around meds: I wrote to point out that their info on the side effects of so-called less damaging 2nd gen anti-psychotics was misleading. That was a couple of years back – I got a really mealy mouthed response. It’s a terrible disappointment to me that MIND isn’t more punchy. However, if enough of us in the UK wrote, maybe we might have some small impact on getting them interested?
Dr. David Healy says
Sally
Have written to them. MIND were one of the first to raise the possibility sexual dysfunction might endure
D
Heather R says
Sally, we totally agree. We went to MIND in Herefordshire over a year ago to tell them about our son’s suicide after RoAccutane-isotretinoin and the later addition of Seroxat/paroxetine. We stressed the PRSD element of possible long term damage from this drug. We asked that they please kindly alert other branches. Their response was that they couldn’t as each branch is separate and runs things its own way.
We were particularly concerned with Herefordshire MIND as we’d first gone to them to ask them to raise our concerns about the acne drug and Seroxat in 2002 as we felt sure the combination of the two was making our son seem almost psychotic in hospital and his psychiatrist refused to talk to us about it, was in total denial. Because we tried to see him about this, he banned us from visiting our son who was his voluntary patient, suicidal, in hospital in Hereford. We hoped MIND could suggest how we could open a dialogue with him. Their response was to tell me off for being ‘an over protective mother, who was afraid of angry men (presumably they meant the psychiatrist) and who would benefit myself from counselling’ (!) and their in house psychotherapist, who had spoken to me so unhelpful lay even had a counseller’s little card ready to hand me! I did take it but went later to counselling with someone in my GP practice (just in case) and he said MiND had behaved appallingly.
The most important thing was, they did not offer any ideas about getting our concern across to the psychiatrist for our son, so the medications continued, he became worse and worse until he was able by his own efforts, aided by us, to move to another county and another more reasonable psychiatrist, but still the RoAccutane + SSRI connexion was not understood. These days, many doctors DO realise that the two drugs should never be given together or a mini psychosis can result.
Our recent talk (admittedly a year ago) with even the head of MIND in London did not generate action to raise alarm; we just received, as Sally describes, a very mild response and we were totally amazed. It is sad when one assumes there is an organisation with clout to help those suffering mental disorders but finds, in their moments of need, that it is not able to be very proactive. One suspects it would like to be but Govt funding ties it’s hands. It’s good to know from DH here that they did raise alarm first about PRSD, it would be interesting to know, did this information come from a London press release, and when? Let’s hope it filtered down to all local independant branches.
Daryl says
I wrote an article on medium.com please click like!
t is called ‘The day the doctor stole my sex life’.
https://medium.com/@darylbrownm/the-day-the-doctor-stole-my-sex-life-da789bd6fced
Medium.com is a very popular article platform. Please click clap / like (or share it or follow me or comment or whatever) to help the article actually get seen.
feedback welcome. Thanks
I also have uploaded some new transcripted interviews to my blog ‘sterilising the mentally ill’
Daryl says
There is another article on medium I read… I don’t think he/she has heard of the term PSSD before or knows he ‘has it’.
https://medium.com/@randomuser1234/going-off-antidepressants-killed-my-sex-life-9222666b6193
Heather says
Spruce, I’m sorry to say it seems standard practice to say to a desperate person whose suicide attempt has failed, ” if you’d really wanted to do it, you’d have succeeded” or words to that effect. Our son tried to drown himself in a local river and cut his arm open first. ( had never self harmed in his life but at this time akathisic, as we now know, from being aggressively told to stop venlafaxine from immediate effect (no tailing) as ‘he was not depressed.’ No, he was suffering brain damage from RoAccutane-isotretinoin Mr Psychiatrist, but you wouldn’t listen when we tried to speak to you in front of your Team. And your response was to stand up, snap shut your diary/ book, shout at us and our son, and stomp out of the flat, followed meekly by The Team, who later, when asked to comment, either forgot all about it, averted their eyes thinking ” if I rock the boat it will go worse for me”.
But this doesn’t help anyone. We can but try, eh.
Heather says
Your article is excellent Darryl, but I am so sorry that you’ been stuck with PSSD, and that you were given this stuff from when so very young.
A word about Omdusmen and Ombudswomen. Sorry Spruce but despite meaning well, they don’t seem interested in controversy or truly stopping injustice, even remotely, unti you set it out in the Press, and even then they seem to want to take the easy way out. I trust this is not being indiscreet, but we had a shock about a financial Ombudsman some 2 or 3 years ago. At a dinner with many of my old classmates from school and a smattering of their bored husbands, my husband attempted to open a conversation with a chap on his right. Turns out, he was an actuary working for the Govt under Gordon Brown. Trying to think of some financial small talk my husband raised the subject of Equitable Life, in which many thousands of older folk, like us, had lost their savings for retirement. They’d waited and lobbied Govt for 8 years in hope of reclaiming something, and finally, after all those years, the Ombudswoman came up with a small percentage offer of compensation. But suddenly again, for no apparent reason, just when we’d all got our hopes up, this was reversed. BUT, all finally became clear at the dinner. The actuary, (married to one of the ‘girls’ from my class), proudly trumpeted that the Ombudsman was ‘a very stupid woman’ so he had over ruled her decision, to the delight of Gordon Brown, and the pay out wasn’t made after all. He was very pleased with himself for doing this, for saving the Govt all that money. He didn’t realise we had had our savings in Equitable Life, or he surely would have been afraid of getting lynched by revealing his part in our loss. I thought my husband would explode. But this just goes to show that Ombudsmen/women are a toothlessly nice idea and nothing more. It’s the court of public opinion, Spruce, which really counts, I’m sorry to say. And the gathering together of determined ‘like minds’ that fight for justice. And justice will come, never doubt it, if we keep the pressure up. Even if it takes a long long time.
Spruce says
Thanks Susanne and Heather for your support.
If you look back at recent history you will often see that big organisations who have caused damage to people will often go to great lengths to blame the victims therefore exonerating themselves of responsibility, while further adding to the suffering of the people they have damaged.
One well known example
is the way the police lied and covered up about what actually happened at the hillsbourough disaster in 1989, which left 96 people dead, and 766 injured.
The police wrongly blamed the behaviour of the fans for the tragedy, and labelled them as drunken out of control louts etc in the Sun newspaper. Even falsely claiming drunken fans were caught robbing dead bodies.
In the last few years it was discovered that the police had lied and covered up for many years about their mistakes in organising the event, which had actually been the real reason the tragedy had occured.
A quote from the inquest reads – Police were told to put the blame for Hillsborough on “drunken, ticketless, Liverpool supporters”.
It took about 30 years for the truth about what really happened to come out. Before the truth eventually came out between 2014- 2016 there had been failed attempts at asking for a new enquiry, and a failed private prosecution by the families. The families didn’t let this stop them, and persisted, eventually getting the truth and exoneration they deserved.
Another example is how the catholic church often blames the victims of child sexual abuse, for the sexual abuse they suffered.
The Catholic church has maintained for years that because a lot of children weren’t forced into a sexual act, but went along with it, that it therefore was their own fault.
One report into child sexual abuse by priests reported that even people within the government compensation scheme set up to help people who had been abused, took the view that a lot of children were at fault because they had “consented” to the abuse.
I see a similar paralel happening when people damaged by prescription drugs try to report or draw attention to the damage they have been caused.
It often ends up that “other factors” are blamed, such as their mental illness, or the patients behaviour etc, and the patient becomes the problem, and not the drug that has caused the damage.
Spruce says
It took 27 years, not 30, before the truth came out about what happened at the hillsborough tragedy. From 1989- 2016 (when the recent report came out).
mary H. says
I fear that ‘putting the blame elsewhere’ has been the order of the day throughout history – much to mankind’s shame. Where we, in our modern day, are luckier than previous generations is with the advance of technology. Much can be said against the internet, as we all would agree, but it does have its advantages – one being the spreading of news, both good and bad, across the world within seconds. No longer will the wrongdoings of one corner of Wales remain within the confines of the gossip of locals and disappear when their attention is attracted by another juicy story – oh no, the whole world will know through newspapers, forums etc. Stories no longer rely on our memories as the ‘memory’ of the internet is everlasting. Therefore, Spruce, every thing that you and the rest of us share here will, one day, gather together and provide the necessary evidence to pinpoint the perpetrators of our ills. Let’s also remember that even death cannot hide their crimes any longer – although many instances remained unpunished in life due only to the very idea that ‘keeping quiet’ was seen as the correct way forward in many areas of High Society.
susanne says
What about collating all the accounts of personal experience and publishing a book – could it be done on line – I think self publishing the net if possible now Those amongst us who understand how to use the net would know how maybe.
Spruce says
Daryl i too have had a string of women who hate me because i couldn’t satisfy them sexually because of my PSSD.
I even had one woman call my sexual performance, “the worst sex she has ever had”, because i couldn’t get into the sex at all, because my sex drive was so dead.
I had one woman so into me that she said she definitely wanted a relationship with me after our first date. After not being able to get an erection she never spoke to me again and didn’t return my text messages or calls.
I walked past her work place about a month later, and a couple of guys there who knew she had previously liked me started sniggering amongst themselves when they saw me across the street.
There was one girl when i was 25 who i knew really fancied me, and she tried for months to get me to sleep with her. I was so sexually dead, and had zero libido, that i just ignored her advances. She got so pissed off with it that she ended up spreading around to a lot of people i knew that she was convinced i was gay.
I have had two times over the last 10 years where there have been girls i genuinally liked, who i knew were interested in me, but i knew it was unlikely i was going to be able to perform, or be able to get into the sex, so i avoided making a move, and they ended up having sex with other people. If it hadn’t been because of the PSSD i would have made a move. This still hurts to this day, years later.
I have many deep sexual regrets which really wouldn’t have happened if it hadn’t been for the PSSD.
Since getting off benzodiazepines, my ability to (mostly) maintain an erection has thankfully slowly returned (this was the only part of my sexual functioning only partly affected by PSSD, and often i was able to get an erection at times with the PSSD).
It was only when i swapped from lorazepam to diazepam to do my benzodiazepine taper, that i had serious erection problems. For some reason the lorazepam seemed to have no affect on me sexually, but the diazepam did seem to make the erection problem worse.
I took lorazepam for a year before i ever took an SSRI and developed PSSD, and the lorazepam had no affect on my libido, sensitivity, or ability to get an erection whatsoever. I was masterbating regularly during this year, and would have noticed if it had. The sexual problems only started when i took citalopram.
I felt the diazepam did affect my ability to get an erection though, but the numb genitals and zero sex drive definitely came from the citalopram.
Also i do feel the PSSD did affect my ability to get an erection, as the zero libido made it take longer to get an erection and more difficult to keep it.
Unfortunately my libido is still dead, and there is still no sensitivity in my genitals, and they still feel numb. Having PSSD really isn’t conductive to having anything close to a normal sex life.
I dont mean to sound big headed, but i was a good looking young man, and there were a lot of young attractive women who were interested in me.
Now i am slowly starting to get older, and i am noticing the better looking women are less interested than say 5 years ago. I often think that even if i recover i will never recover from the regret of what i have missed out on sexually.
This thought goes through my mind everyday. In some ways even if i recover it feels like it is already too late, and everything will be second or third best of what i could have had.
I often feel that the best years have come and gone, and that the prime of my life has been stolen by PSSD.
Looking back over my 20’s it is filled with sexual disaster after sexual disaster all because of PSSD.
Even the times when i got an erection and was able to have sex, it was almost entirely pleasureless because of the numb genitals and the non existant libido, and inability to fantasise. Also there is almost no pleasure on orgasm. Also there was no emotional connection to the woman at all.
I wouldn’t have the guts to admit to all of these sexual disasters if it wasn’t for the fact that i go under a pseudoname.
The torture continues.
Pit says
Another forum about PFS, PSSD, PRSD
http://www.hackstasis.com
Dr. David Healy says
Pit
It would be great if you and others could help us list all the forums there are and when they got established first. We need a good timeline for this plague and people’s responses to it
D
Spruce says
The PSSD has also caused some issues within my family.
One of my aunts keeps asking about when i am going to get a girlfriend, and she has remarked about how i haven’t had many girlfriends, and how all of my cousins have etc.
All of my cousins and my sister either have partners, wives/ husbands, and most of them have had children. I am literally the only person out of my siblings/ cousins, not to have a partner, wife/ husband, or to have had children.
The reason this is, is 100% because of PSSD. I know my life would be in a completely different (better) place had it not been for me developing PSSD.
In a lot of ways i feel like a 22 year old man stuck in a 32 year olds body. I feel the sexual part of my brain definitely stopped developing when i developed PSSD at 22. It is like i stayed still while the rest of my peers went on developing.
I am certainly not in the kind of life position that most 32 year olds are at. I completely put this down to psychiatric drugs.
Apart from a few non serious girlfriends in my early 20’s, i have never had a serious relationship. I completely attribute this to the PSSD. If i had a normal sex drive, i would have ended up in a serious relationship years ago. I know i would have.
To never have had a serious relationship at 32, feels kind of pathetic.
The sad thing is i cant see it changing in the near future. I cant fake sexual desire for a woman, and my previous relationships have all fizzled out after a few months because of this.
Sometimes i feel a bit like that guy in the film “the 40 year old virgin”, just without technically being a virgin.
Do i tell my aunt about the PSSD and risk being disbelieved or ridiculed, or have people wonder if i am gay, or if there is some other reason i dont have a girlfriend.
Either option is undersirable.
It is like being between a rock and a hard place.
Such is life with PSSD.
SHANE says
I’m selling a signed book by David Healy on ebay which all the processed will go to the prize fund.
http://www.ebay.co.uk/itm/signed-book-by-DAVID-HEALY-THE-ANTI-DEPRESSANT-ERA-/182827559849?hash=item2a915f2ba9:g:lzcAAOSw86JZ4Ja7
susanne says
The National Survivors and Users Network have published information from the blog on RxISK and the Prize (sept 13th) in their newsletter -Thanks very much to them, They are requesting more bloggers to contribute to their site where adverse effects of anti depressant drugs features highly. But very little mention, if any, gets made by contributors about the need for a cure. NSUN has a huge network – they hold conferences and talks – it may be that some of Rxisk contributors would be able to attend as speakers to highlight the need for a cure?, the potential dangers and ways of withdrawing from drugs seems to be where the emphasis is lying – maybe drug companies and the colleges are avoiding the topic of needing to find a cure – a step too far…it is not publicised as much. If anybody has the confidence to speak in public it is people who live in ‘deprived areas’ who are mainly but not only being prescribed anti depressants . I think meetings in community settings . or any places where permissions and bureaucracy could be avoided would be a way of alerting people who don’t access websites on mental health – so creating activists who will never have voices heard at the BMA or college of psychs and GPs individually but collectively could make a difference . I am sorry to be making a suggestion ie speaking at meetings ,which I am not in a position to carry out myself but I do think spreading the word needs to be done in local areas and other than on line.
Dr. David Healy says
S
This is good news to hear – if you or anyone has a contact there will write and thank them for this
D
Sally Macgregor says
‘Relate’ – the old government Marriage Guidance Bureau – which provides relationship counselling has a fairly good track record. It certainly trains counsellors thoroughly and seems to avoid some of the problems prevalent in ‘couples counselling’ by private practitioners. If there’s a template letter suitable, I have a contact there – but she’s a small fish in a big pond. However, strikes me it might be worth contacting them at a higher organisational level? They see many, many sexual problems which cause dreadful tensions in relationships. Again, I’m happy to make the contact but would appreciate some advice around – how much information, the best tone to adopt, who is it best coming from?
Dr. David Healy says
S
Again have written. I head to the CEO level usually but it might well be worth contacting people within the organization who might be motivated – motivation can be worth more than both expertise and seniority – so very happy to pass along templates if you still want
D
Heather says
Similarly to Sally’s comment, have you approached CEO of the Samaritans? We are awaiting a date for a meeting with them in order to give a talk to their training arm about RoAccutane-isotretinoin related suicides, and of course PRSD etc is one thing that drives people to suicidal desperation. In the past we’ve tried to alert their Head Office about the drug but even so, found disappointingly that it wasn’t shared to their local branches.
Delta says
Years ago I bought a 2002 David Healy’s book called “Psychiatric Drugs Explained” 3rd Edition.
Two quotes from it:
Page 33:
“As the antipsychotics produce a state of indifference, a potential problem of long term use or too high a dose is that the user may become apathetic, listless and indifferent to everything.”
…
“It is known that people who take antipsychotics continuously are significantly less likely to relapse and to have to be readmitted to hospital. However, studies have suggested that they may be also less likely to get married or involved in significant relationships, to find themselves jobs, or to get on with their lives compared with individuals who have the same ilness but who do not take continuous antipsychotics (e.g. Johnstone et al 1988).
Another finding is that ALL emotions may be blunted, rather than just certain emotions that have been troubling. MANY takers complain that ALL feelings from joy to anger are dulled. Not all people have this side effect. Broadly speaking, it depends on the dose being taken, although some people will be clearly affected at very modest doses.
As this is a psychological rather than a physical side effect of antipsychotics, IT IS IN MANY
WAYS FAR MORE IMPORTANT THAN THE OTHER SIDE EFFECTS MENTIONED. It can be pernicious in that the person may become indifferent to be indifferent. It is also important because there are few antidotes for it – other than halting the drugs or psychostimulants.
It may, in addiction, be very difficult to distinguish drug-induced demotivation from a schizophrenic or depressive demotivation, or life itself. Trying to tease out what is happening may require great skill and cooperation between the taker of the drug and the prescriber. All too often , the appearance of apathy and listlessness results in individuals, who are taking antipsychotics, also being prescribed an antidepressant- inappropriately. Antidepressants donot help this condition.
One of the things most commonly mentioned by people on stopping long term antipsychotics is a return of interest in things, along with finding that they have more “get up and go” and that everything is not impossibly difficult to undertake any more. This can lead to problems if an unwary individual throws themselves into things too much and becomes stressed or overloaded as a consequence. It can also be somewhat frightening as feelings such as anger, temper outbursts or a more vivid appreciation of the sexuality of others may re-emerge in all their potential awkwardness.”
Page 73
“Essentially, antidepressants – and in particular the SSRI’s – can cause all the problems that the antipsychotics cause, from dyskinesias, to dystonias, to akathisia and parkinsonian features.”
Now my comment:
Psychiatrists are recomending SSRI’s to an increasing number of people, destroying their emotional configuration in the process. I’m pretty sure that those who get iatrogenic sexual dysfunction from these drugs, also get emotionally blunted. This is what someone in this blog called “being buried alive”. You lose you sex drive and you lose the emotional response that gives you the ability to experience pleasure: No more dreaming or fantasy, no more emotion at your favorite sport, movies or musics…or women…
Many people are killing themselves because of this and families are being destroyed …