The Pills That Steal Sex

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March 23, 2017 | 47 Comments

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  1. I relate to the feelings in the suicide note. (NOT SI myself). But the feelings of being alone and not understood. It’s so torturously painful. And the grief of all that is lost. How does one ever feel connected to people again? I feel like I am in a different world than everyone else. If someone knows how to connect again, please share.

  2. A brilliantly written and extremely important account. The most shocking part for me was the attitude of the US doctors who said no one would take SSRIs if their clinicians admitted that sexual dysfunction, occasionally permanent, could result. These people are taking on the mantle of gods, assuming that they can remove the joy in patients’ lives without any blame, after prescribing drugs which are mostly unnecessary in any case. Thank you Katinka for your continued excellent investigations and for setting alarms ringing.

  3. Katie B-T I am so sorry about your feelings of disconnection and grief of the lost ability to feel joy in life. What you have written is exactly what our son Olly often said. He kept going day-to-day by constantly trying to find new projects to keep his interest, completing them, buoyed up a little with success, trying to generate the old feelings of normality and belonging again. Sometimes, he said, love of family and friends could overcome the ‘white noise’ in his head, but I know he felt no one understood. And he was right, they didn’t. I know they still don’t, and even though the last 4 years have been full of research and enlightenment for us, we will never be able to convince friends and family members of the truth, so in some ways we will always be disconnected too. But like it says in the suicide note written by the 26 year old man in Katinka’s post (which is very similar to the one Olly left), it is the drugs that are to blame, ‘these drugs are the problem. End of story’. Not much help to you Katie B-T of course, but the results of Olly’s creativity are with us still, and it was making himself keep producing these which gave him moments of distraction into happiness and absorption whilst he battled on. Love meant everything to him. He was surrounded with it by us, and his young girlfriend and her kind family. But sadly it wasn’t enough, when contradicted by more damage from medications and damning words from a terribly arrogant psychiatrist which convinced Olly he was an attention-seeking burden. He left this earth because he felt, at the last, that he didn’t deserve love, because he ‘had brought this situation on himself’ (in the words of the aforementioned psychiatrist) and he wanted to make amends by freeing us from having to worry about, or care for such a loser, any more. NEVET, EVER, let this happen to you. Hold on, persevere, do anything that gives you the slightest hint of joy, and keep building hope in your mind, until connectedness returns. No one should give Big Pharma the power to kill them, but to keep going, they need the surrounding love of family and friends, they are SO deserving of that love, not least because of their amazing courage dealing with a torture that has been inflicted on them simply because they trusted clinicians conned by pharmaceutical companies, for financial profit. Isn’t this situation just another form of subtle terrorism?

  4. Dear Heather–

    Thank you SO much for your words of understanding and hope. I am so very sorry for your loss. I read your the 2 posts on this site that you and your husband wrote about Olly. It’s so painful that you and your husband kept bringing up over and over again how the acne medicine and psych drugs were the cause and no one listened. I can’t image the feelings of helplessness you had as you watched Olly deteriorate. And the power/control dynamics with the psychiatry establishment is also a strong theme in Olly’s story. It’s amazing that Olly was able to work on so many projects while he was suffering so much.

    What I want most is to feel connected to people again. I want to be believed and understood. It’s a long story but I suffered nerve damage trying to get off an SSRI and from trying to get off gabapentin that I was on to try to mute the SEVERE akathesia I had for over 9 months from SSRI withdrawal. I now have nerve damage that affects my bladder, pelvis, butt, hands, feet, face, lip, eye, autonomic nerves, and olfactory nerves. I can stand less than 10 mins with pain. It hurts to sit too though I can sit for longer. I have urinary frequency in addition to bladder and pelvic pain. I have to eat a special diet for my bladder. I get sick from exercising–from the autonomic nerve damage. And there is very little I can do anyway even though I have really tried due to the nerve damage. Sex is painful and the pain lasts for days later. I think the drugs have affected desire and attraction. I never knew what a normal sex life was like because I was 12 when I started an antidepressant. I am on more drugs now than when I started the taper. I’m stuck with what I have. I don’t want to risk more nerve damage or akathesia or SI. I’m 36. This all started 4 years ago when I was 32.

    This has been traumatic enough. But then to not be believed, to have no where to go to turn for help, and to be on guard to protect myself from more damage has been another layer of trauma. I tell my story to people. No one changes how they think about doctors and medicines. About what drugs they take. About their prescribing practices or how they train residents.

  5. I have had PSSD for over 8 years. I have tried to kill myself once already because of this condition. The doctors don’t believe me, and say it cant be the drugs they prescribed. I have tried to convince my ex psychiatrist for 8 years that this condition is real, but he refuses to believe the drugs he prescribed could have caused this to me. He is also very arrogant and thinks he knows everything, like the previous poster mentioned. I had a normal healthy libido and everything worked normally sexually until i took citalopram at 22. Ever since taking citalopram i have had zero libido, almost pleasureless orgasms, and my penis feels numb. My long lasting sexual problems were very obviously caused by taking citalopram, as they started the day i took the drug, and have all the hallmark features of sexual side effects caused by SSRI’s. I can promise you this condition is very real and is a lot more horrible than people realise. It also affects your life in lots of different ways which people wouldn’t initially think it would,but i wont go into all that here. It particularly affects your ability to have a normal loving and sexual relationship with the opposite sex. I haven’t felt like a normal human being since developing this condition at 22.

  6. Imagine if the universe was full of clinicians like, Dr Chris Van Tulleken.
    I believe that this change within the medical culture, is going to take place very soon.
    Clinicians, are witnessing the benefits of exercise and dietary changes.
    When you have community support, I believe, that people are eager to make drastic changes to improve any health condition.
    Dr Chris Van Tulleken understands all too well, that the only way positive and realistic CHANGES can come about within the medical culture, is if the current prescribing habits are altered.

    Its a win, win situation’, as far as I am concerned, where patients get better without all the unnecessary side effects of medication. Imagine if patients had support to wean themselves off medication, slowly. ~ the outcome would be very successful.

    Less pills + exercise + changes in diet = Better Health

    Thank you, Chris for trying to create changes within the current medical system. People need support, when things go wrong, also.
    I appreciate what you are trying to achieve. Lets hope that the current education in universities CHANGES also, because it all begins with what potential clinicians are being taught.
    Kudos to you for creating changes and making consumers aware of the potential risks associated with medicines.

    https://www.youtube.com/watch?v=iFIlGODWM2E

  7. As a victim all I have come across is ignorance and blaming non-existent psychological factors about it. What a joke… I knew from the day 1 it is escitalopram (Actavis) that was causing all the problems. My skin went numb, including genitals, in under 45min of taking the first pill, 1x5mg. I didn’t realize that ALL the effects I was experiencing were drug-induced so didn’t understand to stop there. I continued another two months during which my quack continuously proposed upping the dose to 10mg. I refused saying that this feels like a hefty dose already. At 2 months I finally understood all the mental haze and impotence+asexuality I was experiencing was drug-induced. It didn’t take me more than 5 seconds to decide on stopping the drugs. The next time I saw a quack (another one) she too was ready to up the dose right away when I said I am already withdrawing. I am not going to the withdrawal hell here. Sexuality or functioning never returned. It’s been 4+ years now. I hear all the same BS as did the 27-year-old did; “nothing to do with the substance, you’re imaging, psychological factors….”, even that “don’t think about it”! Cool! That must a be solution to every human problem I just have not heard before. Gladly, at that point I already knew better and wasn’t in a position to be fooled by the docs and quacks again.

    I thought about killing myself being the best option and had already done “practice rounds” at my chosen location. Thank god I then happened found Thomas Szasz! His writings kept me going, and still are. To understand the system from the bottom up gave me something unique that I still carry with me. I fight for the will to live. I am only saddened I never got to write thanks to him. He passed away half a year before me being poisoned. I have dedicated the last 4+ years to educating other potential victims of my country to beware of psychiatry. Informing people of the fraud that psychiatry is has been something that I “enjoy” (I can hardly feel emotions anymore), something that thus far has pushed my decision to suicide to the unknown future. I dream of the end of psychiatric slavery. My deepest condolences to all the victims of psychiatry. And my highest respect to late Thomas Szasz for his honesty and high moral! Rest in peace, my hero.

  8. PSSD is real. PSSD is permanent. PSSD destroys your whole life. Unable to feel attraction or urge. Unable to have a relationship. Unable to have kids. Everything else becomes pointless. A whole life stolen. The only one I had.
    Reflecting back, having gone through the extended hell of withdrawal. SSRIs get you real fast. The sexual dysfunction happens real fast. Apart from PSSD, the other thing you are left with is a screwed memory. All those times when you were on, or were coming off SSRIs, are not real. Real memories are not formed. They make no sense. They are disjointed bits and pieces, like fragmented memories of an unreal dream. And after withdrawal, your memory no longer works, you can no longer properly record or recall. Cognitive abilities are seriously compromised. My IQ scores always used to come out between 145 and 151. Now I cannot even perform simple mental arithmetic. It is eight years since I touched an SSRI. The first time I ever experienced a lack of urge in a romantic situation was after maybe 10 to 14 daily doses of SSRI. I have tried everything. There is no recovery, there is no fix, from the damage done. And there is no help or understanding. It’s tragic. You are left with nothing but nothingness.

  9. Dear everyone on RXISK, who has been impacted by these medicines.
    We are all constantly reminded by what these medicines can do and I totally agree that there will be constant triggers that will remind us of the damages these medicines can create.
    Look at all the fantastic people who are working, courageously behind the scenes, on our behalf. I am humbled and indeed very grateful that they are trying to chip away at old paradigms, that need desperate CHANGES.
    I understand and appreciate, all too well, that our lives will never be the same again however, by changing our diets, exercising and participating in activities that bring us joy, will hopefully change our mindsets.
    Some of us have had our brains damaged.
    Some of these medicines have altered people’s behaviour.
    Some of us have lost our libido.
    Many innocent people have ended their lives.
    Many have had their lives ruined because of these medicines however, it should not prevent us from speaking up, even if many don’t believe or dislike us for doing it!
    If it has happened to us, it can happen to anyone else.
    If we can educate a universe that has not experienced our journey’s, we are opening people’s consciousness by making them aware that **** happens!
    If David Healy has given us a platform, to write to our hearts content and let it ‘rip’, this is also part of the healing process.
    The RXISK community are so incredibly supportive and positive.
    Although, many have been through unimaginable experiences, they still manage to pull through and create an awareness which is second to none.
    This is our ‘passion’,
    This our what keeps us alive.
    Just when we thought we had an easy exit from this life, the challenges that we have all had to deal with, draw us back in, to remind us of ‘why’ we are here.
    If someone is reading this and feels like giving up, I just hope that a few words of encouragement will lift up your spirits and give you the strength to carry on.
    Yes, we have been dealt the wrong deck of cards, have suffered and are now, in the present moment trying to do our best to get our story out there and create CHANGES.
    Writing a book, taking ones frustration in art work, writing on RXISK, creating a Facebook page, you tube or better still, getting a movie director to base a film on your life ~ Erin Brocovich, move over! etc., whatever inspires you, will bring out the best of you. Money does not motivate me. Getting the message out there does!
    When one is in the midst of a storm, you just feel like giving up.
    Please, be kind to yourself and give your body, mind & spirit time to heal.
    It might not be the healing we want however, if little improvements, occur over time, this is a good achievement.
    Life is too short.
    I have been given a second chance,
    Although, my health is not 100%, I can choose to be upset or I can choose to change my mindset.
    Mind you, this process has taken me quite a considerable amount of time.
    I am positive, despite everything we have been through, that positive changes will occur.
    It begins within educational institutions and if our voices can be heard within the corridors of universities to the corridors of power, imagine what we can achieve!
    Changes take place when lives who have been impacted are heard. We are strong and powerful beyond belief, so please believe that we are the educators of medicine who will revolutionise BETTER HEALTH CARE.
    We have already planted that seed.
    Let your experience be the driving force that sets others free.
    Our voices will be HEARD.
    A big thank you to David Healy for without RXISK many would still be stuck in first gear.

  10. As Katie B-T so wisely says, it’s the ‘not bring believed’, the not being taken seriously, that is the worst thing of all to bear. I’m not trying to negate the role of the psychiatrist in prevention of suicides like the one Katinka refers to at the end of this piece, but if one stands in the psychiatrist’s shoes, faced with someone who seems pretty sane, intelligent, but declaring, when pressed, that yes, they want to die, I can see that if they are in ignorance about the side effects of these meds, in particular the PSSD, they may turn their backs in desperation, (especially due to cut backs in the NHS) shrug, and pronounce this as attention-seeking behaviour. Then the sane, (well, more than sane actually), person goes ahead and leaves the unbearable pain of this life, and mostly because they have not really been believed when they say they want to die. Presumably the psychiatrist feels much saddened, but also confused?

    We were talking to someone who is a ‘Samaritan’ the other day, and asking them whether they knew what akathisia is, and also the terrifying effects that psychotropic drugs can have on some otherwise ‘sane’ people. This person said that the main thing about Samaritans is that they ‘do not judge’. They don’t give advice about medications, their role is to listen, maybe to engage the person in discussion about anything at all, and maybe in the course of doing so, this listening person may be of help. The most interesting thing they said, for me, was this: ‘When someone says to me they want to die, I ask ‘do you want to die just for a little while, or do you want to die for ever?’ If it’s for just a little while, then maybe current stresses have just become too overwhelming and to escape them is what is needed. But if it’s explained that they want to go for good, then something has happened that they feel is irreversible and hopeless’.

    I am trying to see whether PSSD would cause the latter response. I have an awful feeling that it could. In which case, it would be marvellous to know more here about current research, and to understand how we can bring hope to these very sane, but desperate people. I know my son was sane. I know he was worried about PSSD and blamed himself for it. It was doubtless the escilatopram. I know the psychiatrist was probably right when he told him he was not depressed. And I don’t want to witch hunt that man, who maybe just did not ‘get’ what the drugs had done to my son, although years back he had himself contributed to a Paper on the effects psychotropic drugs can have on libido. Maybe his memory failed him….

    But if we can’t get all of psychiatry to wake up FAST and see what medications are physically doing to the bodies and minds of these ‘sane’ human beings, the suicide rates will go on rising and the world will keep shrugging and saying ‘we need to talk’, as in the UK campaign launched in UK by William, Catherine and Harry in the Media. But unless we can talk about EVERY element of this, especially the PSSD, it isn’t going to help greatly. It’s good, yes, of course it is, but it’s nowhere near enough. And like Katie B-T stresses, ‘no one will believe you, that these drugs could be on the market and be known to have these effects’. People tend to say, ‘oh, surely that would not be allowed to happen!’ If I had five pounds for every time someone has said that to me about RoAccutane or Seroxat or Escitalopram, I’d be pretty well off now.

    We’re hoping to get a chance to push the AKATHISIA awareness before the front line responders soon, knowing that they can’t offer medical advice but at least, faced with a sane/rational person who says they really want to leave this earth, they can be aware that prescribed drugs COULD be the prime problem here, and could maybe ask about side effects, especially PSSD. Things are so much more bearable when you know there are others feeling just like you do. People like Katie B-T are incredibly brave, wonderful and deserve so much support. We must get it for them, and make their friends and families listen and believe.

  11. I have a constant sensation that I need to urinate since November 2013 in response to the SSRI taper. On and off. Mostly on for years. Currently on. Like holding back a waterfall. Pudential neuralgia. It’s better when it’s from my intersistial cystitis (also have). But there is nothing to help it when it’s this. And this is one of many, many crushing symptoms since the taper (see post a few above). How does one come to accept this and move forward??

    • Katie B-T this is absolutely dreadful. Does DH know whether there is research currently going on anywhere to understand this kind of physical damage? If there isn’t, how could we lobby to get it underway?

  12. We’ve recently been contacted by someone who is in a similar position to that in which we found ourselves in 2001, and who is desperately fighting to keep their youngster from ending their life, like sadly ours did. Although, with a small group of others, bereaved by this acne drug, we’ve campaigned for about 4 years, got Government to tell MHRA to look again at the psychiatric damage this drug is thought by many of us to cause, I’m afraid we have probably not been able to save many others, as we are so small in comparison with the might of Big Pharma.

    We’ve done our best to keep raising awareness about the dangers of RoAccutane-isotretinoin, but must confess that till this week we have felt, speaking personally, that we may have run out of steam. However, the person who contacted us very recently, has ignited the fire in our belly again. This person so mirrors the desperation we felt for 11 years when fighting to save our son. They have determination in their desperation, they know SO much more than we did, even in 2012, and they have researched extensively. They can still save their son.

    They understand, from having contacted RxISK some time ago, that stories from parents like them, about damage to their young, reach RxISK almost every other day, but apart from being advised to read all the Blogs there to see how others cope, there is nothing else that can be done. These parents’ overriding concern is the sexual dysfunction issue, which, as can be seen on THIS post of Katinka’s (even though this specifically relates to SSRIs causing PSSD). The most awful part of this is that the youngsters keep quiet about this problem, sometimes remain in total denial when GPs are approached, because of the shame and horror of it. But it worries them, literally in some cases, to DEATH. I’m sure it was one of the factors that drove our son to end his own life.

    I’m scratching my head to think what more we can do to continue this fight in some effective way:

    There is strength in numbers, but so many people are reluctant to admit to this damage to their sexual functioning. But the RxISK post ‘Accutane….’ Is shown on this Blog as the most viewed here, with 100 comments, and each person who writes there about their experience, sounds as concerned as we are. Is there any way RxISK could enable all these people, with their permission, using their email addresses, to enable them to get together and form a big Action Group with us? We know that David Chow worked tirelessly and courageously with the RAG (RoAccutane Action Group) Forum for many years, till he died, (RoAccutane damaged him too) and people contacted him, but sadly the world lost him in 2015.

    In life, our son would definitely not have wanted the sexual dysfunction problem discussed in his own case, the shame of it would have seemed too awful to admit. This is of course why ROCHE do not specify on the PIL how problematic this seemingly regularly experienced side effects can be. Nor how it can be permanent, or last for many years. They MUST surely realise that youngsters will either not guess that the problem comes from the drug, or even if they do, embarrassment will be a bigger factor to stop them reporting it. If acne sufferers knew that this drug changes their hormones, DNA, cells, brain chemistry (to name but a few effects), we’re willing to bet that they’d try anything other than RoAccutane-isotretinoin to heal their skin. And there are plenty of other effective things to use, which may take a little longer, but surely, keeping your ultimate sex life able to function is worth a bit of patience and effort with healing your skin now. And if there is scarring, like our son unfortunately had, it can always be removed by laser. It isn’t cheap, but it’s very effective, and our son’ s back was amazingly transformed by it in 2011 by Dr Tony Chu.

    The person who contacted us knows that their youngster has not taken any antidepressants, so it is only the RoAccutane-isotretinoin that has initiated their youngster’s problems, and before the drug they were fine in every way. We know that so many others have said the same. In our own Group of 9, we know for certain that 3 never took antidepressants, one in particular, who was just about to qualify as a doctor, only lived for about a month after taking this drug before his mind was tipped into psychosis. He had been to see the GP and been offered antidepressants but had not had time to even open the packet! At his Inquest, the doctors lied, saying he had been depressed. Those who knew him well knew this was total rubbish. A happier, more successful, more loved, more mentally balanced young man one could not have imagined.

    There seems to be a lot of lying and back covering going on. Katie B-T writes here about the hell of not being believed, on top of dealing with all the drug induced neurological suffering. How, one asks oneself, could any dermatologist with an ounce of intelligence, inflict possible loss of a sex life, on any young person? And even worse, how could any doctor then deny to that brave but terrified youngster, that it’s not the drug, it must be ‘all in their mind.’

    So, I’m wondering if RxISK could ask RoAccutane sufferers, when they report in to David Healy, if, only of course with their permission, their email addresses could be collected together if they would like to form a battalion of activists, and even if we can’t take on Big Pharma, we could maybe do something about legal action in regard to the dermatologists who prescribe this drug, many of whom seem to be in denial about any responsibility. Surely these dermatologists have a Duty of Safety to patients? Surely their consciences only let them go on prescribing it because there is nothing else, they feel, that quickly reduces acne? Surely they must know, via the B.A.D that giving it to anyone is like playing Russian roulette with their lives? Many youngsters are given it with a few low key warnings, aged 16 or even younger. They may never ever experience a sexual relationship afterwards. We can see how low key the warnings are in the recent BBC2 ‘Victoria Derbyshire’ programme on 13th March 2017. No mention of possible sexual dysfunction or suicide following taking RoAccutane-isotretinoin by the panel of dermatologists and other experts brought in that morning discuss the Acne Investigative Report done by BBC Newsbeat.

    Hearing the desperation of the parent who contacted us so recently makes us feel, just as one contributer on the ‘Accutane’ post of 100 comments put it so well, ‘DH we MUST do something. This must stop’. Or words to that effect. If dermatologists become wary about being sued, maybe they will stop prescribing this and use their energies and intelligence, dare I say also their basic common sense and care for humanity, to lobby for research into a safe acne drug and also for research into whether spinal cord nerve cells are being destroyed by RoAccutane-isotretinoin, (as we gather has been demonstrated in mice) which may be affecting sexual functioning.

    This is what the PIL states, in our records, about sexual functioning side effects –
    Under the heading of Mental Problems, Rare Effects, 1 in 1,000. Depression or related disorders ……loss of pleasure or interest in social or sports activities.’ ‘Your doctor may tell you to stop taking RoAccutane. That may not be enough to stop the effects. You may need more help, and your doctor can arrange this.’ (!)

  13. That was actually the trigger for my suicide attemp; not being believed. I went along to another GP and almost pleaded with him to take me seriously that the antidepressants could have caused my long lasting sexual problems. He practically laughed in my face and said antidepressants only cause sexual problems when you are on them, and not after you stop taking them. He then told me he was very busy, and that he had other sick patients to see. Basically making me feel ashamed for bringing the issue up with him. I knew he was wrong, but no one would believe me, and that was what pushed me over the edge to try to take my own life. I had tried so long (for years) to get help for this problem, but no one would listen. If only a doctor or medical professional would have taken me seriously and believed me, or even entertained the idea that these drugs can cause long lasting sexual problems, i would not have tried to take my own life. Since my suicide attempt 4 years ago, i have been to quite a few more doctors to try and get someone to believe me that the long lasting sexual problems i have could have been caused by citalopram. I have yet still to find a doctor who has heard about PSSD, or who will take me seriously. It is a very lonely place to be suffering PSSD, especially as a young man.

  14. I wish there was an in-person group I could go to for support from all I am going through. Part of trauma healing is through getting suffering recognized and getting support. I am very very grateful for all of your help and for RxRisk. I just wish there was a physical location I could go. I have also tried to make a difference to make changes in the world through social action but I couldn’t get anything off the ground due to lack of interest on others parts. I welcome ideas. Additionally, I think we need to respect everyone’s path. I tried to get support from Surviving Antidepressants and said I wasn’t interested in any more tapering (wish I had never tried–I wouldn’t have all of this irreversible nerve damage and would have just cut my losses there with the other effects the meds were causing). All the site was interested in was me posting my tapering history and me getting back to it. I don’t even fit in there. They weren’t hearing that I got the nerve damage from the tapers.

  15. May I just add to what DWR has written, that the same formula of a collective legal approach from RxISK Bloggers could be applied to SSRI sufferers, indeed, anyone who has been damaged by psychotropic drugs. I think DWR feels particularly desperate for the young RoAccutane-isotretinoin users because they have gone to their GP and thence to the dermatologist, for help with their ACNE, which may be causing them great unhappiness and loss of self esteem. They then get routinely prescribed RoAccutane because they press for it (in many cases) as they’ve heard it’s a miracle drug and the dermatologist, with limited time, does not go into details about the more horrendous life-ruining side effects. Or, if a parent presses the dermatologist on this, s/he will say they’ve never come across anyone with these problems and they are EXTREMELY RARE. They are not.

    This piece written so clearly by Katinka relates to SSRIs and the PSSD they also cause. So often the RoAccutane user gets low mood and is automatically put onto SSRIs. You can see from DWR’s comment how ROCHE imply in the PIL that if a user experiences any problems with the drug, the answer is simply to stop the drug, on advice, and trot along to their doctor (GP) who will make everything OK again. No s/he won’t, because they can’t. But they can offer an SSRI. Which will probably make things far worse, firstly by triggering a mini psychosis from the synergistic effect of the two drugs, possibly necessitating hospital admission, where other meds like antipsychotics will be added, when the patient relays their anxieties about suicidal ideation. But the patient will sometimes appear as sane as you or me, so the psychiatric staff will admonish them for talking about suicide seriously and label them with maybe a personality disorder or plain attention-seeking. They are doomed from the very start.

    These youngsters trusted the doctors. They had an obvious physical skin problem for which they needed help. They end up with a life like PCNG graphically describes here. TWO categories of drug have now pitchforked them into this hell. And they are SO young, their lives have hardly begun. And cruelest of all, as Katie B-T describes, is the ‘not being believed’, on top of all the pain and loss of a bright future. So, is it any wonder that for many, suicide is the only way out. PSSD is the last straw.

    If a ‘trusted’ doctor assures you something is ‘all in your mind’, total desperation engulfs you if you know you weren’t like this before you took the medication. Family will not back you if doc doesn’t stand with you. All seems lost. Except if you can reach out and stand together with others on RxISK, and maybe collectively we can DO something. If we threaten to sue the prescribers, be they dermatologists, GPs (for SSRIS) or whatever, maybe those people will not continue to give them out like Smarties, and will monitor patients’ progress weekly. And if they haven’t the surgery time to do this, they’ll err on the side of caution. If you need to buy a shotgun in UK you have to verify your need for it with the police who only then issue a licence if they are satisfied. You have to keep it in a locked cabinet. You are thus made aware, if you didn’t already know, that it is regarded by the authorities as potentially dangerous. All these mind and body affecting drugs are just as dangerous and can kill too. So reading an I-pledge form through with your doctor and signing that you BOTH understand ALL the possible side effects and will behave responsibly, is vital. The MHRA don’t like this idea in UK and won’t support it. We know. We lobbied hard for it in Parliament. They feel it would be too time consuming for doctors and too upsetting for patients (!) what CAN one say to that?….. Could we call it censorship? Where is the protection of people’s civil liberties by keeping them in ignorance?

    • Antidepaware website has a VERY long list of what we can only call ‘deaths by suspicious causes’. I wonder, if we got their permission to sift through the list and pick out each and every UK case, we could each then bombard our relevant MP with such a list, requesting their attention be drawn to the details and that they draw this to the attention of the rest of the house. Maybe try the House of Lords with the same list? Certainly send a copy to Peter Hitchens – he would surely find it of interest! I wonder where Private Eye stand on such issues? I’m sure the list could easily be lengthened. ALL happening together could be a bit of a hit? ( could make us all feel a little better if nothing else!)

  16. Before I was given PSSD from ‘mental health’ drugs. I was really so happy looking forward to my life, to enjoy all the freedoms wasting time being stuck in the childhood ‘mental health system’ and it’s ‘special needs schools’ had kept me from. I was so incredibly happy to just be able to be in the normal world looking forward to my life, I had just started working as a job and had my own independent home. Flat sharing with friends and moving towns was an exciting goal of mine. 20 seemed a little late to start living but I didn’t care.

    At 21 my genitals wen’t numb and unresponsive to arousal and I was promised it would go back to normal when I come off the ‘medications’. That never happened and they did not know what they were doing and even said the revelation that was a first ‘don’t worry everyone on antipsychotics has messed up brain prolactin female hormone levels’. My family from the age of nine were just under the false impression it was there to help me with my Tourrettes Syndrome. Alongside that junk supposedly ‘antidepressant’ poison as the must for OCD.

    They then said it ‘wasn’t possible’ your prolactin would still be high ‘the drugs are completely out your system’ BS, and talked to me that It’s probable I have some ‘unrelated’ brain tumour, then some ‘unrelated’ hypothorydoism (from blood tests). I didn’t have either, but PSSD remained.

    I wish I was dead every day now. They have completely stripped away my humanity at the same time they have stripped away my sexuality. The degrading de-humanisation IS the same as an ‘eunoch’, look it up… De-masculaniting another human being in this way violating their sexuality and emotions for life every second of every day is the worst human rights abuse you could imagine. I cannot bear being around other people in the same room anymore, I simply am not human with human rights compared to them.

    Naturally I struggle to make sense to them, or connect in any way with them. It is unbearably life destroying and de-humanising. They are humans, and I am not. Others were allowed and encouraged to do this to me, and they refuse to warn others so they can pick up their money and live their own well funded fulfilling lives with families. My life is over, they stole it. And they will steal many others before they are finished.

    I have no ambition anymore, have other sustained damage to my digestive system for example (I shit myself too). I wish I was dead, I really wish I was dead or they could give me my life back and I could just go back to normal and get on with the rest of my life straight away. Withdrawal was bad enough, why could that not have been punishment enough?

    It’s been over 7 years with this permanent hell. I do not know how I have managed to still be here. I am dependent now, I volunteer part time and being around other people at work is extremely torturous. Maybe I will die after I have finished exposing it myself or when my mum dies. I had ambitions, I don’t anymore.

    Not that I believe in ‘diagnosis’s’ as the real way to explain peoples nature anymore. But drugging people and making the so called ‘mentally ill’ peoples genitals go numb on mass without telling or asking them is abhorrently cruel.

    This is what other children have to look forward too…

    • You tell it just how it is. Someone else on here once posted that life after SSRIs is like being a house plant, which I think sums it up quite neatly. You are alive, but there is nothing.

  17. Daryl, you’ve explained your situation so well, and what you are suffering is SO absolutely terrible. I’m glad you have a Mum. I was a Mum, and my son meant the world to me, as you will to your Mum. I know my son died for very similar reasons to what you and the others on this Blog are describing. You’ve made it through 7 years, and you write well and with determination. It is of course your life to end if you want to, but the thing is, like Olly, I’m sure, as you say, you just want it back as it was, you don’t really want to end it. You’ve been put in this appalling situation by doctors, hoodwinked (seemingly very easily) by drug companies.

    We HAVE to do something to make Government put in place funded research to understand what is happening to the neurology of so many thousands of people like you and our son. Spruce is bang on the money when he writes that in addition to all the physical pain, the ‘not being believed’ and having doctors laugh in your face, is the final straw which pushes people to end their lives. Maybe, awful to say, they know that the drugs they prescribed really HAVE caused this damage, they believe it to be incurable, so they actually hope sufferers WILL end their own lives, to remove themselves from their radar. I was told repeatedly that if my son did end things, there was nothing to be done to prevent it. At the end we felt he was almost goaded into it.

    But, you guys KNOW so much more than we and our son did. You know it is the drugs. You know the doctors and drug companies are perpetuating this evil. You know it is not you who are to blame. So, easy for me to say, I know, but if you possibly can, hold on and lobby with us for a cure, don’t let these self satisfied, affluent pieces of work drive you off the radar. I would give absolutely anything to have our beloved son back. I realise that may sound selfish. I’d have to qualify that by saying, have him back but making sure he knew all the stuff you guys know, so he stopped blaming himself. But I’m not suffering like he was and you are. I’m just speaking as a Mum, suffering in a different way now.

    As to Katie B-T wanting a support group in a physical location, I think this sounds exactly what we’ve always wanted to do. If we could get some funding to set this up, (it ought by rights to come from Big Pharma) we are in the centre of UK, and we’d be prepared to do it. But maybe Katie B-T has in mind something really large, like in a disused hospital? Ours would be in a country house sized place. The clinical aspect of it could be tricky to provide, but the mutual support, and compassion, would be easy. If wanting to discuss this further, Katie please get our direct email from David Healy and let us know.

    People power is amazing. Words are wonderful but sometimes meeting up with others face-to-face, people who really have experienced the same suffering, is what we all need. There MUST be a way to get this moving……

    • Heather, – as Shane used to say so often in those extremely dark days “It’s not that I want to die, it’s just that I don’t want to live feeling like this”. He DID live, thankfully, but is still so far from his real self – but, now he’s found a person who BELIEVES in him and everything he’s gone through, his attitude is completely changed. His actual suffering has changed very little but he now knows where he’s heading and is supported every step of the way. If one psychiatrist can treat in this way, why can’t they all? Maybe the problems are really for a psychologist to deal with but, in the absence of a plentiful supply of such people, surely each and every patient deserves the same attention. Not the same medications as the more severely ill but the same attention to encourage better wellbeing.Therefore I do agree that it isn’t the suffering alone which causes the desperation – it is mainly the lack of empathy from those who should know better. Another thing that we found was that suffering from a ‘psychological disorder’ was seen as the ‘poor relation’ by so many professionals – the attitude being almost as if this category of patients were simply timewasters. In fact, one CPN told me that Shane “has all the answers – he needs to get on with it” and told Shane to “go and live your life”. A person who, quite obviously, had never, ever seen anyone close to him suffer mental ill-health.

      • Agree with you totally Mary. To keep battling on when feeling as ill as Shane does and Olly did, we need authoritative figures who encourage support and above all, believe us. In August 2012, having been told he was a time waster by NHS psychiatrist and his cohort of social workers acting on his instructions, Olly described to us the terrible head pain he was suffering, the electric shocks in his skull, nose cavity, the shaking legs he could not control. He offered to pay for a scan, wondering if he had a tumour. He was laughed at and told there was no need, it was no doubt ‘just his anxiety’. He said to me, unable to keep still, having virtually lost all hope, “Mum, I will stay for one more month, I will try to hold on that long, but I can’t stand this pain beyond that time.” That was on 25th August. I still, oh so stupidly, partly believed what the psychiatrist and his Team had said. I however promised Olly we’d get another opinion, and was frantically researching private psychiatrists. I was at an appointment getting information on this from a counsellor on 25th September. I then went to see a teacher at his school with whom he had mutual respect to ask him to come and talk to him to raise his spirits, to remind him of all he had acheived, to tell him he was no time waster.

        By the time we had returned to our own home, it was all too late. We had run a marathon to save him and fallen at the last fence. Sertraline and Olanzapine had finally finished him off, as his farewell letter explained. “I have loved everyone who has been in my life” he wrote, “but the voids in my thinking have frightened me so much, I cannot remember sometimes where I am, I am in so much pain, I cannot go on.”

        • This loss of productive lives is so unnecessary isn’t it. When Shane was going through the very worst of his turbulent times, I used to think that we were the only ones being treated in such a dismissive way. It was a shock to realise that this is the norm and that any ‘better treatment’ was, in fact, a luxury! How do these people live with themselves? The love of money, they say, is the root of all evil – by gum, isn’t that true here. I have no problem whatsoever with being told a truth. If, at some points along the journey, Shane was presenting with ‘attention seeking behaviours’ then I would have accepted that PROVIDED it was said to his/ my face and I was allowed to argue the point through. To just be dismissed with ‘ its all in the mind’ just will not do. No-one seeks attention unless they are really struggling to cope with presenting problems. I thought we’d long left the ‘pull yourself together’ attitude behind – but we haven’t; it’s there as alive as ever. The PUBLIC is more understanding than years ago but those in charge of dealing with MH problems, on the whole, the PROFESSIONALS, so called because they’ve studied these matters, are lagging very far behind.
          When a school is failing, they send in a managing team from a successful school to help get it back on track and running smoothly. Why can’t we have a similar scheme for mental health? Every school, on inspection, has input from parents directly to the inspecting team. Why can’t we have a similar idea put in place in mental health? Oh, I forgot, you CAN complain, of course – the complainants are called ‘whistleblowers’ and their lives are made hell for daring to criticise! Constructive criticism is the only way forward – and that must come, openly, from those working in the system and from service users and their families/friends. A whistleblower here and there can be lost in time – a whole host of whistles blowing TOGETHER could get a result. After all , we do live in a democracy don’t we? ?!

        • I’ve tried to explain, by re-visiting the events I witnessed during our son’s last month on earth, that his AKATHISIA was making his life so intollerable that he planned his death, deciding that if he didn’t feel more ‘himself’ again in 4 weeks, he’d give in. His way of ending his life was meticulously planned, and typical of him, he worked out how to go so that he caused the least possible trouble to anyone. The AKATHISIA was unbearable but it didn’t stop the planning process. I guess, the thought that there was a way to bring it to a close, was what sustained him during that last month.

          Also in that last month, he was given Olanzaline and, when that didn’t work, Sertraline as well. These two meds were given to counteract the extreme anxiety he was suffering having been told by the Home Treatment psychiatrist to stop Venlafaxine and Zopiclone and Diazepam at once (no taper!) as ‘he wasn’t depressed and didn’t need them. Ifs difficult to know whether it was the Escilatropram he was on for months prior to the Venlafaxine, the Seroxat before that, or the RoAccutane/isotretinoin that initially changed him, or finally the Olanzapine and Sertraline, that pushed him over the edge.

          My point is that GSK’s ‘expert’ Rothschild in the Dolin v GSK trial this week seems to feel that people suffering AKATHISIA are incapable of planning their death. Not that Stuart Dolin necessarily did, that cannot be proved. But our son had a careful plan in mind. I think, if we are honest, all of us at difficult times in our lives, have worked out the rudiments of a plan. But to resort to using it, you have to have lost all hope and be in unbearable mental and physical pain, and have lost touch with reality.

          The GSK ‘expert’ also said it’s easy to treat AKATHISIA, you just give another drug. In the early stages I guess it could be. That was why our son was given diazepam months and months prior to his death, and probably why he lasted so long. But in the end, that became less effective, and the psychiatrist stopped it, along with the Venlafaxine and Zopliclone as well. I think diazepam can help with AKATHISIA, but only if doctors understand what they are treating and act on it at once.

          Our son had a chemical anxiety which impacted on all the other areas of his life, work, relationships, day to day basic coping with practicalities, (like getting the MOT done for his car), and above all, the joy in living. His chemical anxiety came from medications given to him by trusted ‘experts’. People like Olly are dying every day, when their AKATHISIA becomes overwhelming. I’m sorry to add that bemused psychiatrists and doctors, viewing seemingly sane folk like Olly who express a longing to die, tend, maybe in sheer frustration, to say, ‘go on and do it then.’ Put that attitude, from the trusted medic, together with the chemical anxiety, and you have a lethal time bomb.

          Good luck and the very best of wishes to brave Wendy Dolin in Chicago, and all who sail with her. May their ship come into the right harbour at last and justice be seen to be done.

          • Any drug, as far as I can see Heather, has the power to work positively or negatively for a given individual. Diazepam can be a godsend but once it turns table in your system it can CAUSE a condition very similar to akathisia. It’s easy for these people to say that the drugs work in a certain way and that to combat conditions such as akathisia, all you need to do is add another drug. The truth, as far as I can see, is that once your body decides it cannot tolerate a drug, you will display such conditions as akathisia but adding another drug JUST ADDS TO THE PROBLEM. How many times did I say that “Shane’s body doesn’t react in the expected way to these drugs BECAUSE of the damage that Seroxat caused” – and almost the same number of times I was told that there was no connection whatsoever. Now that we are getting some sense regarding Shane’s medical care, it seems that, since Shane reacts differently to many medications, then EVERY medication that he’s put on will more than likely need to be withdrawn EXTREMELY SLOWLY. At last – some sense. So very sorry that poor Olly didn’t get to the point of meeting a sensible psychiatrist Heather. I’m certain that things could have been so different for you all. Having said that, he is now at peace – and when you’ve watched them suffer, as we both have, that thought alone must be of some comfort.

  18. On better days I try to have hope that somehow I will figure out how to re-invent my life. To be able to re-connect with people again and focus on what I can control. To grieve all that I have lost and to continue on with all of the nerve damage and limitations. .I don’t know how. But I try to hope to. For those considering suicide, there is always ambivalence up until the very end. There is still a part of you that wants to live. Try to hold onto this piece. Very difficult, indeed.

    David has a complex withdrawal research site and has proposed that adverse events from withdrawal are a peripheral neuropathy process. I wish we could get some more ideas and interests to advance this.

    Heather, I’m going to ask David for your contact info. 🙂

  19. Dear Heather,
    We also have to put measures in place so that some scientists, don’t go off linear.
    Putting an end to ghost writers and having all the information disclosed, seems more comforting before a problem unfolds.
    Katie. B, Spruce, Dennis, Darryl and anyone else who I have not mentioned. please, don’t let some professionals push you to the edge! ~They are not worth it!

    You know that you are better than all of these naysayers and non believers!
    Where is the compassion when something goes wrong?
    People gathering in numbers and speaking up, is the best medicine to help each other get out of the conundrum of negative self chatter.
    I understand, completely what you are going through. You are better than all of those who have mistreated you.
    The people who have been harmed by medicines, should put an ad in their local messenger, so that people can talk and become pro-active about getting their local members of parliament, to work/ lobby, on our behalf.
    I am sure, local churches will be happy to volunteer their sacred space for something beneficial. Even better, you can all meet at a local park on a beautiful day and discuss ways to move forward.
    After all, it is about helping one another.
    This is what we have all been called to do.
    Vis-à-vis, is so powerful because when all brilliant minds work together, so much can be achieved.
    Heather, keep chipping away with what you want to achieve.
    We are all brainstorming and no one can STOP us from doing good!

  20. Mary, to pick up on your Antidepaware list idea which you proposed here, this sounds really good. However, to get an MP to act, they have to be approached by someone in their own constituency, they won’t take up your case if you are not resident there. We managed to get between 30 and 50 to write to Earl Howe about RoAccutane-isotretinoin by an amazing piece of luck. The MPs of the other 7 bereaved parents in our Group were very supportive to them, and they all lived in different areas. The year before our son Olly died by prescripticide, we had hosted an Arts and Crafts weekend for many members of my class from school, and they lived all over UK. They all met Olly and he helped some of them with IT advice. They were very impressed by his kind caring attitude, and his friendly personality. So, knowing him as they did, when he died, they were distraught, and galvanised into action each wrote a standard letter to their own MP, scattered all over UK and even in Scotland. To use the Antidepaware contributors, we’d need to ask each one if they’d write to their own MP. It takes time but can be done, so long as they don’t mind being asked.

    As to the House of Lords, that’s certainly worth a try. We wrote to 16 Liberal members 2 years ago. The Liberals at the time, led in Health by Norman Lamb, were very supportive. Peter Hitchens would also be well worth a try. I think we might get more effective and sensible change from him than Government, because he is his own unbiased master. MPs can say all the right words to placate us, but they can’t really do much against the financial and lobbying might of Big Pharma, and as someone pointed out here once, they may have shares in pharmaceuticals in their portfolios, and supporting their pensions. Apologies for scepticism but this is the world we live in. If it were not so, we wouldn’t even be having to do this and the medications would not be marketed at all.

    We need to do this in large numbers and at around the same time – say over a period of two months. We wrote to everyone telling them who their MP currently was, and offering a template of a standard letter which they could download and use/adapt, but this saved them time composing one from scratch unless they wanted to. People, however well intentioned, get distracted with busy lives and forget to follow through, so making it as easy as possible gets better results.

    It needs to be co-ordinated like a military operation, ‘bombarding’ the chosen targets with our letters, in Mary’s appropriate words. This is, after all, a just war that we are fighting. Our opponents will of course be aware of what we are doing, but that doesn’t mean that we shouldn’t give it our best shot.

  21. These are some of the things i have been told over the last 8-9 years by doctors when i have told them i was convinced citalopram had caused my ongoing sexual problems as the sexual problems started the day i took citalopram, and hasn’t gone away;

    Doctor 1- “I am telling you it is not the medication that has caused this”. Me – “how do you know this?” Doctor- “Because i am a doctor”.
    Doctor 2- “your libido will come back when you decide it will come back”.
    Doctor 3 – “You have been getting stuff off the internet from people who aren’t doctors. You can convince yourself you are suffering from all kinds of things by looking up things on the internet”.
    Doctor 4- “I think this is mostly likely related to your OCD”. ( I have fairly mild OCD, but OCD never made my genitals go numb, or for me to have pleasureless orgasms, or have no sex drive. It is strange how all of the sexual problems started the day i took citalopram. I pointed this out to the doctor but he still wouldn’t listen).
    Doctor 5- ” We know antidepressants can occasionally cause sexual problems, but once the drug has left your system, any side effects are reversed”
    Doctor 6- “I know you get anxious, i think this is most likely related to anxiety”.
    Doctor 7- Me- I am convinced the citalopram has caused my long lasting sexual problems. Doctor- “Don’t be silly”.
    Doctor 8- ” I think you should think of something else, i think you are fixating on this”. ( The only reason i keep thinking about it is that it hasn’t gone away. How is thinking about something else going to make the sexual problems go away).
    Doctor 9- ” I notice you have spoken to some of the other doctors here about this. I think you shouldn’t keep bringing it up”. ( I only keep bringing it up because it hasn’t gone away, and no one is taking me seriously).
    Psychiatrist/ mental health team official response in writing- “We acknowledge that you feel you are suffering from Post SSRI sexual dysfunction but Post SSRI sexual dysfunction isn’t acknowledged by medicine as a real condition, and therefore we cannot comment on whether you may be suffering from it”.

    These are genuine responses i have had from different GP’s, and one psychiatrist over the last 8-9 years i have had this condition. It is almost impossible to get doctors to believe this condition exists, and once you have been labelled as having a mental illness (like most people who take SSRI’s have) anything you say is viewed through the lens of mental illness, even if your mental illness isn’t psychotic in origin (and therefore is unlikely to affect your view on reality). The medication is never at fault, but it is you that is the problem. You are trapped in a body that can’t feel sexual pleasure, and no one will listen!

    • Sounds familiar! I gave up turning to Docs for help. They deny the condition exists and there is no cure for it anyway. Chances are they will just try screwing you up even more, with some other filthy chemical. I understand the need to turn to someone for help and the Doc seems to be the natural choice, because they pretend they know everything, but unfortunately, they don’t. I’ve just ended up hating and despising that deceitful, snake-oil profession with a vengeance.

      It is funny how every now and again we get another “good news story” about a newly discovered beneficial effect of taking SSRIs. I think the latest is “SSRIs in prostate cancer stop it spreading to the bones”. Funny how they almost never discover any bad news, bad effect stories; funny that, don’t you think?

      The medical industrial complex from the scientists to the drug manufacturers to the medical doctors is corrupt to the core. They are deceivers and deniers, bullsh!!ers and liars.

  22. spruce, this is EXACTLY how it happens. I think all these comments plus any contributed by other PSSD sufferers should be collated and made into a book, to be taken into every medical consultation about this.

    If it wasn’t so ghastly, it would make a good comedy sketch for the Two Ronnies
    I think the ‘best’ one is your final one and it’s one I’ve had, admittedly when akathisic from steroids, almost unable to get my diaphragm in my chest to allow me to breathe, pains down arms like heart attack symptoms, eyes so swollen could hardly open them, and shaking uncontrollably,
    GP ‘ well, I know in your mind you THINK you are having a problem with the medicine but it’s all in your mind and what you need is a psychiatrist, so I’m not discussing it with you. You can’t be allergic to steroids, steroids couldn’t do this, we use them to TREAT allergies.’ End. Patient dismissed, feeling confused and desperate and at that time would have been grateful to die, as felt like was going to anyway. The worst bit was, he’s an expert, I am supposed to trust in his knowledge, he must be right, I must be wrong, so …..I must be crazy. God help me, I’m done for.

    That was, for me, one episode and took a year to right itself. You folk are suffering for years on years. It is beyond words. Totally unacceptable. I am so so sorry. We have to change this, as a community. But how…..

  23. Along with the more obvious aspects of PSSD such as the numb genitals, almost pleasure less orgasms, and non existent sex drive, there are a lot of more subtle changes i have noticed since developing PSSD almost 10 years ago.

    Most of these changes are to do with emotional, physiological and behavioural responses linked to sex, but i have found since first taking citalopram almost 10 years ago i have also had a general “numbing” of emotions which has also had an effect on my life.

    Some of the emotions and physiological responses i will mention have completely vanished since i first took citalopram, but others have been greatly lessened to the point that they barely have an effect on me.

    Every once and a while these emotions occasionally “flicker” on in my brain for a few seconds and then vanish again, and it is then that i realise i haven’t felt these emotions since first taking citalopram. Often i had forgotten these emotions even existed. It is like citalopram wiped out a spectrum of emotions and then after a while you forget these emotions existed and you come to accept your new reality, but some how you know you used to feel different. Some of the emotions i used to feel i would struggle to properly describe, i just know i used to feel them and now i don’t.

    Emotional feelings and physiological responses to sex that have changed/ lessened or gone since developing PSSD;

    * Sexual feelings i used to get by just being around women, but that are now almost completely gone; The way women’s femininity used to cause sexual feelings within me. The way they played with their hair, the feminine sound of their voice, the way they laughed, the way they would look at me, the way they moved their bodies, their mannerisms, the way they would smell i.e their perfume, and even the clothes they would wear. All of this used to have an affect on me sexually. Not anymore. All gone. None of the above has any effect on me anymore.

    * The way touching the skin of a woman i was being intimate with would give me exciting thrilling type sensations that would make sex worth pursuing. Not anymore. When i touch a woman intimately now it is as if i could be touching an inanimate object, like a table top, or a tv remote. There is nothing.

    * The way noises made by a woman during sex used to turn me on. Now noises during sex don’t affect me at all or cause any physiological response or sexual feelings/ desires.

    * Visually. Seeing an attractive woman naked used to have a strong affect on me. It would make my heart race, my mouth would go dry, it would make me sweat, and my stomach would have flipping type sensations and i would get an erection. Also in my mind it would be like fireworks would be going off with different sexual feelings and desires. I don’t get any of this either anymore.You could put the most attractive woman in the world naked in front of me and it would be like watching paint dry. It really is that bad.

    *The way written and spoken words could turn me on and cause sexual feelings and a physiological response. Things said during sex by a woman used to turn me on. Also reading about a sex scene in a book could also turn me on. Neither turn me on at all anymore.

    * Feelings of sexual jealousy and feelings of shame around sex have also been greatly reduced since developing PSSD.

    Emotional feelings and physiological reactions to romance/love that have changed/lessened or gone since developing PSSD;

    * “magical” type feelings and physiological response like a racing heart when holding hands or kissing a girl i like has been greatly lessened and is almost absent.

    * “magical” type feelings when you think of the girl you like, greatly lessened.

    * “magical” type feelings when you hear a song that reminds you of the girl you like has been greatly lessened.

    Behavioural changes since developing PSSD;

    * I barely listen to music anymore as most music is about love and sex in one way or another and it makes me feel depressed when i listen to other people celebrating love and sex when i cant enjoy that area of life.

    * Interacting with peers. I don’t feel a part of youth culture as a big part of youth culture is getting excited about girls you want to date etc and celebrating love and sex. I don’t feel i can relate to my peers in this way, and i cant get excited about love and sex. I don’t feel i interact with my peers in the same way i used to before developing PSSD.

    * Interacting with women. Without any sexual feelings or desires i feel i interact differently with women compared to when i didn’t have PSSD. Some potential romantic relationships have ended up becoming platonic friendships because of this.

    Other emotional changes since developing PSSD;

    * Feel less aggressive and more subdued since losing any sexual feelings.

    * Feel emotions of excitement for activities i used to enjoy etc, is reduced since developing PSSD.

    * Feel a general sense of my emotions being more numb or lessened in some way since developing PSSD.

    As you can see PSSD can affect more than just your ability to enjoy sex. I often worry about my future and what it means if i never recover from PSSD. I had wanted to start a family at some point, but i don’t think i could maintain a relationship with a woman, and fake sexual desire for her over the years needed to start a family etc. So basically my chance to have a family might have been ruined by PSSD.

    Also i developed PSSD in the prime of my life, so i feel i was robbed of my best opportunities to find the type of partner i would like, as you look your best etc, when you are in the prime of your youth.

    Even if i do recover from PSSD i can see me maybe having permanent psychological issues with sex and around how i feel about my masculinity. Also i don’t think i will be ever able to forgive what i missed out on etc. Its not easy having no sexual feelings from the age of 22-31 while all of your friends are enjoying sex etc. You also have to keep it to yourself because of the stigma of having sexual problems, and with the doctors not believing you as well, it came close to destroying me.

    I swear i am telling the truth about all the changes that PSSD has made to the way i feel emotions and physiological responses linked to sex and romance, and even some emotions not linked to sex and romance.

    I keep hoping that i will eventually recover from PSSD but the years keep going by and i just keep getting older.

    • Yep, a good description of what it does. Exactly the same with me. It’s what it does to people. I fail to see how it can really be up for debate anymore. To my mind, anyone prescribing or marketing this poisonous, damaging filth is guilty of criminal negligence at a minimum. What this toxic crap does is not a secret, it is not in doubt, the information is out there, this isn’t “news”, voices such as ours have been crying out the truth for years. Those so-called medical professionals who turn a deaf ear to this reality and continue to peddle this misery are the scum of the earth; they should be struck off and put behind bars.

  24. Spruce, I don’t doubt any of what you’ve written, not for one second. My son used to describe it all just the same, but not as clearly and in so much detail as you have written here. He didn’t go into the sexual feelings bit, but through horrible gossip from an older woman who played around with his emotions and, unwell herself, trying to get him to marry her although she had sons almost his age, we learnt of cruel text messages she sent around to mutual friends about this kind of thing. So his shame would have been overwhelming.

    The damage that has been inflicted on you, him and without doubt so many thousands and thousands of others, is utterly appalling. If you are getting just small flashes of feelings in your head that come and go, there must be hope that these will lengthen with time and you will gradually recover. But we need to get Big Pharma to turn most of their attention in research NOW to understand what neurology their drugs have messed up, and how it is going to have to be put right.
    How the hell do we do this? Solidarity and a massive march on Downing St maybe. With a forthcoming Election, maybe we have more chance of exerting pressure than we would normally have.

  25. The one thing that really bothers me is that we trusted our lives, with certain professionals.
    There are some who believe that their prescribed medications, had nothing to do with the harm, suffering or death, that these medicines induced.
    Spruce, you are not alone.
    There are many sufferers out their that keep low key because they either feel embarrassed or ashamed or have just lost faith in the system and processes.
    The stigma of being falsely labelled would put many into psychological despair.
    It is de-humanising and demoralizing when those we put our life in, treat our concerns like a joke.
    It is disappointing when those who are suppose to regulate the safety of these medicines, keep producing them without the appropriate warnings.
    It is beyond my comprehension how professionals believe that the benefits outweigh the risks.
    How can man do this to their fellow man?
    Western medicine is not about healing for some.
    It is associated with shame, distrust and incompetency.
    Once that trust is betrayed, many don’t go back to seek professional advice.
    Sadly, many stay away to avoid being psychologically bullied.
    Sad, considering many consider themselves HEALERS!
    Spruce and many silent sufferers, you are not alone.
    Walk with your head up high and do the best you can ~ easy said than done!
    We can’t have lies and cover ups, twisting, manipulating or distorting the truth for many decades to come.
    It has got to STOP and if those in their chosen profession feel strongly against the way the system treats people, they will make a stand for the vulnerable and voiceless.
    The change has to come within professional cultures that believe it is appropriate for this injustice toward our fellow man to carry on.
    People spreading the word is more POWERFUL than trying to change something that is so archaic and has NO RESPECT for humanity.
    If these medicines have helped so many, think about the many who have had their lives RUINED by these medicines.
    To have NO APPROPRIATE WARNINGS is like asking for TROUBLE!
    Caveat:
    ingest at your own risk because you never know when that trigger will be pulled. This is what happened to me and no one is immune from being harmed.
    You may be lucky or just end up fighting for your life!

  26. I think Kevin was the one who called himself “ManfromUK” on YouTube. He wore a red shirt in the video and told about his experiences and the SSRIsex support group on Yahoo. (His video was featured on the website.) I had some correspondence with him through private messages, but the video and the messages disappeared. I’m wondering if anyone knows what happened to him.

  27. I feel your pain. I was chemically castrated at age 12 and never knew what attraction and sexuality felt like except for the tiniest hints. I thought for a little while I was getting it back but I was wrong. I have sometimes questioned my sexual orientation because there is so little to work with and the SSRI was started at a young age. Now too because of all of the nerve damage it’s painful during and then for several days later. Also makes my bladder symptoms worse. I too have found myself getting angry watching love scenes on TV and this all is probably contributing to how disconnected I feel.

  28. And yes, people like to attribute my very limited access to my sexuality and attraction to psychological factors rather than the drug. I also think more attention needs to be brought to how SSRI’s wipe out attraction too–this is even more overlooked than the mechanics of sex.

    • Katie – It would seem to me that they wipe out absolutely EVERYTHING that creates a full human being, leaving only the skin and bones. That SSRIs do this is disgraceful – that companies and doctors DENY this is even worse.

      Linda – I bet we can guess what has happened to ‘ Kevin, the Man from UK’ as you call him – he probably said more than was comfortable for the eyes and ears of pharma companies. I hope he pops back up under another name in the not too distant future!

  29. Everyday for the last 9 or so years i have woken up to this nightmare of numb genitals and all the other sexual problems. It is like waking up into a horror film every single day. The amount of mental torment over the years i have had from this PSSD easily surpasses all the other problems i have had in life even if you added them up collectively. Someone should be doing a long prison sentance for what happened to me; but no, the people responsible have gotten rich at my great personal expense. The injustice of it makes me want to vomit. I can never ever forgive what happened.

    If i went out on a night out and got in a fight and injured someone somehow and it resulted in brain damage which meant they couldn’t feel their genitals or have any sexual feelings i would be getting a prison sentance. Its one rule for the rich and powerful and another for the common man. I still cant get my head around how this has been allowed to happen to me. Even if i was to recover tomorrow i still feel i would be psychologically permanently damaged from what has happened to me, and all the years lost etc. Almost on a weekly basis i question the point in continuing.

    Also that worm of a psychiatrist also yanked me off a high dose of benzodiazepines quite a few years back, without tapering me properly, and it left me sick for years, and that experience was almost as bad as the PSSD, but that’s another story.

    When i tried to complain about the PSSD and the fact that the psychiatrist took me off benzodiazepines much more quickly than is suggested by the BNF or the NICE guidelines (guidelines doctors are supposed to follow) i soon found out how doctors protect each other and hide behind their legal teams. I was the problem for daring to complain.

    They would answer my complaint with questions not even relevant to the complaint and try to stall the complaint process by repeatedly referring to my sexual problems happening when i was on the drug and deliberately not mentioning the post aspect, even though i specifically asked them to address the post aspect . They would also deliberately ignore some aspects of the complaint, and my SEAP complaints advocate would often have to prompt them many times before they would address them.

    I took my complaint all the way to the PHSO (parliamentary health service ombudsman) but found out that they were worse than the mental health trust. I had actual evidence that the mental health trust hadn’t followed the correct guidelines regarding benzodiazepine withdrawal, and i could categorically prove two people in my complaint had lied, but the ombudsman told me even if they had lied it was unlikely to change their overall outcome and in their final written response they said the mental health trust had done nothing wrong, even though there was overwhelming evidence to the contrary.

    The PHSO has been heavily criticized by the patients association for not being fit for purpose and ignoring evidence presented to them and being heavily biased in favor of the NHS. They come down in favor of the NHS in 96% of cases, so statistically you have a 4% chance of getting some form of justice and even then they usually just ask the trust to apologize, regardless of what damage has been done to you. One woman was offered sixty pounds in compensation by the PHSO, after the NHS accidentally killed her husband.

    Also the MHRA (drug regulator set up to make sure drugs are safe and protect us from the drug companies etc) is a sham. It is run by ex drug company employees, and quite a few people who work at the MHRA have shares in the drug companies. You can look this up if you don’t believe me. When i reported my PSSD to the MHRA, the person who i reported it to was sniggering with his colleague about my sexual problems. That still makes me angry to this day.

    When i pushed the MHRA about what they are doing about PSSD, they said there was insufficient evidence to prove it exists, even though they have had a lot of people reporting it. I have this in writing from the MHRA. As far as i am concerned the MHRA are almost as much of a problem as the drug companies in regards to trying to cover PSSD up.

    I feel completely betrayed and failed by society. Doctors and the drug companies are very well protected by the system, and they know this. Probably why they can afford to be so arrogant.

  30. Spruce, what you have written here about the long trail to find justice which was blocked for you at every turn, echoes exactly what we encountered after (well, actually before, even) the death of our son. I think ‘that worm of a psychiatrist’ describes our last one perfectly too, who took our son off Venlafaxine with no taper whatever, saying he hadn’t been on it long, but ignoring the fact that he’d been on Escilatopram for many months if not over a year, as well as Zopiclone for sleep and diazepam for good measure. Yours wasn’t a Head Trainer in NLP (when working Privately) whilst being employed in the NHS was he?

    I can’t be sure about the sexual dysfunction aspect as our son never discussed this with us, but I do know he didn’t feel he could marry and bring children into this world as he (a) blamed himself for his inexplicable low mood and loss of joy in anything and (b) thought a lot of people behaved in a pretty lousy way towards their fellow man, especially if they thought you looked ugly with acne.

    We, like you, did the magical mystery tour, from CEO of the Health & Care Trust (who brought in another psychiatrist to hold her hand in discussion on several occasions with us. This woman has the nickname of Dr Teflon in our area, so you can imagine how much satisfaction she gave, and she’d joined the Trust after our son’s death anyway so she’d never met him. We repeatedly asked to have Dr Worm there so we could ask him directly in what way he felt his stopping everything (including Home Treatment as well as drugs) stone dead, would be helpful. One wonders if he assumed simply twenty minutes of his hypnotic charisma (laugh out loud!) would jackknife our son out of feeling the OCD-like suicidal thoughts which plagued him till he died, and which he had endured for most of the previous eleven years since he first took RoAccutane, then Seroxat, and finally Escilatopram till another hospital psychiatrist who maybe saw our son twice at most, told him that he could find nothing wrong with him, but switched him to Venlafaxine anyway.

    Spruce, we did the CEO and the GMC, having taken meticulous care with our submission to them, first running it past a Professor of Psychiatry in another region who was appalled about the sudden cessation of Venlafaxine and says it is something he would never inflict on a patient as the effect could be so dangerous. We took out words he suggested removing, we kept it short and to the point and unemotional as advised. They didn’t even insist on seeing Dr Worm, they asked him nicely if he’d grace them with his prescence, and up until the last moment he implied he was going to slither along, but then decided no, he wouldn’t bother, thanks all the same. They went with his precise well doctored Notes about our son, dismissed the fact that he’d been up before them for another suicide some years back, and just said maybe his language had been less than helpful. By that they didn’t mean because was of some foreign descent, but in addition because he was bombastic, and we’d have said, totally out of order.

    So Spruce, we didn’t even bother with the Ombudsman. We have better fish to fry. Like you say, all these ‘bodies’ send you on a wild goose chase, keeping you busy writing reports whilst you get more and more exhausted and hopeless. Their agenda is (a) to admit no blame and (b) to make you go away.

    Self help books are very much needed, hence their popularity, and Publishing is going through better times right now. You write so well Spruce. Write a book, detail it all, and if a mainstream publisher won’t bite, self publish electronically and get it out on the Internet. (the Society of Authors offer good advice). Tell the world what’s going on. Use a pseudonym. Money won’t put right the injustice, no, but it helps to enable choice, treatment breakthroughs etc which might put right some of the damage – ? Stem cells etc – (carefully assessed first of course and under your explicit control by those you respect) and also the pen is definitely mightier than the sword when it comes to shaming those in power who are supposed to be accountable to the rest of us who pay them and keep them there….

    Go for the jugular. It’s quite satisfying, although I really wish we could turn back clocks and make it unnecessary.

  31. I completely understand your frustration Heather. I still cannot believe that injustice like this can take place in a developed country like the UK. I knew cover ups and corruption happened a lot in some other countries, but i never guessed that the kind of willfull turning of a blind eye to the truth and the very obvious damage that these drugs can do could happen in the UK. How wrong i was.

    What makes it worse in my case is the psychiatrist who i complained about got promoted to the most senoir role in the mental health team, shortly after being cleared of any wrong doing by the ombudsman. The chief executive and a lot of senoir staff at AWP would have known the truth that he had behaved badly and made some serious errors with prescribing and managing withdrawal, but then they go and promote him. It makes me want to lose faith in the human race.

    I am hoping i will eventually escape this PSSD nightmare one day. I want to be one of the ones to recover and be able to put this whole experience behind me. I have heard of people saying they have fully recovered from PSSD. There are quite a few people on the surviving antidepressants website who say they have fully recovered. This gives me some hope. But then i have also heard of people who are 18 years off SSRI’s and still have PSSD.

     At the moment my PSSD is quite bad (i have periods of small improvements, people call them “windows”). At the moment the small improvements have vanished, and i am going through what PSSD sufferers call a “wave”.

    When i say i have small improvements they are very mild, and nothing like my sex drive/function used to be before i took SSRI’s. Maybe my sexual desire/ function is like 2-5% of what it used to be in a “wave”, and maybe 10-15% of what it used to be in a “window”, with 100% being a normal libido/ function that i had before taking an SSRI.

    Still the small improvements give me a glimmer of hope that i may one day recover. I dont want to be here at 42 in ten years time, in exactly the same position i am in now. I dont think i could go the rest of my life not having any sexual feelings and having numb genitals. I want so badly to recover and be the person i was before i took citalopram. Everyday i regret taking citalopram.

    I just want a normal life again.

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