What’s Sex Got to Do with It

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January 23, 2020 | 28 Comments

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  1. Thank you for the continuous recognition of pssd. Speaking of I have pssd and have had it for about 3 years now. And have recently experienced nerve pain in the testicles that occurs when stressed or nervous. Is recognized when it comes to pssd ? Will typical prescription nerve pain medication help the issue ?
    Thank you

    • I have PSSD and have needling type nerve pains in my genitals and testicles, in a sporadic, but almost daily basis. Although the pain is usually quite mild, occasionally i would describe it as moderately painful.

      • Thank you for the reply spruce,
        regarding the pain have you tried nerve medications for relief ? Also is nerve pain not common when it comes to pssd ? Symptoms of nerve pain do not show up On any pssd symptom page.

        • Hi John. No i have never tried any medication to treat the nerve pains.

          The nerve pains feel like an indication that my body is trying to heal itself from the PSSD, and reverse whatever changes the PSSD has caused, so i am reluctant to try and interfere with this process in any way by treating it with medication.

          The needling nerve pains seem to be getting a bit stronger and more frequent as time goes by, and they seem to be spreading to other areas too, but in a slightly different form, where once they were isolated to my penis and testicle area.

          In the last few months they have been happening also in my right quad on my right leg, on the left side of my neck, and also the upper left side of my back. The nerve pains in the areas i just mentioned feel more like a tingling sensation that passes in a wave like procession over an area of skin, and aren’t really painful. They feel slightly different from the nerve pains i get in my genital area which feel like needling type nerve pains that go in an almost snake or worm like fashion, and can be mildly to moderately painful.

          I have also been getting some quite sharp occasional nerve pains in the area just above my genitals up towards my belly button. These also have only seemed to have started in the last few months.

          I strongly believe these nerve pains/ tingling are related to the PSSD and not something else.

          I have heard of others with PSSD having nerve pains too.

          • Thanks again spruce, fertility is also one thing I can’t find an answer too when it comes to pssd, have you tried starting a family with pssd or can you ? With all of this pain in the testicles, fertility is one thing I’m also concerned about

          • I also have had bouts of nerve pain in various areas of my body since discontinuation of the SSRI I was on back in 2012. I thought I was the only one going through this. It has been hard to convince doctors all of my symptoms were caused by the SSRI I was on.

  2. Thank you for this brilliant start to a new decade.

    Delighted to see such an important publication in the Journal of The Royal Society of Medicine.

    I have read and re-read this afternoon.

    “There is a great need to recognise these treatment-related enduring sexual dysfunctions and pinpoint how they arise and might be treated”.

    Yes indeed.

    Should be compulsory bedtime-reading for all prescribers.

  3. I have just today found out that another person with PSSD has commited suicide. She died on 26/10/2019, at the age of 17. She went by the name of Potions on the facebook group, and marrybanana on the PSSD forum, but her real name was Margaret.

    I chatted to her online on the PSSD facebook group for about 2 years. She would often talk about suicide, and how her doctors refused to believe her sexual problems had been caused by the SSRI she had been given, stating her psychiatrist actually shouted at her “in all my years of being a psychiatrist i have never heard of anything like it”.

    Another member of the PSSD facebook group has today told me she is going to take her life soon too, as she feels completely hopeless about her recovery, her doctors wont believe her, and even her own brothers have been taunting her about her sexual dysfunction. I am quite close to this person and she is one of only a few people who understands what has happened to me.

    I am having thoughts of suicide again myself. I really dont know how much longer i can endure all this. In November of this year it will be 13 years i will have had PSSD with only small improvements to show.

    None of my past doctors who prescribed me the Citalopram want to know. I have told my ex psychiatrist repeatedly about the damage that has been done to me, but he doesn’t want to know. I wrote a letter to my ex GP describing what has happened to me but he didn’t bother to reply to my letter.

    I am really struggling mentally. This condition is so cruel and has taken 3 people i used to regularly chat to who have all taken their lives in the last 2 years.

    Every day i am struggling. I cant believe this has happened to me.

    • Very sad Spruce The ‘data’ the regulators collect should not just include the stats but the life experiences that go with them – hopefully you will keep telling the truth of how it is – with best wishes
      Take care

    • A sad time indeed when news of another suicide is tallied among the others I’ve witnessed.

      It’s been about two years for myself, with absolutely no recovery in sight. I have everything I need to “get on with it” save for the courage to do so.

      Currently I’m cleaning out my room, giving away what I don’t need and thinking of how to divide up what’s left after I’m gone. I’d at least want a clean and empty space left behind, if only to symolise the utter void that persists deep within my heart.

      Provided I do not cremate slowly in Hell, I’d like to meet some of those who’ve self-terminated. I’d tell them about how strong they were and bid them an eternity of peaceful sleep.

      I think you’re very strong too, Spruce. As much as you may think eking out such an existence is the antithesis of power, the fact you’ve gone on for so long is remarkable.

      • Thanks Mikhail.

        Try to keep going though, and don’t give up, although i know how hard it is.

        There must be a way out of this nightmare somehow.

  4. “But in some unpublished phase 1 trials, over 50% of healthy volunteers had severe sexual dysfunction that in some cases lasted after treatment stopped.”
    I would like to know the source.

    • The source is me. As an expert witness i get to see things you can’t and no other doctor can. This is part of the problem – these trials in volunteers – so no diseases on confidentiality issues involved – should be in the public domain but aren’t

      David Healy

      • Am I right in thinking that there are other ‘expert witnesses’ who will have also seen this evidence? What is their view of this secrecy which is such a frustrating issue?
        I have no doubt that you will have tried every possible avenue to correct this secrecy. Is there a possibility that all sufferers – anonymously if necessary – could have their suffering exposed through Samizdat Health, in printable form, so that the rest of us could at least share with a wider audience? Spruce, for example, has so much knowledge and ‘insider information’ which needs to get out to the clear light of day.

  5. With ref to Isotetrinoin again
    An expert group has been reconvened to review recent safety data relating to the acne drug isotretinoid and evaluate the risk of sexual and psychiatric adverse effects, including suicide reactions. In 2019 12 deaths were recorded among people to whom isotretinoin had been prescribed, 10 by suicide,
    In guidelines published by Alliance Pharmaceuticals – ‘Advice For Men -‘ the levels of oral retinoid aRE/ too low to harm their partner’s unborn baby.’ – So how many studies are carried out to see if there are problems down the line?
    ‘The available data SUGGESTS that the level of maternal exposure from semen is not of sufficient magnitude to be associated with tetrogenic effects’. – Again how would they know unless there is continuous monitoring?
    Men should not donate blood during or after taking the drug for 4 mths . A drug as toxic as this is allowed to be prescribed for pubertal youngsters but not before – all adolescents don’t develop at the same rate but also they will not necessarily be knowledgeable about the sexual changes which it would be expected they will be experiencing – and are not .so that the first signs of harm may not be realised until they become older and forming relationships . Adolescents don’t all have parents or others they would discuss sexual issue with Even if they suspect something is wrong they would likely not talk about it and be fobbed off if they did My point being there can’t be any reliable information about the harms caused down the line by Isotetrinoin given to children unless they are reporting the link andsomebody recognises it There must be untold numbers just putting up with it.

    • There are indeed untold numbers just putting up with it, as we know only too well to our cost. They are dying in droves. And what the hell can we do? Seven long years of active protest, and before us, back to 1982, others trying just as hard.
      We need a NEW treatment to bump this thing off everyone’s radar. And we have a plan….more ideas on how, to come.

  6. Last week, Frankie ( From the group ‘The Saturdays’ ) who is a well known extremely attractive Celebrity, married to a well known footballer, spoke out about her struggles with her MH and in particular her struggles with depression. She had been on quote’ 10 different anti-depressants’ which according to her had caused sexual dysfunction, which in turn had put pressure on her husband ‘ I tried to reassure him it was the medication not me’.
    She told her Daily Mail audience that she expected to be on anti-depressants for life.
    So does that mean that sexual dysfunction is an acceptable side affect of ‘depression pills’ Frankie is a young woman

    Its one thing for the mainstream media to suggest sexual dysfunction is a side effect of ‘Depression’ quite another to suggest one should put up with this if you decide to take medications which cause this…….let alone the fact that Frankie and others could find sexual dysfunction to be permanent long after their depression passes…….

    Professor Healy I wonder how willing ‘Celebrities’ would be to talk about sexual dysfunction on SSRIs…….They all love to talk about their MH…their experiences with anxiety, breakdown,depression………Even Royalty say loud and proud…’Its good to talk’……..

    • I wonder if anyone suggested to her that doing away with all ADs could be her way forward?
      I agree that celebrities love to talk about their MH – seems to be the ‘in thing’ at the moment, mainly because of Royalty’s opening up about it no doubt. There was a time, not that long ago, when many celebs spoke of “being brought up in poverty”, then came “abuse” – now we’re on MH, where next I wonder?
      Wouldn’t it be great if it was PSSD and akathisia and that they were willing to pour a little of their cash into the Rxisk Prize Fund.
      As for ‘it’s good to talk’ – of course it’s good but where is there for people to turn to when that is their need? They turn to friends/ family but what are they likely to suggest if things are really bad ? “You need to speak to someone who can help you beyond what I can do”? Who? Where? – community mental health teams are more or less gone in our area……..and yet, offering a group as ‘a place to talk’ falls on deaf ears!

  7. It’s not easy to put our face on it. I am shy and I live in a small town, my parents, my acquaintances…I think about this.
    And everyone will have a similar justification: family, friends, job.
    Let us strive to do everything possible and to bring out a little courage in the face of something so neglected, terrible and criminal that has hit us.
    I’d be curious to know the ideas of what could be done once we put our face. Each of us could have their own way to do it.

  8. Mad in America SCIENCE, PSYCHIATRY AND SOCIAL JUSTICE
    Wendy Dolin – Making Akathisia a Household Word
    James MooreBy James MooreJanuary 25, 2020
    This week on MIA Radio, we interview Wendy Dolin founder of the MISSD foundation. MISSD stands for Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin.

  9. Sexual dysfunction is obviously massively important but I have to be honest here and say that people in the community feel we’d like much more to be done in highlighting the anhedonia and emotional numbing that arises from these meds. Which dare I say,many deem far more troubling/torturous than genital numbing or dysfunction. Everyone I speak to,in fact.
    It’s a major reason why people want to kill themselves. I would argue even more so than the sexual issues.

    Sadly we lost a forum/discord member called AnhedonicApe a couple of weeks ago. He was bedbound due to anhedonia, much like myself. I know that he desperately wanted more recognition for the anhedonia side of things.
    A lot of us just can’t function at all anymore and feel as if we are already dead or in a coma; it impacts everything.
    Because of the severity,many in the community feel the condition should be renamed to better reflect and accommodate hedonic and emotional blunting. As not to disclude people who may only have anhedonia or even both conditions.
    Being unable to feel love, pleasure or basic human emotion is a burden none should bear. But all the media want to talk about is the sexual side of things?
    I too have been wrongly gaslighted by Psychiatrists and accused of being depreseed/delusional. Even though rat studies and countless anecdotes support my argument. I have lost half my twenties to this condition and it’s traumatic.

    However thank you for your work in trying to bring recognition to our suffering Dr Healy.

    • This issue of emotional blunting is one we will pick up on soon. There is no question but that most people with PSSD have emotional blunting and depersonalisation and anhedonia. The trouble is focusing on these symptoms is not a good place to look for an answer. Many drugs can or do cause emotional blunting, depersonalisation and anhedonia but don’t cause PSSD. And its clear there are a number of other Enduring Sexual Dysfunctions that do not cause neither emotional nor genital numbering.

      From a research point of view, the need is to find a distinctive feature to the complex of things that happens in this condition – one that a research group can focus in on – and then to ensure that everyone the research project recruits has this feature. Genital numbing seems the best bet from this point of view. Its a very clear cut thing that can be put in front of researchers and regulators and companies as a challenge – emotional numbing is something that leaves them too much wiggle room and they can say but this occurs in other conditions and after other drugs, so how do we know its linked to SSRIs.

      So the focus here on genital numbing is not one that should be read as saying the almost invariable emotional numbing isn’t just as important – its a matter of tactics.

      David

  10. Please forgive my naiveity in putting down some thoughts. I am not a scientist, biologist etc like my son was. But I’ve been trying to find the layman’s common factor between all these effects as listed above. Is it that various types of steroidal effects are being triggered in the body by all these difference medications? I know that persistent genital arousal can occur on Prednisolone. If one looks on Wikipedia at all the complexities of steroids, and how they are expelled from the body via the enzymes in the liver, or are supposed to be, and all the different hormones they affect, do we need something which can reverse the steroidal effect. Are steroids much more dangerous and far reaching than we realise? I know I for one cannot tolerate them. One short 11 day course in 1994 pitched me into mental and physical side effects that it took me almost a year to recover from, mostly using B vitamins to balance out the gut flora etc. It was a living hell. I was totally unprepared for it. The drug had simply been given to me for an allergy to grass pollen causing wheezing. Are isotretinoin and antidepressants behaving like steroids, and to remove the damage like PSSD and PRSD, would an antidote to steroids work? And if so, is there such a thing? Please excuse me if this sounds like nonsense. I am just feeling my way and trying to learn. Are some of us very sensitive to steroidal effects from drugs, whereas others can cope with them?

  11. David The Rxisk Prize seems to be stuck – it’s been 62,900 dollars for many months. Are there any other options for research being researched?

    • Suzanne

      Yes it is stuck but we are chasing some further options re fund-raising and also have a few people chasing possible treatments and others chasing political angles. So its not just being let sit there – we are actively keeping on eye on what best to do

      D

      • I wonder if a regular (maybe quarterly) comment of news regarding what may be in the pipeline would help? Directing people to the Prize Fund page is unhelpful when there’s nothing new to attract their attention. A “breaking news” type of slot running at the top perhaps? Or, maybe, a few words outlining in which ways volunteers have already raised money?

  12. Re: Social media companies should be forced to share data for harms and benefits research, say psychiatrists
    Re: Social media companies should be forced to share data for harms and benefits research, say psychiatrists Elisabeth Mahase. 368:doi 10.1136/bmj.m209
    Dear Editor,
    Psychiatrists seem more concerned about hidden harms from digital social networks than about hidden harms of depression pills from most pharmaceutical companies.
    They continue to tolerate sharp increases in prescriptions for antidepressants, despite refusal of companies to disclose all research data.
    30 January 2020
    Stavros Saripanidis
    Consultant in Obstetrics and Gynaecology

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