Post-SSRI Sexual Dysfunction: Getting a Diagnosis

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November 21, 2017 | 29 Comments

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  1. As you point out there are some who have had a positive experience with health professionals – but too many don’t….could there be a list of those doctors who are supportive and especially who have filled out the report ,so others may request a referral? They would ideally of course be willing to share their names openly but if not privately with Rxisk? Bearing in mind the word would get around subsequently they might have reservations but surely they would have a right to make a clinical judgement? Otherwise people are likely to be wasting even more time often amounting to years chasing around for help -becoming more depressed. By which time a diagnosis will be even more muddled by an over riding diagnosis of depression and neglect the issue of adverse drug effects.
    Notice there is no real interest from Italy – have e mailed a few random psychiatrists and mental health units .It’s a shame as Italy used to be in the forefront of empowering clients but I can’t find any small size independent ‘user groups’ .

    • Dear Susanne — Funny you should mention it … I was looking through the medical literature a couple of days ago, and lo and behold there were two papers by a research group in Italy! The lead author is at the University of Udine: Sabina Cauci, Ph.D., sabina.cauci@uniudine.it
      The others are various places in Udine and Trieste.

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5302381/

      https://www.ncbi.nlm.nih.gov/pubmed/24855036

      They are trying to work out the genetic differences that might make certain people more vulnerable to PSSD when they take Finasteride. So far the answer seems to be that it’s complicated. They have some challenges separating out the genetic variants for baldness itself from the genetic variants for trouble on Finasteride.

      Even if their quest succeeds, I don’t know how relevant it’ll prove to be for people who already have a PSSD-type syndrome. But at least they recognize that the problem exists and is not psychological! Might be interesting to drop them a note.

      I do think we’ll probably have more success with doctors in other areas of medicine, than with psychiatrists. The shrinks, alas, are the true believers–they are getting pretty close to faith-based medicine.

      • Serendipidy Johanna.. thanks v much…I am VERY cynical about the psych profession too but as we know there are some decent ones who may rxisk bucking the hierachies.so will drop them a note as you suggest and thanks for putting the links which help a lot – (must find out how to do that..) re faith based psychiatry -came across a ref to one who was described as ‘the high priestess of psychiatry’! Beliefs are so hard to budge especially when the high priests/esses are in charge

      • The sparking of the ‘Italian Connection’ .. Susanne and Johanna .. could it be ‘bellissimo’ ..

        “This kind of study is not cheap: it needs, at least, 50000 € for a basic investigation (the exact cost can be determined only after the elaboration of the study). Most of them (40000 €) will be donated by Coraggio (please everyone be eternally grateful to this man), another part will be funded by the university of Milan.”

        The research team plan to start the study in november 2017 and publish the results in first months of 2019.

        “A very important researcher from the University of Milan, that does research in the field of Neuroendocrinology and has conducted some studies on Post Finasteride Syndrome, is going to start the first study on mice in order to understaind what kind of brain alterations are causing PSSD. Doing this study is of paramount importance for some reasons:

        -Undestaind the etiology (ie what cause) of PSSD will allows to locate the target for a cure

        -Showing that there is some kind of persistent damage induced by SSRI\SNRIs in our brain is the culprit to persuade everyone that we are not a group of paranoid and depressed people.

        -A methodical and well done study, conducted by an important research team from an important university, will bring the interest of other researchers and the scientific world on this issue, that will no longer be ignored. This will lead (hopefully) to the start of new studies.”

        https://www.reddit.com/r/PSSD/comments/61r4yo/new_pssd_study_university_of_milan/

        Clinical Study of Post-Finasteride Syndrome Launched
        at University of Milano-Bicocca and University of Milano

        Research Aims to Determine Why PFS Patients Develop Neurological and Psychological Dysfunction

        SOMERSET, N.J., Dec. 9, 2014 – The Post-Finasteride Syndrome Foundation today announced the funding of a third clinical study on post-finasteride syndrome (PFS), this one a collaboration between the University of Milano-Bicocca and the University of Milano, both in Italy.

        http://www.pfsfoundation.org/news/2061/

        viva l’Italia!

  2. I cant wait for the day PSSD is officially acknowledged. I have had 10 years of being told it doesn’t exist by doctors. It will be such a relief when i am at least believed. It will make living with the condition a bit easier and i wont feel as isolated.

    We must not stop until this horror gets fully acknowledged and accepted by medicine. It would be great if eventually the majority of doctors and pharmacists will have heard about it.

    I feel we are definitely moving in the right direction RE getting the word out there about PSSD.

  3. Getting acknowledgement from a doctor about PSSD is like trying to draw blood from a stone. I have had PSSD since 2008, and not a single healthcare worker I have seen has heard of it, and they insist on it being a symptom of depression. I remember one time prior to an appointment, I emailed a private consultant psychiatrist in Harley Street explaining to him in detail about PSSD and the condition, mentioned Dr Healy and provided him links to PSSD articles on the Rxisk website. When I came to see him, he said that my sexual dysfunction is a symptom of depression. I didn’t even answer back. My impression was that he didn’t bother reading any of the articles. To feel frustrated and angry is an understatement.

  4. Is there any update regarding the RXISK prize? Do you think there will be a cure soon? Im in my mid 20s and suffering from no libido whatsever since suddenly quitting all meds at age 22. I maybe had mild arousal a handful of times at most, but nothing much at all. Im so sick of this. Is it forever? I hope not. Is it a brain thing or a body thing? I need some hope because its all doom and gloom online regarding pssd (save the few positive recovety stories, which I am grateful for). Does it get better in time? So fed up

    • We will find an answer. We need you and everyone else to spread the word outside the online forums – to people who have never heard of the condition. Hopefully in the new year we will have some proposals about how best to move forward.

      D

      • David, you very confidently say that ‘we will find an answer’ to these problems, does that mean that you have seen progress towards the answer since September, when the RxISK Prize was introduced? The donations are increasing week by week in quite a remarkable way – but, however we look at it, there is a way to go yet. Do you feel that there is work already going on which has accelerated now there is a prize in view – would we be informed when a suggestion is in trial by ‘the adjudicators’? I just feel that the more info we have at our fingertips, as we try to persuade an interest in the problem and the need for donations, the more successful we are likely to be.
        To have raised over 33 000 dollars in under 3 months is amazing – I feel we have to take our efforts to the next level if we are to match this in the next three months. We know that we can do it – not so much for ourselves but for those who are waiting ( if I were in their shoes, it would be waiting rather impatiently!) for this breakthrough. Does the RxISK team have any ideas of how we could increase the interest of the lucky ones who, as yet, are doing just fine on these drugs, so that they become interested in the campaign? The number of prescriptions is increasing, we are told, so there must be a sea of possible donators out there if only we could get them to believe the truth of the horrific stories linked to the very prescriptions that they so willingly praise – and of which they will allow no criticism at present.

        • Mary

          Am pretty confident. Its the descriptions of people who have the problem that points to a way forward plus getting pointers from people doing their own research. The upshot is we have made contact with several research groups in N America and Europe. Nothing is moving quite as quickly as I would like but the bits of the jigsaw make a reassuring fit at the moment.

          David

          • This is good.
            Am still wondering if ANYONE has found a way of getting acceptance from the ‘I’m alright Jack’ brigade of AD users for this campaign? Or is it just a Welsh thing that you get a mouthful for daring to suggest that ADs are anything except fantastic? I haven’t even been able to have a decent discussion in order to understand exactly where they are coming from – it’s just a curt ‘I don’t listen to anything anti-medication’ usually, which immediately ends the conversation. However, as has been said, just the fact that we share as much as we are able gets the message out further I suppose – and, who knows, maybe our greatest critic goes home and searches online to see what all the fuss is about. Many a success may well come out of an apparent refusal to engage I guess.

    • I hate this separation… “PSSD” and “Withdrawal”, it is very clear that they both have the same cause… this is why I think that PSSD is a bad name.

  5. In line with Mary’s idea for sharing cards, I created business sized cards that have the Rxisk logo and website on the back, and the Rxisk footer on the front with the words:

    HOPE FOR A CURE Can you help?

    We need your support to find a cure for one of the most debilitating side effects of modern medical treatments — the persistent loss of sexual functioning after stopping antidepressants, finasteride (Propecia) or isotretinoin (Accutane).
    For more information see RxISK.org

    Since I don’t have office equipment (or the skills) I made them online and picked them up at the store the next day and paid 20 bucks for 500. Every day I find places in the community to put them, bulletin boards, hospital waiting areas, shop windows where they allow things to be posted. I just leave a couple laying around here and there. It’s short and sweet, should spark interest, and may help connect other PSSD sufferers with RxISK.

    Along the lines of the candlelight vigil we had earlier this month, I’m also drafting a letter to send to churches. I’m still working on the framing to encourage parishes to make this a cause of their own, but even if they don’t get involved in the way we would like, they are still hearing about the problem.

    It feels kind of empowering to do this. The problem is already out there, likely everywhere. We just need to connect people with information and see what happens. I’d be happy to share what I have with anyone here.

    • Laurie

      This is fabulous. Its great to hear from everyone who makes contact but everything feels like it pays off when some people do the kinds of things behind the scenes that you are doing. One of those behind the scenes here has recently emailed over a hundred urologists to see if we can raise interest there. Another emailed all 500 therapists linked to COSRT – the main sex and relationship therapist organization. The response from all these people can be pretty minimal but at some point we’ll reach a tipping point in terms of general awareness

      David

    • Great work Laurie! Do you find permission easily granted for you to leave your cards in various places? It is difficult, here, to be allowed to leave cards etc. in public places unless you are doing so as part of a registered charity. The result of this, of course, is that I’m only able to share with people I know – but some of them take a few cards and share those slightly further afield which helps I suppose. Am intending to put a Rxisk info. card and a Prize one in with everybody’s Christmas card this year – at least the message will be delivered, even if not at the best time for the chance of donations.

      • Mary, it just depends. There are plenty of public bulletin boards and businesses that have a spot for cards. In the hospitals I just plant a couple in waiting areas with the magazines. Even if housekeeping picks them up, I figure at least somebody is seeing them. I like your Christmas idea.

        • Thank you for a much-needed dose of positivity Laurie – of course you’re right that even if your cards don’t go directly to the ones we’d like to catch, at least SOMEONE will have seen them and who knows where that may lead.
          I’ve been thinking hard today about ways to change the attitude of AD users in general. I haven’t had a breakthrough unfortunately, but have decided that, as well as the cards in with Christmas cards I’m also going to include your message ‘Hope for a cure’ etc. in there with a request to share with all Facebook followers, put on Twitter or, if not using social media, to make 5 copies and hand out to family, friends or neighbours. That should spread things well away from our immediate area and give me the satisfaction of doing a little bit more for the cause!

  6. Hi Mary – Like you say you never know when the message might hit home or ring a bell when they need the information. Nobody thinks it could happen to them. I used to do the same as Laurie and put them all over the place, waiting rooms, community centres, cafes, even on buses and trains, without permission. I wouldn’t have the strength to keep trying to engage with people as negative as those you come across so leaflets avoid that depressing experience. I bet some of them have tucked your message away. Good luck with the christmas messages.

    • I think I shall start to accidentally drop a few cards here and there – and just hope that the dreaded Enforcers are not around at the time! I’m also thinking that, when speaking face to face, I’m going to start with the ‘medically unexplained symptoms’ diagnosis which may be more acceptable since no mention of mental health – but will eventually lead to RxISK for answers anyway!
      Have just chatted with someone on Twitter who sounds pretty desperate and made two suggestions – one being looking up RxISK.org and its forum. I hope he appears on here soon.

  7. Since coming off benzodiazepines in May 2015, i have been slowly rebuilding my life.

    Every area of my life has slowly but surely been improving, and i have made a lot of progress in a lot of different areas in my life.

    Everything has improved apart from PSSD.

    Despite eating well, exercising regularly, and generally living as well as i can, i have only seen very small improvements in my PSSD.

    It is the only thing that just refuses to budge. I had some benzodiazepine withdrawal symptoms that took 18 months to completely go after jumping off diazepam in 2015 after doing a long taper over about 4 years. All of those withdrawal symptoms from the benzodiazepines have gone now.

    Everything has improved apart from PSSD, and PSSD was my most distressing symptom out of any withdrawal symptoms/ side effects i have had from any of the psychiatric drugs. It just wont go.

    It is a genuine bane on my existence. If it wasn’t for the PSSD, i feel i could be living a good and happy life in the next few years, from all the progress i have made in other areas of my life. But with no sexual feelings and numb genitals, i cannot feel happy.

    People say there is more to life than sex, and there is truth to this, but without any sexual feelings, especially as a young man, i just cant feel happy. I have tried, and i cant.

    I could have 10 million pounds in the bank, and everything else going well in my life, but without being able to enjoy sex in any way, shape, or form, i might as well have nothing.

    In some ways i would trade all the money in the world just to have my sex drive back, and to be like i was before i ever took citalopram. I really mean it when i say this!

    I feel so hollow, and empty inside without my sexuality, and nothing in the world can compensate for this.

    • Spruce, it’s only been 2 years and you’re seeing small improvements, which is a good sign.
      I’ve read recovery stories in which people have overcome pssd after 7 years, sometimes more.
      Nothing is impossible. There is hope.

      The human body and mind are so much stronger than some shitty meds. We will all overcome this, no matter how long we have had it.
      Thank you Dr Healy.

    • Yea! I was hoping others might want to do this. I wish I had them printable on PDF or something but I posted an example pic on my blog with a few details.

      http://www.laurieoakley.com/the-blog/rxisk-cards-hope-for-a-cure

      Mary, I did encounter a dreaded Enforcer, lol…he spied me as I dropped one on a table at the hospital and he walked straight for it as I was leaving. So now he’s got the information and it’s up to him what he will do with it. But it’s in his mind. Nothing wasted.

      • Oh Laurie – I’m picturing you scuttling away when you spotted the Enforcer! Seems that yours are not quite as full of their ‘Jobsworth’ as ours are. Here, they slap you with an on the spot fine as well as confiscate your wares!
        Your cards are fabulous – well worth having them professionally done I’d say. Am going to look into that over here – but I’ll need to have a Welsh version added too of course. Have enough negative responses without having the Language Brigade after me too! Keep meaning to get a car sticker version done. Must DO rather than just SAY I guess – when time allows.

  8. I just did an interview with Elaine Riddick, surgical sterilization victim of the North Carolina Eugenics program that took place in the USA. We talk about my Marathon campaign to support the rxisk prize called Run Against Castration as well as PSSD and her experiences and campaigning. Including her experience of being pushed and taking mental health drugs.

    Please listen, support and share

    https://youtu.be/donucvt4OO0

    There is also an audio mp3 version on my blog available to download distribute and share as well. But help move the youtube exposure along…

  9. I understand what you are saying Lauren, but i have been off SSRI’s for over 8 years now, and i am pretty sure it was the SSRI’s not the benzos that have caused most of the sexual problems; especially the numb genitals.

    I continue to hope that one day the PSSD will resolve, but somedays it all feels hopeless.

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