This post is by Spruce who has been a regular contributor to these columns. It follows from his comments on The Invisible Doctor and it adds to that post which has had a lot of comments since. Humans seem to have a tendency to caste systems but most people would be surprised to think you could find them in modern medicine.
I had been thinking about getting a copy of my medical records for a while, to see if any of the negative experiences I had about not being believed about PSSD was recorded in them. Recently I got them.
While I am aware from my many experiences with doctors over the last 15 years that most of them don’t believe PSSD exists, it has never ceased to surprise me, the lengths the medical profession will go, to deny what has happened to anyone who makes an effort to point out the long-term health problems prescription drugs can cause.
My records make it clear that not only was I repeatedly disbelieved about my PSSD symptoms but my PSSD were almost always attributed to other causes. My records show that even when a professional is aware that PSSD exists, they will still go to great lengths to make you out to be the problem, and not the drug.
Below are some excerpts from my records.
Record 1
“It is quite possible that Spruce’s sexual dysfunction is multifactorial in nature, and may partly be due to his benzodiazepine use, and, indeed, the mental health conditions from which he suffers… Nonetheless, he is clearly greatly troubled by his sexual dysfunction and I am sure it has a strong psychosexual component”
This GP was sceptical PSSD existed and suggested that my sexual problems were psychological and caused by my underlying mental health issues.
Record 2
“I have tried to counsel him that it is exceptionally unlikely that Citalopram would have this long lasting effect on his libido, and its likely this is related to his underlying mental health issues”
This GP repeatedly refused to believe PSSD was real, and that citalopram causes it. He told me my ongoing problems were likely caused by my mental health issues. He told me one time, in exasperation, that I would “get better, when I decided to get better”.
Record 3
“We discussed how sexual problems can be caused by anxiety, and low self-esteem”.
In 2009, feeling suicidal because of PSSD, I saw an out of hours doctor. She didn’t believe me about PSSD and long-term sexual problems could be caused by past use of an SSRI. She suggested my symptoms were likely caused by anxiety and low self-esteem.
Record 4
“It sounds like he has got complex psychological problems and I agree with you that his sexual symptoms are likely to be related to this… He also mentioned about Post SSRI sexual dysfunction, which once again would be best answered by a psychosexual therapist”
This record was a letter from a urologist to my GP, who seemed to believe my PSSD symptoms came from my “complex psychological problems”.
What upset me the most was not the doctors who didn’t believe me, or thought my symptoms were psychological, although being repeatedly disbelieved, is obviously frustrating and unhelpful. The worst was the way the mental health team responded after I made an official complaint about my PSSD.
One doctor, my GP at the time, was also an ex-psychiatrist. I explained to him about my zero libido, pleasureless orgasms, numb genitals, and numb emotions, after coming off Citalopram and how none of these symptoms had resolved, despite being off Citalopram for a number of years.
He told me he had a number of ex patients who had experienced something similar with sexual function and desire taking many years to return after coming off an SSRI. He was aware of the condition, and he believed me, and even actually said to me “it was the Citalopram”, in one of our consultations.
He told me there was nothing he could do to help the situation, that he didn’t know how long it would take for me to recover, but that it could take “years”. He was quite open and matter of fact about it.
I felt relieved I had finally found a doctor who was aware of the condition, and who believed me.
It was around this time that I made my official complaint because the mental health team, was still refusing to listen, or believe me, about my PSSD symptoms.
I now know this GP was communicating with the mental health team about me. After making the complaint, almost every time I would try and bring up about PSSD in our consultations, he would try and change the subject; and his body language, tone of voice, and general demeanor towards me, became unfriendly.
He once rudely reminded me that my 10 minutes was almost up, when I persisted in trying to talk about PSSD.
Another time when I handed him a reply from the MHRA I had received, about how they were looking into persisting sexual dysfunction after coming off SSRIs, he took the piece of paper from me, but handed it back within a second, not even looking at it. Then he sat there glaring at me and tried to change the subject.
Once when I went to a consultation, he angrily opened the door to his room, glared at me, and then said in a raised voice “come on then”, as an indication for me to enter the room. It became very apparent he wasn’t very happy with me.
I remember once telling this GP about the effect PSSD was having on my life. He just looked at me, angry with me for mentioning it, and didn’t comment. There seemed to be no compassion, or understanding.
Despite this, I didn’t give up, and I insisted on talking about my PSSD, at each of our consultations; as he was the only doctor so far to believe me about my PSSD.
It was having a terrible effect on my life. A relationship came to an end because of it and I was often struggling with suicidal feelings and thoughts, and sleepless nights. It was clear people could have this for 10-15 years off SSRI, with little or no improvement in sexual function, or desire. I felt it was an important topic to talk about.
I asked my GP to talk to my then psychiatrist about my PSSD, seeing that he had previous experience of patients with PSSD, when he used to work as a psychiatrist. He seemed uncomfortable when I asked him this, visibly shifting in his seat, and mentioned if he was approached by my psychiatrist, he could mention it. It was clear he was not going to go out of his way to talk to him or help me in any way.
One record from this ex-GP shows him communicating with a drug misuse specialist about my benzodiazepine taper.
Record 5
“I also enclose recent copies of letters from the community mental health team, which he is currently involved in quite an acrimonious complaint on the basis that he was started on SSRI by Dr X (my ex-psychiatrist), which has had long lasting effect on his sex life, which he feels is directly attributable to the medication, and that Dr (X) did not warn him about”.
“I understand from (Y) the manager of the mental health team, that Dr (Z a different psychiatrist) plans to see Spruce, and their feeling is that he has a narcistic personality disorder”
“He does extensive research on the internet until he finds an answer somewhere that corresponds with his own view”
“As a specialist in drug misuse, we would really value your opinion on how best to proceed with this young man”
The first oddity is why my GP felt he needed to tell the drug misuse specialist about my complaint against the mental health team, because of my PSSD.
Record 6
“drug misuse”:
A short while before making my PSSD complaint, I decided to try and come off benzodiazepines.
My psychiatrist advised me to come off over a 6-week period. I remember feeling this sounded a bit too fast, as I had heard of some people struggling with benzodiazepine withdrawal. I planned to try to come off the 3.5 mg lorazepam I was on, over about 10-12 weeks, to give myself more time.
It was unpleasant, but bearable, until I got down to 1 mg of lorazepam. Then I was told to convert to 10 mg of diazepam (the equivalent lorazepam dose), as it has a longer half-life and is easier to reduce into smaller cuts.
At this point, withdrawal turned nasty. I started suffering from anxiety, insomnia, muscle tightness, hallucinations, loss of appetite – I lost two stone in weight – balance problems and other severe symptoms.
I became almost non-functional, lost friendships, had to give up voluntary work I was doing, and became very isolated and depressed. My mother had to help me get to doctor’s appointments, and with food shopping, as I felt so unwell.
This went for 6 months with no improvement. I couldn’t handle it so I tried to slowly increase my diazepam doses to see if the withdrawal became bearable but even doing this did not improve things.
I explained why I was doing this to my GP, but he saw this as evidence of me abusing medication, even though I had only increased my diazepam by a fraction and certainly not an amount that could give you a high. He referred me to a drug abuse clinic.
I got in touch with Battle against Tranquilizers (now called ‘Post Script’), who advised me that the a 6 week withdrawal my ex psychiatrist had suggested, was much too fast for people who had been on benzodiazepines long term. That it can take over a year, sometimes a number of years, to withdraw safely off the dose I was on.
I felt angry that I had not been warned about how difficult withdrawal could be when I was first put on them, and that I had been given such poor advice on how to withdraw.
I found a GP who was willing to re instate me back on the original dose of lorazepam, which was 3.5 mg.
All of my withdrawal symptoms completely went away, and I was able to function again, and I slowly went about rebuilding the life I had lost over the last 6 months.
With the help of Battle against Tranquilizers I slowly converted over to an equivalent dose of diazepam (35mg), and started a long taper, down to zero. This took 4 years. I came off completely in May 2015, with almost zero withdrawal symptoms.
I feel the mental health team in making me out to be misusing benzodiazepines were trying to shift the blame for the over rapid withdrawal (which I had included in my complaint) back onto me, the patient – I was “abusing” the medication.
They maintained that a 6-week withdrawal was acceptable despite me being on a high dose for years and having severe and protracted withdrawal symptoms.
I can promise you I wasn’t abusing benzos. I have now been off all prescription medication for 7 years.
Record 7
“their feeling is that he has a narcistic personality disorder”
My ex-psychiatrist once suggested to me he thought I might have a personality disorder, when I repeatedly refused to accept his opinion that my PSSD symptoms were psychological. He saw my refusal to accept his opinion and that of other staff at the mental health services as evidence of a personality disorder.
“he does extensive research on the internet until he finds an answer somewhere that corresponds with his view”
The mental health team on a number of occasions pointed out to me, that the stuff on the internet I was showing them about PSSD shouldn’t be taken too seriously – because there are all sorts of things on the internet, and a lot of it isn’t valid etc.
What upset me about all of this was that this GP knew PSSD existed, and instead of standing up for me, and saying that he had had past patients with PSSD, and I had a legitimate reason to be concerned, he sided with the mental health team, and almost went out of his way to make me out to be the problem.
I feel very betrayed by this.
Record 8
“Known paranoid depression. Presented today with wanting help with depression. Is convinced that his citalopram taken 6 years ago, has led to sexual dysfunction, and wants to be believed about this”.
I saw an out of hours doctor in 2012, because I was again feeling suicidal about PSSD. She did not believe me and told me she thought my PSSD might be symptoms of paranoid depression.
Record 9 Telephone call (my psychologist).
“Had meeting with Spruce, MIND and, CMHT (community mental health team) manager- outcome positive. Feel way forward is to have formalised review of sexual dysfunction 6 monthly – is not to talk about it at other times. Sounds good idea, though if will work in practice remains to be seen… will write letter formalising this”.
This was after I started my official complaint about the mental health team. It was a message from my psychologist to the GP who knew PSSD was real. I didn’t realise they were communicating between each other. They were trying to stop me talking about PSSD. They would try to make me change the subject almost every time I brought it up. It felt like they were trying to censor me from talking about PSSD.
Record 10 Telephone call (my psychologist)
“Due to have meeting with to discuss parameters of therapy. Feeling hard to engage because Spruce angry about sexual dysfunction. Fixated on this, and wants (my psychologist), to put things in writing RE this, which is inappropriate. I would be unable to attend, but we discussed my views (agree with psychologist), and they will feed back to me, so we can all have same approach with Spruce.”
In one meeting with my ex psychiatrist, with my psychologist present, after showing him internet material suggesting PSSD was real, he finally admitted it might be real.
I asked him to put this in writing, which he declined to do. I asked my psychologist, who was present at the meeting and heard what my ex psychiatrist said, to put it in writing. She declined to do this, and instead, after talking to others in the mental health team told me that we needed to focus and talk about how, “I was the problem“. So telling the truth about what was said, and discussed in the meeting, is apparently “inappropriate“.
Trying to point out very obvious, and clear, long-term harms of prescription drugs can end up being like trying to get your voice heard within a caste system, when you come from one of the lower castes.
It doesn’t matter how correct, or in the right you are, the doctor knows best, and is the medical professional and you will often be treated like an uneducated, uninformed patient who’s opinion on what is happening to your own body, simply cannot be trusted, or be taken seriously.
The problem is never the drug, it is you!
They have tried to blame my PSSD symptoms on: anxiety, low self-esteem, paranoid depression, OCD, narcistic personality disorder, benzodiazepines, looking up things on the internet and convincing myself I have PSSD, and complex psychological problems.
Everything but Citalopram.
I still have numb genitals, zero libido, pleasureless orgasms, reduced semen volume, unreliable erections, needling nerve pains in my genitals, and numb emotions, despite being off all SSRIs since January 2009 and suffering from PSSD for almost 15 years now.
To this day, the mental health team still won’t acknowledge what has happened to me.
People Acknowledgement
RxISK acknowledges that the experiences of those who have been harmed by medical treatments are the cornerstone on which it is built. This cornerstone has been rejected by a set of invaders who now claim control over our healing spaces. These invaders pose a threat to our spirits and our bodies.
See Black Robe, White Coat for more detail on the people acknowledgement
J says
Reading Spruce’s story it’s an absolute scandal how he has been treated by people who really should know better. There is no better person to evaluate if something isn’t right than yourself.
I have had PSSD myself for close to a decade now and I was met with similar disbelief by my GP initially and he typically prescribed more of the same (SSRI’s). Talk about lack of knowledge of ones own profession. At the end of my tether, I paid privately to see a urologist. It was he who first mentioned the possibility of PSSD and told me that there was no known cure. Up until then I had never heard of the condition.
Luckily he corresponded with my GP and although I do not know what was said about me personally, it did at least open the door on it being taken seriously.
If you look up what these drugs can do to people It is well documented and not uncommon, so it seems very strange to me, as a layman, I can verse myself in this area and yet many doctors seems oblivious to the obvious.
tim says
Spruce, Thank you for your deeply moving post. I had hoped that the increasing RxISK evidence for the reality of PSSD, and expert, publications identifying the importance of PSSD, may have resulted in debate; or even an Editorial in Journal/s devoted to General Practice. It does not appear that it is widely understood that these drugs have been reported to have been used as a component of voluntary ‘chemical castration’ in ‘selected’ sex offenders. My understanding, from a forensic psychiatrist’s publications, and from press reports is that these offenders were advised that the effects were reversible. I do not know if this use continues.
The words of Sir William Osler once again are brought to mind, perhaps they merit repetition:
“Listen to your patient, he is telling you the diagnosis”.
L says
in the midst of disgust this account gave me this reflection. it highlights a psychosocial dynamic that contributes to hindering an updating process. the one whereby no one in a team likes to play the black sheep or the rebel, which would entail breaking harmony with colleagues, arguing, being criticised and frowned upon by others.
there are not only health professionals who deny out of ignorance, personal / professional convenience, conspiracy of silence and arrogance, there are also those who lack the social courage (and social position). they may listen to you and think “wow! why shouldn’t I believe him?” but then remains silent within the team (even after reading a post like this).
probably if an authoritative person in the team would say without hesitation that yes, that patient is suffering from pssd, it would turn out that others didn’t really have all that much confidence that pssd is not possible, but it was like a social norm.
now it is also obvious that we point out the many negative responses we have received but this criticism I don’t know if it will be what will change things (underlines what is the current norm).
where possible it’s better to point out to specialists the (albeit few) affirmative answers we have received in the past, so they will be more inclined to keep an open mind without even needing to be brave.
skit maybe at the moment unworkable: to have a document gathering the positive answers of specialists on pssd, not to slap a specialist with it who doesn’t know about pssd but to embarrass him at the thought: the whole world knows and I didn’t know?
Dr. David Healy says
This is where the document on Diagnostic Criteria with its 37 different authors may be helpful
Diagnostic Criteria for Sexual Dysfunction
D
ANON says
Hello Spruce,
So sorry to acknowledge you have to be treated like this.
I hope you receive the support, acknowledgement, understanding, respect, compassion and kindness that you deserve.
I strongly concur with Tim.
“Listen to your patient, he is telling you the diagnosis”.
AD says
Spruce, your story above is truly shocking – although probably not shocking to any of us who recognise how the system operates.
People sometimes say that their pets receive better healthcare from their vet than what people do from their doctors and other healthcare workers. This can often be true and the reason is simple: people who go into animal care as a profession generally have a genuine passion for animals. I do not believe the same can be said for the majority of doctors. There of course some good ones, but it is my belief that the majority go into it for the status and the earning potential; and when that status is ‘achieved’, then comes ego. And with ego comes a very dangerous power dynamic.
What you experienced with these people Spruce (and I realise not all of them were doctors and therefore the status/money dynamic is not at play in all the cases, although I would still argue a lot of ego is involved) is being on the wrong end of that power dynamic. You went to them for something – whether that was in hope of a solution to the problem, to gain recognition of what has happened, or some other reason – and instead of finding a professional wanting to understand and investigate your issue, you met the ‘ego’.
The ‘ego’ you met responded in the way that it did for one of two reasons: a) because it knew you were telling the truth and for various reasons (which most of us here probably recognise) it did not want to admit it, or, b) it was unsure if what you were reporting could be true, but given that it knew it did not have a solution to the problem if it were true, what value was there in investigating it and potentially opening the accompanying can of worms.
Whilst the two reasons at first glance appear different, they are actually the same: maintenance of the ‘ego’ is more important than the wellbeing of the patient and indeed the truth.
So, having read your story Spruce, the question that comes to my mind is how can you/we turn this power balance around? Well, I believe that knowledge is power. And it is here that we find the ‘ego’s’ weakness: its severe lack of knowledge. It knows little about the mechanisms of SSRI’s and it knows little about their downstream effects throughout the body. But more and more people (outside of the world of medical egos) now know more about these things than it does. And an increasing amount is being written and spoken about in terms of the effects of these drugs. There is clear evidence and I believe the power balance will eventually turn. I heard a saying recently (I think it might be Chinese): ‘there are three things you cannot hide forever – the sun, the moon and the truth’.
AC says
This is a horrible heartbreaking situation Spruce. A Sunday Times Best selling author Dr Jessica Taylor did recently draw attention to PSSD. She has thousands of followers on Twitter, Facebook. I did mention Risk’s work to her on her Fb page, but no idea whether she noticed it. Apparently there are thousands of young women online and especially on tiktok complaining about lack of libido both on and off ADs, the narrative being pushed though is that it is preferable to be Asexual and take the ‘life saving’ Meds than to make a fuss about it… Spruce I know of a GP who prescribed Citalopram to a patient quote ‘To calm their old fella down’… This GP clearly believed Citalopram affected sexual functioning. I was prescribed Sertraline in 2004 for PND(In reality just tired and stressed due to having a demanding job, a toddler and a newborn) I cannot believe that I bought into ‘The chemical imbalance’ Theory of depression. I knew Sertraline was completely knackering my libido but was scared to come off it.. GPS told me my lack of libido was a relationship issue and to get relationship counselling.. We would be told to have date night (Book the baby sitter, book the restaurant, have the Champagne) but of course ‘Afters’ was impossible as it felt like there was no impulse at all to get aroused. It was like the power was disconnected. If you take the batteries out of the remote it doesn’t work., no matter how much the mind wants it too. Of course this has a devestating impact of a relationship, with both partners worrying that they are falling short.. In 2004/5 no-one was telling me it was the Sertraline, but I knew it was. I had been on benzos for years and had managed to remain orgasmic on them. What is in ADs that knacker libido?
Eventually in 2015 I decided to taper benzos, finally jumping off in 2017,then I decided in 2018 to start tapering my AD (By now Effexor not Sertraline) I am now down to 24mg and can say some lidido is coming back… For this I am so incredibly grateful… Having struggled with Serious Sexual dysfunction for 18 years. Spruce I really hope a cure can be found. I found meaning in life through my kids, career, interests but I at least had had an active healthy sex life from 1980 – 2004.
Spruce says
Thank you for all of the comments.
It still never ceases to amaze me looking back, just how badly I was treated, and at times deliberately betrayed, by the mental health team.
It was really bad, and this post only tells part of the story.
Almost every single person I have talked to with PSSD, tells a similar story as mine; of being disbelieved, gaslighted, with some even being diagnosed with “mental disorders”, to help “explain away”, the symptoms of PSSD.
I have often heard of people with PSSD having their own families side with the psychiatrists, who claim the PSSD symptoms are psychological, or part of a newly diagnosed mental disorder.
So even their own families don’t believe them, and agree with the psychiatrist, that the PSSD symptoms are “all in their head”, or part of a mental disorder.
But with more information and evidence mounting that PSSD is a real condition, there is hope others in the future will be believed; and won’t be re traumatised by the medical establishment, in the same way people are now.
L says
Transcranial Photobiomodulation Therapy for Sexual Dysfunction Associated with Depression or Induced by Antidepressant Medications.
Photonics 2022, 9(5), 330; https://doi.org/10.3390/photonics9050330
https://www.mdpi.com/2304-6732/9/5/330 full text
This review reports improvements in symptoms of sexual dysfunction caused by depression or antidepressants, depression and anhedonia through a type of transcranial laser treatment.
Waldinger’s 2014 PSSD case report is mentioned in which a local laser treatment to the genitals had resulted in symptom improvement of genital anaesthesia.