Our Love Life Needs You © Nina Otulakowski August 2022
This post calls on everyone, male or female, currently or previously taking any drug who thinks that a drug may have impacted on their fertility.
Fertility should be of interest to anyone taking serotonin reuptake inhibiting drugs – SSRIs, SNRIs, tricyclics, antihistamines, antibiotics, analgesics and related drugs – and we will use SSRIs to illustrate the issues but the points made apply to most medicines, far more than the obvious ones like finasteride (Propecia) and isotretinoin (Accutane).
It applies to calcium channel blocking drugs used for hypertension, angina, and cardiac arrhythmias, to the benzodiazepines, antipsychotics, and anticonvulsants which between them are probably given to 20 to 25 percent of the population, and drugs you wouldn’t expect to cause infertility – like testosterone.
We’d have been amazed, if told when RxISK began that it would have featured sex so much. That has been down to you – not us. You have generated huge amounts of the information now available about the effects of antidepressants on sexual function, both while taking them and after stopping.
Fertility is the latest angle that you, reporting to RxISK and drawing to our attention in other ways, have put in the frame. In terms of looking at issues drugs cause or prevent, this is virgin territory.
Fertility hinges on conception. But drugs do many more things in men and women beyond conception than are dreamt in most of our philosophies. Fertility problems conjure up sperm counts in men, and hormonal issues in women, but there are other ways in which drugs can enter and corrupt this central human mission.
One of the acknowledged issues you aren’t being told about is that SSRIs cause sperm counts to plummet, affecting not just counts but sperm quality and both the quantity and quality of the semen in which sperm function, all of which may compromise fertility.
There are many reports of drug induced hormonal imbalances and breast enlargement in the medical literature with no link to fertility. If your breasts enlarge (gynecomastia) on a drug, you are likely infertile for the time being. While some of these issues are reversible after discontinuation of treatments, the long-term effects of drugs on fertility have never been studied.
With people increasingly taking antidepressants for months, years, or even decades, they seem almost certain to affect national fertility rates which are falling. See Pharmageddon and Fertility. We don’t know what long-term effects there might be for children who took antidepressants, or for those exposed to antidepressants in the womb.
SSRIs and related medications cause significant sexual dysfunction. Conception will be more challenging for couples trying to conceive if one or both are on antidepressants. While a difficulty maintaining an erection and ejaculating are the obvious problems for men, these can be overcome with testicular sperm aspiration, but the failure to conceive naturally through intercourse is still a fertility problem.
For women or couples, a loss of libido is going to make conception less likely, along with other factors in women that make sex less comfortable or even feasible. Rates of IVF in most Western countries are escalating rapidly.
Finally, several drug groups like SSRIs, finasteride, isotretinoin and anticoagulants can cause post-treatment sexual dysfunction (PSSD for SSRIs), which can have drastic effects including marriage breakup, job loss, and suicides.
PSSD and related conditions make it difficult or impossible to engage in not just sex but also normal romantic relationships. These are intimacy shattering problems; leaving many people bereft of something they looked forward to and the rest of their family often wondering what has gone wrong.
Sara Baldini
A recent paper Sara Baldini and colleagues stimulated this post. She investigated the role of medications in male factor infertility by searching the FDA Adverse Event Reporting System for reports of fertility problems. Unsurprisingly, SSRIs made an appearance in the top 10. But the surprising result was that finasteride came top of the list with more than double the number of reports than the drug in second place, testosterone.
Finasteride is prescribed to young men to combat male pattern baldness and can produce a similar condition to PSSD called post-finasteride syndrome (PFS). It’s possible that the large number of reports may have been a coordinated effort on the part of PFS sufferers to report their issues to FDA. This doesn’t make the reports any less valid. It shows that most people don’t report their problems to a country’s drug regulator.
These results are a tribute to PFS activism. If only because SSRIs are used in vastly greater amounts than finasteride, there should have been many more reports of PSSD than for finasteride. But SSRIs also make people indifferent which may play a part in poor reporting. Antipsychotics make people even more indifferent than SSRIs and likely cause just as much infertility but don’t appear in the Baldini report.
Reporting
Your country needs you. In a post soon, we will lay out the impact of SSRIs on national fertility rates. The brief message is – wherever you live, you have a DUTY to draw your sex and fertility problems to the attention of politicians and authorities.
Whatever country on earth you come from, RxISK would welcome your RxISK Reports.
To widen the impact, can you also report to your country’s drug regulator
- America – FDA’s MedWatch
- Australia
- Canada
- India
- Japan
- Korea
- New Zealand
Europe
- Austria
- Belgium
- Bulgaria
- Cyprus
- Czechia
- Danmark
- Estonia has one but we can’t reach it from here
- Finland
- France 1
- France 2 France has regional pharmacovigilance centres which may be better
- Germany 1
- Germany 2 – this is the drug approval agency.
- Germany 3 – this is apparently the best link to use
- Greece – where the word pharmakon comes from
- Hungary
- Ireland – who invite you to make this site work hard for you
- Italia
- Latvia
- Lithuania
-
Netherland 2 – Lareb who are a great site – they act on reports.
- Romania
- Slovakia
- Slovenia
- Spain 1
- Spain 2 Spain also do regional pharmacovigilance
- Sweden
- United Kingdom – Give you numbers of report received.
Some of these sites like the UKs may also give numbers of reports on your drug and its problems that they have received. Let us know if the do.
EMA is like a cross between the Medici and Kakfa’s Castle. They say they have thousands of scientists doing pharmacovigilance but they don’t seen to have a reporting website – they pharm this out to Europe’s regions like France or Spain and private companies to do the reporting.
Eudravigilance gives numbers of drug events sent into EMA from the regions.
If you have any sexual side effects at all, these affect fertility and can be reported as such. For example, a loss of libido should be reported as both a loss of libido and a fertility issue.
MedDRA – The Medical Dictionary for Regulatory Activities recently added a code for post-SSRI sexual dysfunction (10086208). Anyone reporting PSSD to a drug regulator should specifically mention “post-SSRI sexual dysfunction” and “MedDRA code 10086208”.
But don’t just put “PSSD”. When we wrote our 300 Cases paper, we had to exclude a lot of reports because people only listed PSSD with no specific symptoms. Adverse event reporting databases work by logging all the symptoms you report against a list of terms. If you don’t specify the different symptoms (eg. genital anaesthesia, erectile dysfunction, orgasmic sensation decreased), when researchers check the database to see if particular drugs are causing these problems, they won’t find anything – because you didn’t report them.
And add fertility.
Reaction terms
To see what kinds of reaction terms are available and are being used, or may have already been reported on your drug, visit our Drug Search page, which has a downloadable list of all reaction terms used in FDA’s database.
A useful way might be to visit our Sex and Relationships zone, and enter the name of an SSRI or SNRI in the search facility. This will give you a list of all sex and relationship related reactions that have been logged for that drug.
You’ll probably find that terms like “genital anaesthesia” and “orgasmic sensation decreased” are fairly low in the list despite being the hallmark features of PSSD. As mentioned above, it’s likely that some people with PSSD have so far only described their problem in terms of erectile dysfunction and loss of libido.
(The FDA database weirdly uses the English spelling of the word anaesthesia, so please be aware when looking for it – and with all other terms beware of US, UK or other spellings).
To report a fertility problem, we suggest using “Infertility Male” or “Infertility Female”.
For those of you who want to research all adverse event reporting sites in more detail and join our mission to get decent reporting – Here are all MedDRA codes.
If something you think isn’t on the FDA Adverse Reporting System either in a usable way or not there, for instance, you can put it there by reporting a better term and adding the appropriate MedDRA code. One example might be penile shrinkage which has lots of online reports but may not be in FAERS. Ideally get others to report it too with the best MedDRA code.
Testing
Men – can you get a sperm count, plus tests for quality and motility, and semen analysis. This may be confronting. No-one knows how much sperm counts recover after stopping an SSRI or other drugs. Men with PSSD ironically may have better sperm counts than anyone else.
There are a lot of online reports from people with PSSD – PFS etc – describing visible changes in semen volume and quality – typically a reduced amount of semen and watery. But there seem to be almost no reports of anyone having these things tested. The more data we have on these issues, the better.
If you’ve had any of these tests done, please let us know the results. If you haven’t, consider having them.
In the Zone
Sex is often linked to being In the Mood. RxISK already lets you get In the Zone for sex. In the very near future we will want you to get in the zone for fertility.
After languishing for some years, we’ve relaunched the RxISK Zones . These aim at making it easier for you to gather information about key drug effects and help you to become an expert in these areas, hopefully letting us know how to make this work better for people like you.
The Zones include the original Hair and Skin Zones, Suicide and Violence Zones, a Sex and Relationship Zone, and a Withdrawal Zone. The latest is a Vision Zone.
A Hair Zone – We’ve had floods of reports on drug impacts on hair. In the 1960s women and hairdressers showed experts are often irrelevant to finding out what drugs really do.
A Skin Zone – Skin is the biggest organ we have, the boundary between us and the world, and the impact of drugs on it can be highly political.
A Suicide Zone – It is now clear that antibiotics, pain-killers, statins and hundreds of other drugs beyond the psychotropic drugs can cause suicide.
A Violence Zone – When a drug someone else takes can harm you or one you take can harm others, this makes drug induced violence a highly political and contested area.
A Sex and Relationship Zone – Also a zone where a drug your partner takes can harm you or vice versa.
A Withdrawal Zone – Getting hooked to a drug undermines our autonomy – the last thing we want. Many gut, asthma or allergy drugs in addition to brain drugs cause this.
A Vision Zone – Your reports have made RxISK a go to place for visual snow and other problems happening in plain sight that not even eye doctors currently link to the drugs you may be on.
A Fertility Zone – is our next Mission. We hope to announce the birth any moment. Why Fertility? Because in addition to the drug you are on harming your partner or their drug harming you, this is where a drug you or they are on can affect the entire country in which you live. National authorities are very worried about these effects but at the moment keeping very silent about them.
Noreen Normandeau says
My husband suffers from PSSD, having taken Citalopram for 15 years. He suffers from ED, loss of libido, no sec drive, genital numbness,
JHT says
1 day of Citalopram absolutely destroyed my life. No connections to anything anymore, no sexual function. No libido but that’s the last thing im worried about. Being stripped of your emotions is pure torture and a death sentence. I look at my own family and feel NOTHING towards them. Something horrible could happen and I wouldn’t even be able to cry, it’s impossible. This is so inhumane and I can’t believe it’s 2024 and nothing has been done for PSSD yet.
Dr. David Healy says
J
Thanks for the comment. There was a lot more happening in 2022 and 2023 than there has been for a long time largely down to the efforts of the PSSDNetwork and others who came out and put their names and faces to the problem.
Almost no-one it seems has reported PSSD to regulators, politicians, the media or anyone. If we all what change, then this has to change – there is a need to get in peoples faces.
Perhaps its the lack of caring, lack of emotions you described that is stopping things happening. While unemotional, people with PSSD still seem able to think and strategize and this may be the wrong word for her but take revenge – the word revenge comes to mind because of the famous phrase revenge is a dish best served cold.
David
Tim says
This is not true. At least the Finnish patient group has done quite active work, and an extensive PSSD article has recently appeared in the country’s largest newspaper. In addition, a smaller magazine has made a meritorious article. I have personally contacted journalists and for example sent emails to psychiatrists who do not believe PSSD exists.
Dr. David Healy says
Thanks for the comment. The Finnish group has been more active than most but it was a Finn who told me people with PSSD even in Finland are very passive. Still what this post asks has everyone in Finland filed reports on PSSD and all their related drugs induced problems with the Finnish medicine’s regulator and perhaps with FDA also – who take reports from overseas.
Getting PSSD, PFS and PRSD/PAS is devastating but in addition a lot of people have profound emotional numbing – it creates a form of Living Death that for some I can imagine makes it seem futile to try doing anything. It is still worth thinking – not feeling – about strategies to break through the wall of silence.
David
susanne says
Would it be worth contacting this group which does seem to have funding for research? I know the Serotonin theory has been discredited but they could maybe be influenced or encouraged to investigate further using first hand accounts from people who have experienced this horrible condition themselves .
They recruited a samll group of ‘volunteers’ themselves so this would benefit from people independently providing first hand ‘accounts’ If they were all gathered in from different sources there are thousands of valuable records which just might influence their research.. They are part of the establishment though……and can’t see how they are funded.
.Scientists have worked out why common anti-depressants cause around a half of users to feel emotionally ‘blunted’. In a study published today, they show that the drugs affect reinforcement learning, an important behavioural process that allows us to learn from our environment.
According to the NHS, more than 8.3 million patients in England received an antidepressant drug in 2021/22. A widely-used class of antidepressants, particularly for persistent or severe cases, is selective serotonin reuptake inhibitors (SSRIs). These drugs target serotonin, a chemical that carries messages between nerve cells in the brain and has been dubbed the ‘pleasure chemical’.
One of the widely-reported side effects of SSRIs is ‘blunting’, where patients report feeling emotionally dull and no longer finding things as pleasurable as they used to. Between 40-60% of patients taking SSRIs are believed to experience this side effect.
To date, most studies of SSRIs have only examined their short term use, but, for clinical use in depression these drugs are taken chronically, over a longer period of time. A team led by researchers at the University of Cambridge, in collaboration with the University of Copenhagen, sought to address this by recruiting healthy volunteers and administering escitalopram, an SSRI known to be one of the best-tolerated, over several weeks and assessing the impact the drug had on their performance on a suite of cognitive tests.
In total, 66 volunteers took part in the experiment, 32 of whom were given escitalopram while the other 34 were given a placebo. Volunteers took the drug or placebo for at least 21 days and completed a comprehensive set of self-report questionnaires and were given a series of tests to assess cognitive functions including learning, inhibition, executive function, reinforcement behaviour, and decision-making.
The results of the study are published today in Neuropsychopharmacology.
The team found no significant group differences when it came to ‘cold’ cognition – such as attention and memory. There were no differences in most tests of ‘hot’ cognition – cognitive functions that involve our emotions.
However, the key novel finding was that there was reduced reinforcement sensitivity on two tasks for the escitalopram group compared to those on placebo. Reinforcement learning is how we learn from feedback from our actions and environment.
In order to assess reinforcement sensitivity, the researchers used a ‘probabilistic reversal test’. In this task, a participant would typically be shown two stimuli, A and B. If they chose A, then four out of five times, they would receive a reward; if they chose B, they would only receive a reward one time out of five. Volunteers would not be told this rule, but would have to learn it themselves, and at some point in the experiment, the probabilities would switch and participants would need to learn the new rule.
The team found that participants taking escitalopram were less likely to use the positive and negative feedback to guide their learning of the task compared with participants on placebo. This suggests that the drug affected their sensitivity to the rewards and their ability to respond accordingly.
The finding may also explain the one difference the team found in the self-reported questionnaires, that volunteers taking escitalopram had more trouble reaching orgasm when having sex, a side effect often reported by patients.
Professor Barbara Sahakian, senior author, from the Department of Psychiatry at the University of Cambridge and a Fellow at Clare Hall, said: “Emotional blunting is a common side effect of SSRI antidepressants. In a way, this may be in part how they work – they take away some of the emotional pain that people who experience depression feel, but, unfortunately, it seems that they also take away some of the enjoyment. From our study, we can now see that this is because they become less sensitive to rewards, which provide important feedback.”
Dr Christelle Langley, joint first author also from the Department of Psychiatry, added: “Our findings provide important evidence for the role of serotonin in reinforcement learning. We are following this work up with a study examining neuroimaging data to understand how escitalopram affects the brain during reward learning.”
The research was funded by the Lundbeck Foundation.
Reference
Langley, C, Armand, S, et al. Chronic escitalopram in healthy volunteers has specific effects on reinforcement sensitivity: A double-blind, placebo-controlled semi-randomised study. Neuropsychopharmacology; 23 Jan 2023; DOI: 10.1038/s41386-022-01523-x
Dr. David Healy says
Good spot. I’ve known Barbara Sahakian for ages. The work is interesting but nothing really new – we have known about this for 25 years or so. While it is always useful to have ‘findings’ especially the latest the point about apathy and emotional numbing doesn’t really need supplementing with findings. And Barbara and a group like this are not going to get involved in raising the real world problems that SSRI and related drugs cause – that’s just not their thing.
There is hope – it comes from PSSDNetwork and others doing the right things – hitting the media trail and above all coming out and putting names and faces to the problem.
D
Rob says
Hello, what happened to the cohoperation with the Mario Negri institite? I cant believe we are letting young people see their lives being destroyed without doing nothing. And it is also detrimental that the sufferers have to fund the researches.
Dr. David Healy says
The Mario Negri were never whole-heartedly committed to this and have vanished from the scene.
DH
Rob says
That is really sad, Dr Healy.
Thanks for answering. So in the end there is still no viable treatment and we are still abandoned. I, with my little resources, sent some money to fund the research and have contacted countless of journalists. No one replied. And in the meantime I saw my life crumble. No hope left
Dr. David Healy says
Rob
Its one of those things. Someone high in the organization thinks we should research PSSD and they delegate to someone who is not interested. The lesson is not that we give up but you have to engage a lot of organizations and get lucky finding someone who makes it a personal mission and even then that person has to get lucky and stumble on something that leads somewhere.
If you and everyone else with PSSD gives up we are never going to get lucky. See response to comment on this weeks post New Year New RxISK
And see and think about next weeks posts when they are up – the hope is linking PSSD into fertility issues and a growing fertility crisis might help give us more visibility and more momentum – but making a link is one thing – it needs people like you to stuff it in the face of politicians, the media, lawyers and others
DH
Rob says
Easier said thsn done dr Healy. Pssd is well known and the sufferers have often no strenght to fight. It isvlike asking disabled people or very ill patients (with sll due respect) to fight for themselves and give money It is not how it should work. It s people eho are sane and have resources that should do that. Thst s how I see things. I am in these since 2013 and have fought a lot. 11 years later still nothing
Dr. David Healy says
Rob
If folk with AIDs had given up they’d all be dead and we’d have no cure now. I think the PSSD network have made a huge difference by taking a very courageous step and coming out and getting in people’s face. My hope linking PSSD to fertility is to catalyse things – if you are waiting for people who have not got PSSD to make a difference you will be waiting for ever – you have to hit them where it hurts – PSSD is just one part of a problem that means you aren’t going to have grandchildren.
David