Last month, we announced details of two new publications about enduring sexual dysfunction after the use of medications. We hope you found them interesting.
In both articles, we discussed a couple of studies from 1991 and 1999, in which neurophysiological testing showed that taking a serotonin reuptake inhibitor reduces genital sensation. We have previously mentioned these studies on the blog, but we wanted to draw attention to them in the PSSD literature as we believe they are very important.
Genital numbness or loss of genital sensitivity is one of the major hallmarks of PSSD. It happens to some degree to almost everyone who takes an SSRI or SNRI, and for some people it persists afterwards, or can develop when the person stops the drug.
In the studies mentioned above, small electrical impulses were used to produce a sensation at the genitals. These impulses were then reduced in intensity until the subject could no longer feel them, thereby providing a measurement of genital sensory threshold. This is different to nerve conduction studies which also use electrical impulses, but which involve the direct measurement of electrical signals to assess nerve function, rather than measuring the sensation that the patient can actually feel. Nerve conduction studies typically only assess large nerve fibres, meaning that the test can produce a completely normal result even though the patient might have problems with smaller nerves.
A disadvantage of using electrical impulses to assess genital sensation is that most people would be hesitant about subjecting their genitals to electricity. Fortunately, there are other methods of investigating sensory issues.
A few weeks ago, we asked whether there might be a link between PSSD, withdrawal and small fibre neuropathy. Could SSRIs and SNRIs be disrupting the normal functioning of small nerve fibres throughout the body, and could this be responsible for some of the problems seen in PSSD and withdrawal?
We think this is an important idea to explore and we are still keen to hear from those with PSSD or withdrawal problems who have been tested for small fibre neuropathy. We discussed several tests that can be used to investigate this condition including skin biopsy, corneal confocal microscopy and quantitative sensory testing.
Quantitative sensory testing is the collective term for a group of tests that are used to assess skin sensation. Devices which produce different types of stimuli are placed against the skin, usually on the hands or legs, and the patient is asked if they can feel the sensation. This could include temperature changes, pressure, vibrations, and others. Different stimuli activate different types of nerve fibres. For example, vibrations are useful for measuring responses in mainly large nerve fibres whereas changes in temperature are predominantly picked up by small nerve fibres.
The interesting point about quantitative sensory testing is that in addition to investigating conditions like small fibre neuropathy, it is sometimes also used in urology if a patient is experiencing genital numbness, or if they have erectile dysfunction that is suspected to involve a neuropathy. In these cases, the stimuli are applied directly to the genitals.
This raises the question of whether this type of testing could be used to measure the genital numbness in PSSD. The issue isn’t straightforward as there are various types of stimuli that could potentially be used and it’s difficult to know which ones, if any, would capture the abnormality. The complex nature of the genitals also adds a further complication – exactly which area of the genitals should you test?
We recently came across a 2003 paper by Bleustein et al, called “Quantitative somatosensory testing of the penis: optimizing the clinical neurological examination”. It looked at various types of stimuli at different genital locations to establish the best method of investigating for penile neuropathy. The study found that warm thermal thresholds at the glans produced the best results.
Thermal thresholds are assessed by placing a probe onto the body part being investigated. The temperature of the probe then increases or decreases slightly and the person is asked to report when they can feel the change, usually by pressing a button. Note that these are only moderate temperatures and not something that would cause burning or pain.
The findings of the Bleustein et al study may be very useful when it comes to PSSD. By narrowing down the list of possible tests to just one in a single location, it raises some interesting possibilities for research.
We know from clinical experience that most people will have a degree of genital numbing after taking a single dose of an SSRI, often within just 30 minutes of taking it. It would be fascinating to assess penile sensation in one or two healthy volunteers, then give them an SSRI and see how quickly this changes.
The technique could perhaps be used to assess genital numbness in a few PSSD sufferers. It might also be interesting to take a few people who previously used SSRIs, but who don’t have PSSD, and assess whether their genital sensation has returned to normal levels.
If we can find someone with experience of carrying out this test in a clinical or research setting, and we can interest them in PSSD, there might be an opportunity to explore these ideas – perhaps with a small pilot study. The advantage of testing thermal thresholds is that it’s quick, non-invasive, and is likely to be relatively inexpensive compared to something like fMRI.
If it turns out to be a useful method of objectively capturing abnormal genital sensation in PSSD patients, it might be particularly useful to those who have had difficulty in getting a diagnosis. It would also once again highlight the fact that SSRIs reduce genital sensation – something which seems to be consistently absent from conversations about SSRI sexual side effects.
Unfortunately, quantitative sensory testing isn’t available everywhere, and may be even rarer in a urological setting. It’s possible that it might be more commonly used in the US than in the UK, but it’s difficult to know for certain.
We need your help to find clinicians or researchers who might have experience of using quantitative sensory testing for genital issues, and particularly the testing of penile thermal threshold. One thing you could do is write to the urology department at hospitals in your area to ask if this type of testing is available. If you can find some hospitals where this is carried out, we can approach them about a possible collaboration. Obviously, if you have already undergone this type of genital testing for PSSD, we are very keen to hear about your results.
Recently, we have been receiving a lot of emails from people suffering from PSSD and similar conditions, asking questions that have already been covered in detail on the blog. We are concerned that people are not keeping up to date with our content, and that useful information is not being acted on. Continuing to answer the same questions is also taking up a lot of our resources.
To avoid missing any posts, we would suggest subscribing to our monthly newsletter which includes a recap of all recent posts on RxISK and davidhealy.org, plus any other important news. We also have an RSS feed.
All posts on a particular topic can be viewed by clicking on the category down the right-hand side of the blog. If you click on “sex”, this will list every post relating to sexual problems involving medications.
We will also try to make some small improvements to our main PSSD page so that any recent news or ideas will be more visible.
We have had an immediate response from one of our readers (SS) who has found 5 articles on QST and sexual functioning – all of which look very promising. Four are posted here and are worth downloading and chasing further.
Living with PSSD is torture. Most sufferers are young people who might never know what normal sexual functioning is. It’s so unbearable to take these medications to “treat” a temporary mental illness and live with a condition that is not treatable for good. When will a cure be found for this?
It will never ever be found if people with the condition don’t start doing their own research and the kind of tests outlined in this post. The first reports to regulators about PSSD were in 1987. They ain’t done nothing since and won’t.
People with PSSD have to be more like people with AIDS. ACT-UP
“It will never ever be found if people with the condition don’t start doing their own research and the kind of tests outlined in this post.”
Um, have you forgotten about the rxisk prize you promised us?
see reply to Mona
“The first reports to regulators about PSSD were in 1987”
Just being curious, the case you are referring to, was due to TCA or SSRI ? As you know, both of them share the same MoA. Is there any place to find how many cases of unresolved emotional / sexual AEs the regulators ( specifically FDA, as EMEA has public database ) have until this day, how many were connected separately to TCA or SSRI ?
We think it was an SSRI – fluvoaxamine – available on UK market since the previous year.
What about psychiatrists? I visited too many and talked about the persistent sexual dysfunction caused by their “safe drugs”. They just don’t listen to us. They label us as mentally ill and put the blame of out sexual dysfunction on out depression. Psychiatrists who prescribe these drugs should do the research. They put us in this mess. They should believe us in the first place. We don’t have the knowledge to research about this condition. We have support groups. People are desperately trying different drugs to reverse the damage SSRIs did to them. I think we should be taken seriously first by professionals. We can’t do anything on out own.
Couldn’t,t agree more Angel the docs had the answers when they put us on the drugs but now suddenly they know nothing!
At the risk of throwing something irrelevant into the mix here, I just wanted to say that having taken Prednisolone for only 11 days, (a steroid prescribed because I was having difficulty breathing after being out in an area that was being crop sprayed), I too experienced genital numbing which persisted for many weeks after the course of tablets ended. Also, during those 11 days, passing water was very difficult, as though everything inside me had gone into spasm. My eyes felt pressure behind them and my diaphragm would not respond to attempts at deep breathing. The genital numbing was weird, and only after careful attempts at detoxing the body of the steroid residue, (if such there was) by taking Vitamin B at high doses, was normal service resumed after 6 months.
I only write this in wondering whether something in SSRIs shares a chemical with steroids in some way, and whether this might be of help in tracing a pathway of causation of genital numbness. Apologies if this is irrelevant information. I have never taken SSRIs.
As the test seems quite harmless -Would it be possible to invent a small device which people could use safely themselves to find the area of change to sensitivity?
Is the RXISK prize not happening anymore or something?
It seems that nothing positive has been posted to this site since the announcement of the RXISK prize, which I’m starting to think is a callous scam devised to give false hope to others.
The risk prize is happening – but it looks like people like us all need to all but come up with the answer on a plate for some high powered research outfit to get intereeted.
The rxisk prize does not mean everyone sits back passively and lets someone else do the job. Its like AIDS and ACT UP – if the AIDS activists hadn’t all but told the pharmaceutical companies the answer no company would have “found” it. The companies get the credit then but hey the rest of us get to live
So the companies cause all the damage to us. Then expect the people who were damaged by them, to find the cure themselves. Then the companies take all the credit for our hard work and make more money off of us.
Something about this whole scenario severely pisses me off!
We are basically being treated like disposable lab rats who’s suffering is to be ignored unless we have some way of making their company more money.
It is morally repugnent!
Am i the only one to feel this way?
I just realised how rude my previous message to you was, I’m sorry. I was really fed up at my time and discouraged.
There has got to be a way back to how we used to be, surely.
Thank you for being gracious in your reply despite me being nasty to you.
My hunch is, if the RxISK Prize can serve as a catalyst to find a cure, it will have to draw in some absolute Upstarts and Outsiders. Here’s why:
For us, $100K is a large, fairly daunting sum to raise. For the drug companies, even the smaller ones, $100K is chump change. As for the working scientists inside those companies, their employment contracts may forbid them to work on an “outside problem” or receive “outside compensation” for a discovery. Anything they discover belongs to their employer. Which means that to do innovative work on a question like PSSD, they would pretty much have to quit their jobs. $100K is not chump change to them, but it may not be enough to tempt them to do that. Ditto for university scientists, who are now much more like corporate employees than they were back in the day.
AIDS activists showed guts and creativity in collaborating with lab scientists, including within the drug companies. But at least they could offer the chance to work on a disease out there in the natural world for which no good treatments existed. We are offering the chance to work on a drug-induced illness. Drug companies (or anyone looking to “monetize” a cure in this system) will compare the cash value of the market for the offending drugs with the market for the cure. Even if 10-20% of users have genuine PSSD, that’s not enough of a market to interest drug companies in a product that will place at risk the much larger market for their original drug. Or, if they don’t make the original drug, one that will start a war with the multinational corporation that does.
The only treatment for a drug-induced disease Big Pharma will consider is one aimed at allowing the patient to keep taking the offending drug! Example: we now have two drugs approved to “treat” tardive dyskinesia caused by antipsychotics. Neither is very good; both are hellishly expensive. And both are pitched as drugs to take ALONG WITH your antipsychotic, to offset the harm it causes, rather than to help you deal with adverse effects that linger after you quit.
And so we turn to the Upstart: someone with a medical or science degree, or just a sharp layperson with an idea. We have plenty of people smart enough to generate a good hypothesis. So how do they test it? Have we (or should we) put together a panel of sufferers who are willing to act as guinea pigs for any reasonably sound idea? How do we screen such a product or procedure first, to make sure it’s not dangerous? Lab work? Animal testing? In other words, how does the Upstart manage to do the work necessary to find that cure?
Maybe that’s where the $100K is really needed … to fund that kind of research, rather than to reward someone after they succeed. What do y’all think?
Johanna makes some good points.
I am worried that if a cure for tardive dyskinesia has still not been found, even though it has been known about for a lot longer than PSSD, and even though it is fully accepted as real by medicine; then how and why would a cure for PSSD be more likely to be found?
PSSD is not yet officially acknowledged by medicine (as my ex psychiatrist liked to point out to me), and is relatively new on the block compared to other medicine induced conditions.
It just feels to me that the task of finding a cure to PSSD is likely to be harder and longer than first thought.
For a start having the condition officially acknowledged by medicine would be the first step needed to get medical professionals outside of Rxisk wanting to be involved in research etc.
Rxisk has made progress towards this with their recent peer reviewed 300 cases of enduring sexual dysfunction, but most doctors still have never heard of PSSD, compared to tardive dyskinesia being accepted by medicine as a genuine condition caused by antipsychotics.
I hope I am wrong and that a cure is on the near horizon and that progress in research and understanding of PSSD happens a lot faster than with what happened with tardive dyskinesia.
But unless a different approach is taken to finding a cure to PSSD, than it was for finding a cure for tardive dyskinesia, then it seems unlikely.
This sounds terribly passive. Patients with tardive dyskinesia were passive. Patients with AIDS weren’t. You personally have done great things but you have to continue being like an AIDS patient – the full range of things that AIDS patients did. I hope there will be a post on dh next week that may begin a catalogue of things people can do
So you are saying people with tardive dyskinesia didn’t “act up”, and that if people with PSSD do “act up”, that things will change a lot faster.
I hope you are right Dr Healy.
But I sometimes struggle to see how the establishment will listen to the small guy. Maybe there is a way though.
Nonetheless i will continue to act up and encourage others with PSSD to do the same.
You can also do more doctor even as much you already have and do – a global act up type campaign against pharma-chiatry and the medical establishment in needed is needed today, yesterday, right now
Pleas as a victim of akathisia is see the whole picture of wha they are doing to people
My name is john cosggrave of Portland Oregon I cant be silent and I need your support desperetly sadly I beg your help 503-819-4772
I look forward with great interest to suggestions soon on the David Healy’s Blog of what ‘acting up’ means, what we all can actively DO. It strikes me that however much we ‘act up’, if no one much hears about it, because we can’t get it publicised loudly and widely enough in the media, then although it will make us feel more involved, and will mean extra effort by us (and heaven knows, many of us have been putting in various kinds of effort for years), if it doesn’t start major momentum with the public via the media, surely it’s going to go off at half cock like everything else we’ve tried, or round and round in a circle of ineffectiveness.
AIDS patients made a wonderful patchwork quilt, a piece of collaged/embroidered artwork for each person who had died stitched into a huge displayable reaction, and they did manage to get publicity for this, indeed a book showing the panels of art was published and I bought it on Amazon. Could we do something similar in memory of all who have died from ADs from their prescribed meds, and get publicity for it? I think Tim has told us about this on RxISK before and maybe could elaborate on this, how it was publicised etc?
To get publicity we need to go in from left field, slip in under the radar of money-fuelled Pharma, like Johanna says. BBC (for example) won’t go in head-to-head criticising a drug, for fear of being sued, but they will consider approaching it from another nuanced angle. That’s how we got them to look at RoAccutane isotretinoin with us on their BBC ‘Inside Out’ investigative programme a couple of years ago shown at prime viewing time 7pm weekdays, short but effective. They latched onto it via showing, not so much how damaging the drug is, but how people can buy it, unmonitored, on the Internet. They got the message across about the dangerous elements of the drug, by highlighting a criminal problem with obtaining it online. They showed that there was ignorance of its need for regulation by dermatologists for each patient demonstrated by its legitimate suppliers in Turkey and imported here, and most of all, showing up the MHRA as the useless pussycat that they are when it comes to incisive action to protect us all. A lot was done by subtle implication. Roche, by their silence, (apart from the printed diatribe they always trot out for the media) and MHRA’s huffy and hilarious (not meant to be) interview, that blamed the naughty patients for being hoodwinked ‘by criminals’ on line, ‘who are out there to get your money’, except that they weren’t, they were small pharmacies officially supplied by Roche! And with a delicate touch, the BBC showed the audience what a load of so-and-so’s they (Roche and the MHRA) really were. But they let them do it to themselves. So how could they sue anyone?
I have one idea that might work, but at the same time it might not.
What about we get as many people with PSSD to phone the MHRA on the same day each month, and all collectively complain about PSSD and the fact that nothing has been done yet to change the labels and warn people about PSSD.
Then we keep hounding them on the same day of each month, and just keep doing it until something is done.
It might be worth a shot. I am up for it and I have 3 people semi interested in it already. We could even get people who don’t have PSSD to call in as well. If we could get about 20 people to call in each month on the same day, and just keep doing it, it might have an effect. Then as time goes by we could get more and more people to join in.
Maybe Rxisk could contact all the people with PSSD and see if they would be interested?
Awesome idea Spruce! Let us know what day/time and gist of the message as I don’t have PPSD myself -but will e mail or phone as often as you like.
I am going on a 13 day holiday, but when I get back I will see if I can get some more people interested, and try and get a day for us to do it etc.
I had a gut microbiome test and can’t understand it so I asked a doctor to read it for me stating I have been told my problems are Cfs by another doctor. Told that my problems are in my brain and hard to get help for, it’s a form of depression
People need to remember David is the only professional we have helping us
We try to do, each of us, at least something, but we do not stay with our hands in our pockets! We have possibilities to activate ourselves in many ways.
There are those who divulge information. Who writes the wikipedia PSSD page in their own language. Who updates a blog on PSSD, it is also useful to be contacted by other PSSD suffers, unity is strength. Those who choose to experiment drugs on themselves, does exams and treatments and share the results on the forums. Who donates what is possible to the Rxisk Prize. Who sends many emails to doctors and researchers of neurology, andrology, pharmacology, endocrinology, looking for someone who is interested in deepening. Who did publish their story in online magazines. Who sends the report of adverse effect to the pharmacovigilance agency. Who prints the Citizen Petition and distributes it to hospitals and delivers it to their psychiatrists. Who opens an association of victims and consults lawyers. If then there is some creative guys, why not give expression to your artistry? There is still not even a song on the subject of PSSD, a film or a poem. Yours could be the first in history. Draw a comic, write a dramatic story or black humor, sing a song, maybe an angry rap to put on youtube, create an animated short film or with actors in the flesh. And share it on the internet, where people who do not live PSSD can make the discovery that exists, and where those who have PSSD can recognize themselves. Let’s make our voice heard, at least a little more! we only have this life ..
Absolutely right. Power to the People ….. by harnessing their respective creativity, from all directions. At least the Internet now enables us to do this. Twenty years ago we would not have had this resource, we couldn’t for instance have shared ideas and experiences on this and other Blogs and forums. Think how ignorant we must have been kept! Such a gift for the controlling drug companies and so-called medical regulation authorities playing lip service to Governments. NOW the worms are turning. We CAN effect change, creep out in battalions under the radar of Big Pharma and hit the spot through as many means as possible. Some of the stuff we share will stick. Countless lives which could otherwise have been ruined, can be saved by what we share. A good reason for our being here, a good purpose for our existence in this world. Making a worthwhile difference.
We all have the power to change things that others consider dismal.
I recall someone telling me that what I am trying to achieve, is like fighting ‘Sampson And Goliath’ and that I will never win.
Hey, it is not about winning!
It is about doing what is right so that many do not have to suffer in silence or die a inhumane death.
I will keep chipping away, until I create ripples that will reach every entire being on this planet.
Rxisk, believe it or not, gives us all the hope to work together and tread where others will not dare to go.
I leave you all with quotes and a song, that will hopefully put a spring in everyone’s step.
If I had to do it all again, I would. When you take rxisks, you never know where they will take you. Sometimes it can be heaven and sometimes it can be hell. At least we can say, we have given it our best shot : ) CB
True strength is keeping everything together when everyone expects you to fall apart.”
Life will break you. Nobody can protect you from that, and living alone won’t either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself you tasted as many as you could.”
– Louise Erdrich
“The most beautiful people I’ve known are those who have known trials, have known struggles, have known loss, and have found their way out of the depths.”
– Elisabeth Kübler-Ross
“Fall down seven times, get up eight.”
– Japanese Proverb
“I have no regrets in my life. I think that everything happens to you for a reason. The hard times that you go through build character, making you a much stronger person.”
– Rita Mero
I love what you have written here. It’s the ‘chipping away’ that will get there in the end, the sparks that will ignite the flame, till the fire of acceptance and action is blazing and unstoppable. Sometimes, with all the writing and reading and researching and longing, one can feel that we’ll never get there.
But the romantics amongst us never lose hope. All major change, across centuries, has taken enormous effort. But we know are not alone, we can link arms metaphorically and really succeed. Ripples are good, we never know how far they travel or who they reach. Very delightfully surprising sometimes!