Post-Retinoid Sexual Dysfunction (PRSD) Petition
There are long-standing reports of sexual dysfunction linked to the use of isotretinoin, a retinoid drug used in the treatment of acne. FDA and MHRA received the first reports of sexual dysfunction involving isotretinoin in 1983 and 1985 respectively, and according to a publication in The Lancet, Roche had received 150 reports of problems affecting the male reproductive system by 1994.
Following an EU review in 2017, the drug label was amended to warn of problems getting or maintaining an erection, and lower libido. It also includes the ominous phrase:
“Most of the unwanted effects of Isotretinoin will disappear when you stop treatment.”
These new warnings were long overdue. It took 34 years after the first report to FDA, 32 years after the first report to MHRA, and at least 23 years after the drug company was notified of the issue, before a warning was added.
As a general point, this is at odds with a claim made by Dr Sarah Jarvis in 2016 on Victoria Derbyshire’s BBC TV program, when speaking about the literature that comes with antidepressants. Dr Jarvis is a GP who is often used by the BBC, and was awarded an MBE in 2018 for services to general practice and public understanding of health. Dr Jarvis said:
“What the companies have to do is, they have to include every side effect that anyone has ever described. Interestingly, sometimes somebody’s on a tablet… something goes wrong… they get a symptom… they report it… that has to go into the leaflet. It might actually not be anything to do with the tablet.”
This is nonsense, but unfortunately people believe doctors when they make these types of claims, particularly when it’s broadcast on national television.
New petition
In addition to sexual effects while on treatment, there have also been reports of isotretinoin causing an enduring sexual dysfunction which remains after withdrawal of the drug, or in some cases appears within days of stopping.
Someone who suffers from this long-term issue recently contacted us. He was seeking help in opening a dialogue with FDA and wanted to know if we had any thoughts or advice. US drug labels for isotretinoin still don’t contain any warning at all for sexual effects.
He had been exploring some of the online data from FDA and noticed something interesting. Within the age group 12-17, isotretinoin was the most reported drug for the term “erectile dysfunction”. There were 31 reports for isotretinoin against a total of 97 reports for all drugs. To put this into context, within the same age group there were only 19 reports of erectile function for all SSRIs and SNRIs combined.
After a brief discussion, we agreed the best way forward was for us to submit a Citizen Petition. This is an official process set out by FDA where requests of this kind can be made by individuals or organizations, including those outside of the US. FDA helpfully provide details on their website of how the document should be formatted and worded, as well as instructions on how to upload the petition. Earlier in 2018, we requested warnings for post-SSRI sexual dysfunction (PSSD) and persistent genital arousal disorder (PGAD) to be added to SSRIs and SNRIs, so we were familiar with this process.
Citizen petition: Sexual side effects of isotretinoin has now been submitted to FDA. Anyone who wants to add a supporting comment can do so by using this link and selecting the “Comment Now!” button. Note that it may take a while for FDA’s administrators to process your comment and for it to appear on their website.
The data
The petition includes data from FDA and MHRA which was sourced from their online portals. These are publicly accessible and can be found here:
FDA Adverse Event Reporting System (FAERS)
Both systems have their limitations, although FAERS allows more sophisticated filtering and can therefore provide a greater level of detail. Neither of them include data on the number of cases where reactions persisted after the drug was stopped, or where the reaction occurred upon stopping.
There are 27 main reaction categories. In FAERS, these contain the specific reactions, whereas MHRA’s online system has an additional level of sub-categories in between. If you plan to explore these systems, be aware that some of the reactions aren’t necessarily where you would expect to find them.
There is a “reproductive system and breast disorders” category which contains most of the sexual issues. However, premature ejaculation and problems with libido and orgasm are listed under “psychiatric disorders”. Abnormal semen analysis and problems with testosterone can be found under “investigations”.
How many persistent cases?
In the SSRI/SNRI petition that we submitted earlier in the year, we cited correspondence from MHRA which detailed the number of SSRI cases where the reaction persisted after withdrawal of the drug. While it might seem a reasonable idea to request the same information for isotretinoin, the issue is slightly more complicated than it first seemed.
MHRA confirmed that up to January 5, 2018, they had received a total of 1475 UK spontaneous suspected ADR reports of sexual dysfunction associated with SSRIs. Of these, 309 indicated that the sexual dysfunction persisted after discontinuation of the drug, and in 963 cases it was unknown whether the reaction continued after the drug was withdrawn.
Since we submitted the SSRI/SNRI petition, we’ve seen further correspondence from MHRA which listed the individual reactions that comprised those figures. The list was very comprehensive and included a full range of sexual and genital issues. The problem is that many of them aren’t part of the enduring sexual syndromes that we are investigating, and more importantly they would be less likely to persist after the drug has been stopped. These included a range of fertility and semen issues, increased libido, retrograde ejaculation, nocturnal emission, priapism, hypersexuality, and others. By including these reactions, it potentially reduces the percentage of persistent cases and obscures visibility of syndromes like PSSD. This issue applies as much to isotretinoin as it does to SSRIs.
At the moment, we have no data on the number of reports to MHRA involving persistent sexual effects linked to isotretinoin. However, this may be something we can look into in due course, if we can find a way to resolve the above issue.
There are also a number of reaction terms which are essentially meaningless without further details. Terms such as orgasm abnormal, penis disorder, male orgasmic disorder, female orgasmic disorder tell us nothing about the specifics of the problem. For example, “orgasm abnormal” could mean difficulty achieving orgasm, or it could mean a qualitative difference in orgasmic sensation. “Penis disorder” is equally vague.
There is probably a wealth of detailed and useful information available in the reports to FDA and MHRA if they actually investigated. Unfortunately, there is little evidence that regulatory agencies do anything more than simply collect the reports.
Comments
Leave a Reply
Follow us
The horror of this is that the mostly young people who are prescribed this drug for their skin problems (acne or psoriasis) do not associate it with sexual dysfunction. There are no explicit warnings on the packet, despite a group of bereaved parents begging the MHRA at a meeting with our MPs, and chaired by Norman Lamb and Earl Howe, in Parliament to put the information in red on the outside. People don’t read things written in red, said the complacent but irritated MHRA representative, nor do they notice important things written in hyroglyphics
We are sure that of several of our youngsters ended their lives after taking these meds, because they feared, in isolation, that maybe they had lost their manhood and it is a terrifying realisation. They ended their lives possibly partly due to this, partly due to akathisia and other side effects. They were never warned about this when they were prescribed the drug by their dermatologist.
Further to your call, over on David’s blog, regarding All Souls’ Day on Nov. 2nd., may I suggest that we repeat last year’s vigil and send photos and comments to Rxisk’s Facebook page ( if acceptable) since we all seem to be busy at the moment. A ‘repeat’ is always better than a ‘no show’ in my book!
HALLOWEE’N
HAVE YOU CHECKED THE CHILDREN?
by
Kristina Kaiser Gehrki
https://fiddaman.blogspot.com/2018/10/when-stranger-calls-part-one.html#.W9nnZfZ2szM
Kristina Kaiser Gehrki is a public health and safety advocate. She holds degrees in strategic communication, journalism and education, but feels our most important knowledge stems from personal experience. Her teenage daughter, Natalie, died a prescription-drug induced death after suffering SSRI adverse drug effects that were undiagnosed by her doctor and improperly treated with SSRI dose increases.
What a gripping, frightening and tragic Part 1 of Kristina’s findings this is. As she says, the UK are fast falling into the same trap and that is exactly where I felt we were heading when it was first announced that mental health watchdogs were to be introduced into our schools. Once more, there will be money for the ‘top layer’ who will be involved in working with pupils referred by schools. Who will be deciding who needs a referral though? The poor classroom teachers and additional needs coordinators ( on normal teacher’s pay, with, probably, a class of their own to cater for plus overall responsibility for ‘additional’ needs for the whole school).
How will they be compensated for this extra burden when every school is being squeezed to within an inch of survival due to lack of funding coupled with rising costs? They won’t be – this will just be an extra box to tick and, probably, another target to reach! Children need TIME to BE CHILDREN – to be listened to, to follow by good example, to enjoy finding things out and learning from mistakes. In the main, most of this has already disappeared and pupils are seen as ‘members of an excellent centre of learning’ simply by their achieved grades ………… but what of those who fail to make the grade? – well, how handy, stick them on the ‘in danger of MH problems’ list and that’s the problem solved. Oh how blind we have become to the individual ‘potential’ of each and every youngster that it is our duty to nurture!
Truth or Fiction: What are Parents to Believe?
This post is the second in a series, from Kristina Kaiser Gehrki, that started with “When a Stranger Calls.” It explores the active role pharma-funded “patient advocacy” organizations play in creating and delivering school-based mental health education targeting children.
https://fiddaman.blogspot.com/2018/11/truth-or-fiction-what-are-parents-to.html#.W-9AmOhKhdg
I raised my hand and mentioned akathisia, serotonin toxicity and the FDA Black Box suicide warnings on all SSRIs. I shared the RxISK.org website where adverse effects are reported by actual users. The instructor went over to his laptop and accessed the RxISK website. He then returned to the lectern and shared with the class the Walgreens pharmacy website. He said parents can learn more about individual drugs on this website, adding it was “more reliable” presumably because it was from Walgreens. I replied that I had nothing against Walgreens. (My daughter was a college freshman and worked in the Walgreens beauty department at the time of her death). I pointed out that the Walgreens website likely only contains the drug info provided by drug makers and not by actual drug consumers. If parents look for information about Zoloft on the Walgreens website the instructor provided, they will not learn about akathisia. Further, the FDA Black Box warning is not readily apparent on the Walgreens Zoloft homepage and users must click an additional link to find this warning. Parents and teachers will also not find akathisia info on the CHADD and NAMI websites the FCPS conference instructors praised as valuable resources.
Thoughts? Heather?
‘it is the closest thing to a cure and the benefit is usually startling and gratifying’.
Letters page
Daily Mail
Good Health
Ask the GP
Dr Martin Scurr
https://www.dailymail.co.uk/health/article-6330719/ASK-GP-lost-three-stone-without-trying-just-getting-older.html
Q.
My grandson was diagnosed with acne at ten, and prescribed Zineryt lotion and soap, which, until recently, kept breakouts at bay.
He’s now approaching 12 and the spots are becoming more frequent and quite distressing and embarrassing for him. I understand acne is a sign of the hormonal changes of puberty, but he has otherwise not a sign of it on his body. I worry he will be afflicted emotionally like his father, who had it for seven years.
Sheila Harding, Anglesey.
A.
The psychological effects of acne can be damaging and long-lasting. Acne affects more than 80 per cent of those aged 12 to 15, often persisting into adult life.
It is an inflammatory condition involving a number of factors, including increased sebum (skin oil) production, an increase of keratin (fibrous) cells in the pores and the bacterium called Cutibacterium acnes.
This results in spots which typically affect the face, back, chest and shoulders. The Zineryt your grandson uses is a solution containing the antibiotic erythromycin, and so far has been effective by reducing the levels of bacteria.
However, the bacteria inevitably become resistant, which is why antibiotics (such as Zineryt) are usually used in combination with other agents (e.g. benzoyl peroxide, available without prescription in a lotion or cleanser) in order to limit the emergence of resistance.
Antibiotics also work well with topical retinoids, which, derived from vitamin A, act by removing the excess skin cells that tend to clog the pores. They are available as creams, lotions, or gels.
It may be that the time has come for a more aggressive approach.
Possibly a change to an oral antibiotic of a different type might be of value — and I would suggest this is combined with benzoyl peroxide or a retinoid product — limiting the use to six months in view of the possibility of bacterial resistance occurring.
In clinical studies, the benefit of such a combination was that overall spot counts declined by 60 per cent after three months.
The antibiotics most commonly used as an oral treatment for acne are the tetracyclines (such as tetracycline, doxycycline, minocycline) — a different class to the active ingredient in your grandson’s Zineryt.
With more severe acne — where you have pustules (spots with pus) and nodules (lumpy tissue) — oral retinoids may be considered: isotretinoin (perhaps better known by the brand name Roaccutane) can be prescribed only by consultant dermatologists and will be used only in those who don’t respond to other therapies, such as oral antibiotics.
There is the potential for troublesome side-effects, including extreme dryness of the skin, cracking of the lips and eye redness, all of which are transient and settle once the drug is stopped, after the acne has abated.
The drug can also alter blood cholesterol levels and liver function, so patients must undergo routine blood testing.
Another concern is a possible link with depression: careful counselling and monitoring of patients is therefore essential — which is why only experts can prescribe it.
This type of treatment was not available when your grandson’s father had persistent acne, and it may be appropriate for your grandson: it is the closest thing to a cure and the benefit is usually startling and gratifying.
This is therefore something to be discussed with his GP, as specialist referral is necessary.
Annie, I went to school with Martin Scurr’s sister, she is someone, also a doctor, for whom I have great respect. I remember her little brother Martin when we played together at her home as children. I don’t want to be critical here but, yes, RoAccutane is startling in many ways. Martin’s response is careful, conscientious and measured. I would expect nothing less from him. There’s a lot here he doesn’t say, but probably knows. That the cure may appear startling and fast, but only for the lucky ones epigenetically suited to tolerate it does the cure last. We have many examples in our group of bereaved parents, of their young initially responding well, but then relapsing to much worse acne, (as my son did) needing more courses, leading to more neurological risk, leading to suicides. Martin seems to me to be playing safe, as most media doctors must (so they or their paper don’t get sued) and he’s taking the optimistic view. Acne is a horrible thing to suffer, he’s right there. But until we get RoAccutane taken off the market, no one will do any serious work on finding a REAL cure for it, which is safe. And if there’s even one out there now, it has no chance of being well marketed because Roche have so much power than no one can usurp it. No one will listen when careful thoughtful doctors like Martin promote it, albeit as a last resort.
And also, let’s not forget, RoAccutane is relatively cheap and for many a quick fix. So, with long waiting lists for dermatologists, a prescription for this will get the youngster off their books, back to liver monitoring by the GP, and if the awful mental side effects occur, which for so many they do, then the GP ships them off to the psychiatrist, they are classed as psychotic, and their future fate is sealed. Off into what we’ve termed The Perfect Circle on RxISK. Counselling can’t help. If the mental and physical damage is done, sometimes irreversibly ( including lack of sexual function) there’s not much comfort in talking about it. All the young person will want to do, whether free of acne or not, is to get their brain working right again and their libido back. And sometimes they never can. It’s a lottery. This drug sucks all the joy out of people’s lives, they lose the ability to feel,happiness or excitement. There are other ways to improve the state of ones skin and balance the hormones, the latter will normally balance out with time anyway.
So, Martin’s response is a classic one. Soothing but with a gentle air of caution. No wonder young people feel reassured and trusting. We all did. And so many of us now are furiously angry with ourselves that we didn’t look beyond the complacency; if we had, we might still have our offspring alive and kicking.
Unless you’ve already done so, Heather, I feel that maybe you should contact Dr Martin Scurr with information from your group of parents – information which may well make him think twice about how he paints the ‘benefits’ of RoAccutane. You have been very fair in your appraisal of his reply above but I must say that when I read it, I felt that the message was simply “Use with care”. However, from reading your previous accounts I feel that ‘use with care’ may well be leaving things too open to individual judgement and can often be too late to save a youngster’s life.
When we gave out your books in exchange for donations to Rxisk Prize Campaign at our mums and tots group, one of the helpers was horrified when told about RoAccutane – and is fairly sure that her grandson was put on it. “But it’s cleared up now so he’s off it”, she explained. Two weeks ago she spoke to me again about her grandson. The acne is returning – and there are concerns about his mental state! She has talked things through with her daughter from our first mention of RoAccutane and has again reminded her of the possible consequences, should this be the drug that her grandson is likely to go back on to again. It’s certainly one that has been given to him by a ‘professional’ rather than his GP – so probably by a dermatologist?
This particular lady is hoping to bring the subject up during our meeting next week. Whether it’s RoAccutane or not, it seems to be one that can cause real problems of a similar nature. Thanks to your informative comments, Heather, I hope that we may have saved one family from a journey down the all too familiar route to despair.
Mary, I have shared all about RoAccutane with Martin’s sister, my old school friend, and indeed my whole class from our grammar school as we have a ‘group email’ way of being in touch. Some respond, others, sad to say, some of the medics in there, ignore it. I could try to get in touch with Martin directly, but maybe better privately through his sister. I don’t mean to be negative but I can guess already at his response, he will be sorry about our tragedy, but will say that it’s very rare. It isn’t, but till Coroners report back all deaths by suicide where people have in the past taken RoAccutane, we won’t get accurate figures. But, think on this—— MHRA admits that on average ONE YOUNG PERSON EACH MONTH DIES BY SUICIDE AFTER TAKING ROACCUTANE AT SOME POINT. (They told us this in a Westminster meeting in front of Norman Lamb and other assembled MPs and Earl Howe).11 in the year at least. And this is their conservative figure. And their representative also told us, without batting an eyelid, that this was very sad but it was collateral for all those who had been prescribed RoAccutane for their acne, and the acne itself could also make them suicidal. So they were saving lives…. so, what can one counter that with? And Government endorse it. I rest my case.
I am very sorry for your parent. It may be now that the acne will get worse, more courses prescribed, by the third one, major damage will be obvious, and I’m afraid the mental problems may never recede totally, even if he’s stopped already. We watched our cheerful, engaging, utterly delightful son, transformed into a paranoid, anxious, totally different person. Try as we might, I promise you we were completely exhausted with the trying of EVERYTHING before he died, with NO medical support or admission that the RoAccutane had done this, later compounded by Seroxat, Risperidone, Stelazine, escilatropram, Citalopram, and masses of others, the final being Sertraline and Olanzapine. He noted all this, he saw we were on our knees alongside him, trying to understand, trying to help. This is why he felt by dying he would give us peace. How terrible is that. A prescribed drug, endorsed by nice doctors like Martin Scurr, allowed by Government, putting so many young through utter hell. Leaving broken hearted but furious families. Plagued themselves then by stress related poor health, and not allowed to talk about what has happened in the media.
So, suggest to your parent that adding SSRIs etc can make things worse. Switch to very healthy diet, water at every meal, lay off fats, chocolate, cut down milk, do research, note down what helps. Get her son to take responsibility optmistically for his OWN SKIN. He can do it. Get focussed on it, and give it all he’s got. And his mum needs to tell him that this WILL work, even if it takes time, and it WILL pass. Hopefully he’s caught the scourge of RoAccutane in time.
One month Accutane 20mg I have lost my erection and I am having weak legs. My face is still covered with acne. But it’s fyn I don’t have problem with acne anymore all I want now is my manhood 😭😭.
Would like to get an update on your story, hoping it’s a good one!
My grandson was prescribed Accutane by a Dermatologist for cystic acne at age 13. His erectile dysfunction stayed hidden for awhile due to his lack of understanding about erections, sex in general, etc… He’s 17 now and cannot achieve a full erection. He says he cannot feel anything when he attempts to masturbate. He finally told me he’d had this problem since age 13-14, coinciding with his Accutane use. He’s tried Cialis and it does not work for him. I’m heartbroken for him… he’s a very handsome boy, athletic and a good kid. He didn’t deserve this, and had I known this was even a SLIGHT possibility, I would not have allowed him to take it. He’s very depressed and I feel he could harm himself in the future. This issue MUST be taken as serious as other Accutane/Isotretinoin issues such as birth defects, etc…The public must be made aware of Accutane use and the real risk of ED, Depression, and Suicide in healthy young men. Why is there not a class action lawsuit in the works?
I agree with the last part. When I reported my SSRI symptoms, I made it very clear that I suffer from SSRI-induced emotional blunting / blocked feelings. What do I find when I look for my case in the database? Feelings abnormal
They even aren’t able to save the correct symptoms.
A really good example is Paroxetine
https://info.mhra.gov.uk/drug-analysis-profiles/dap.html?drug=./UK_EXTERNAL/NONCOMBINED/UK_NON_000191079758.zip&agency=MHRA
Psychiatric Disorders 9509 Fatal 67
https://rxisk.org/top_100_reactions/Paroxetine/
top 100 reactions to Paroxetine
The MHRA and CHM encourage the use of data from the Yellow Card Scheme in research and for publication, but wish to ensure that the limitations of interpretation of the data are made clear.
I don’t see RxISK having any limitations of interpretation of the data …
Emotional anaesthesia is a big component of PSSD, and can be almost as unpleasant, and for some people it maybe even more unpleasant than the sexual aspect of PSSD.
Heather says it correctly when she states you can no longer feel happiness or excitement.
Before PSSD I used to get excited before going on holiday, doing a hobby I enjoyed, or watching a film at the cinema etc. Since developing PSSD I don’t really have an emotional response to much of anything. It sucks the joy and pleasure out of life.
Living with PSSD is like living in a grey world with the colour drained from it.
Or like having your TV changed to black and white, where before you could watch TV in full colour, and your enjoyment is greatly lessened because of it, and you are told theres a good chance you can never ever watch TV in full colour again, even though everyone else can; and there is nothing you can do about it, and no one really cares that you are stuck in this greatly diminished existence.
It feels to me there was a whole spectrum of emotions that were wiped out after i took that first Citalopram tablet, and they have never come back. Occasionally they flicker on for a few seconds in my brain in a weakened intensity to how they used to be, and I remember how I felt before PSSD, just for a brief moment.
I had even forgotten I had used to feel certain emotions, or that certain emotions even existed, until they flickered back on briefly for a few seconds, and then disappeared again.
What I wouldn’t give to have my full spectrum of emotions back. Life really did feel so much better before PSSD.
Life with PSSD is NOT living in the way nature intended. I would argue that it may not be really living at all!
You’ve got it in one Spruce, emotionally, you see the TV in black and white whilst everyone else gets it in colour. If everyone was ill, ‘all in it together’ it would be bad, but not as bad as being locked into this and surrounded by complacent denial from those who DO know but won’t admit.
Life can be tedious and mundane, but it’s those moments of JOY that uplift us, keep us going, give us hope. When you suck joy away, it’s like encountering the Dementors in Harry Potter, the most scary thing there is. Olly loved those books, he read them avidly, even at Uni. His joyful life was blitzed by RoAccutane in 2001, he worked harder and harder to gain joy again for 11 years, through helping people, working creatively, but the sheer unadulterated joy never returned. And however much we have beaten the drum over the last 6 years since his death, people like Mary’s friend’s grandson and yourself, (with PSSD caused by SSRIs, SNRIs and RoAccutane) on this post, report damage daily.
And nothing changes. Well, not much. If EVERYONE was suffering this, NO ONE would be, because up with this they would not put. Evil flourishes when the MHRA does effectively nothing, despite soothing weasel words. This is why the RxISK AKATHISIA recent post about causation from 500+ drugs, is SO good. Because it is showing that we ARE all involved, or we are very likely to know someone who is. So we must keep on telling the world, over and over again.
The acne drug that can steal young men’s virility: Tens of thousands are prescribed Roaccutane for their skin. But now there’s disturbing evidence of an embarrassing side-effect for men like Ed that can last for years — and leave them suicidal
Ed Henthorn has experienced devastating side-effects of acne drug Roaccutane
Active ingredient is isotretinoin which works by cutting amount of oil in the skin
But it can also cause anxiety and panic attacks, plus depression and even suicide
Evidence suggests it may also be responsible for permanent sexual dysfunction
By Jonathan Gornall For The Daily Mail
Published: 22:15, 26 November 2018 | Updated: 10:18, 27 November 2018
https://www.dailymail.co.uk/health/article-6431453/Thousands-prescribed-Roaccutane-theres-disturbing-evidence-leave-men-suicidal.html
As David Healy, a professor of psychiatry at Bangor University, who is studying the impact of isotretinoin, explains: ‘Erectile dysfunction is psychologically devastating to young men and, without doubt, does lead to suicide.’
There is almost certainly a link between sexual dysfunction and suicide in men, says Professor Healy.
The review was ‘a whitewash’, says Heather Roberts, an author and illustrator from Bromyard in Herefordshire, whose 32-year-old son, Olly, killed himself in 2012 — he’d been prescribed the drug when he was 21 and lived with chronic anxiety for the next 11 years.
Heather and other parents feel their views about the risks were ignored.
Last month RxISK, an independent drug safety group based in Canada, called on the U.S. drug regulator to add a boxed warning to packets of isotretinoin to inform patients that ‘sexual side-effects can sometimes persist indefinitely after discontinuation of the drug; they can emerge on treatment and remain afterwards, or emerge or worsen when the drug is stopped’.
Weasly words indeed Heather.
This is how I sometimes feel living with PSSD year after year, seeing little improvement, and battling regular thoughts of suicide.
https://youtu.be/iPO1P2gc71A
ABOUT PSSD!
Hello, Dr. Healy! I have elevated progesterone, so you can pay attention to the effects of progesterone, especially since its increase disables libido, I don’t think it is crucial, but still …
In addition, I think it is necessary to pay attention to oxytocin, it just depends on him everything that disappears when taking SIOZS-feelings, emotions, a sense of orgasm. there is also antidiuretic hormone (vasopressin), which is also responsible for attachments and cravings.
What about the gut health connection? There seems to be hope lately regarding the gut/brain connection with PSSD. This is such an awful thing. I’m 4 years in now with no windows. I’m worried because whenever I’ve read about recoveries in PSSD, they gradually got better year by year with strong pre PSSD like windows. That’s not the case with me so far. Does anyone know of any cases of extreme pssd woith anyone recovering years out, no windows beforehand?
Spruce, I am sorry about what you are going through. Heather, I am sorry about your son. I’m sorry this happens to people.
I just want all of this to be better for all of us.
Don’t give up hope Sarah. I have actually heard of one person on benzo buddies called Mr B who took 12 years to fully recover from protracted withdrawal from Benzodiazepines.
He also had a host of sexual problems including loss of libido and genital numbness (he took the SSRI paroxetine as well as benzodiazepines) and the sexual problems took the whole 12 years to fully resolve.
He started getting his first windows at 10 years out, and then for the next two years he had windows and waves on and off, and then fully recovered in the 12th year off.
He says recovery felt like being reborn, and he now appreciates life so much more compared to before this all happened.
But he also said the 12 years of going through protracted withdrawal was the hardest experience of his life, and at times it nearly broke him, and he often felt suicidal.
Below is the link to his success story. I have personally messaged him, and he has told me the genital numbness took the whole 12 years to completely go away.
http://www.benzobuddies.org/forum/index.php?topic=178596.0
Wow, Spruce, this must be very welcome news to you and others who are waiting in hope. Twelve years are, indeed, a long time to have to wait but I suppose, like everything else in this game, every individual’s waiting time will be different. It seems to me that everything to do with the use of these drugs, if it turns nasty on you, takes an absolute age to get you anywhere. It’s the greatest test of patience that I’ve ever come across!
It is a great test of patience indeed Mary H.
Healing from PSSD can feel like waiting for a photon of light to travel from one end of the universe to the other. You have to find within yourself a blind faith that it will all come to an end one day.
The part where Mr B starts talking about how his windows didn’t start until the 10th year off are on page 8 of his success story.
Hi, I’m experiencing sexual disfunction after stopping accutane 1 and a half months ago (after taking it for just over a month). Trying to keep a positive head but ofc is a very hard to thing to be going through. Do any of you have a general idea how long it’ll take me to recover as I took nowhere near the whole course?
I’ve had two windows of about 4 day in this time where it’s felt fine but the last three weeks has been numb and a lot of ed.
The seriousness of the effects of these drugs should not be underestimated. Many people are changed for years by this condition and other overlapping ones. There should be a responsibility to not only warn people but to ensure that nobody else suffers unnecessarily.
Accutane destroyed my life. I took it 11 years ago. So much time after it, I still suffer erectile dysfunktion. Life could have been so beautiful without this drug. Now Life is difficoult. I went to doctors, nothing worked and Im just 25 years old…
How much time did you take and what dose?
What are your symptoms? Any besides erectyle dysfunction?
I took accutane at 16 years of age. Life has not been the same again. I don’t even know why doctor would prescribe it at such young age. I am 28 now. I have the worst case of ED. I suffer from emotional problems. I feel sad and gloomy most of the time. I try to avoid getting into a relationship. Accurate destroyed my body. I’m gonna have to live with this condition till I die. It’s just pure sad.
Hang in there. I took it in 1992/93 and also lost my sex drive. It was very healthy before that. I have not given up hope and enough people are suffering and everyone is searching for answers. I think there are some interesting hints.