My rendez-vous with Roaccutane

Hi everyone, new member here to put my Roaccutane horror story in the mix. I’m going to run through this set of questions and then I’ll go right into it, so brace yourselves.

Where are you from (country)?
United Kingdom

How did you find this forum (Google searcWAh – if so, what search terms? Via link from a forum or website – if so, what page? Other?)
After reading a recent BBC news article about Roaccutane, I Googled the name of one of the young men who was quoted talking about his (horrific) experience, and here I am.

What is your current age, height, weight?
26 years old, 5’10", 60kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Isotretinoin/Roaccutane

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
40mg/day

What condition was being treated with the drug?
Acne

For how long did you take the drug (weeks/months/years)?
I can’t remember but it must have been several months, possibly up to a year.

How old were you, and WHEN (date) did you start the drug?
I was 14; according to a copy of a letter I was recently able to obtain writen by the consultant dermatologist overseeing me, I took my first pill on 28th April 2007.

How old were you when you quit, and WHEN (date) did you quit?
15. Not sure of the date.

How did you quit (cold turkey or taper off)?
Can’t remember, but I expect I would’ve followed whatever the advice of the dermatologist was.

How long into your usage did you notice the onset of side effects?
I can’t remember exactly, but it was only after finishing the course that it truly dawned on me that I had some serious problems.

What side effects did you experience that have yet to resolve since discontinuation?
A class: Impotence, no libido, terrible mental health. B class: stunted growth, muscle wastage/weakness, frequent urination, shrunken penis, watery, weird-smelling ejaculate. Z class: clear skin… hooray…

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
Loss of Libido / Sex Drive
Erectile Dysfunction
Complete Impotence
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate
Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
Emotional Blunting / Emotionally Flat
Difficulty Focusing / Concentrating
Confusion
Memory Loss / Forgetfulness
Stumbling over Words / Losing Train of Thought
Slurring of Speech
Lack of Motivation / Feeling Passive / Complacency
Extreme Anxiety / Panic Attacks
Severe Depression / Melancholy
Suicidal Thoughts

Physical
Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
Muscle Wastage
Muscle Weakness
Joint Pain
Dry / Dark Circles under eyes

Misc
Prostate pain
Persistent Fatigue / Exhaustion
Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
Increased hair loss
Frequent urination
Lowered body temperature

Other (please explain)
Psychotic symptoms.

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
I took Viagra for several years as a teenager, which gave me the ability to maintain a solid-enough erection to have sex, albeit with no corresponding libido, sensation or pleasure. Discontinued.

Later, I took up mindfulness meditation and practised daily for a few years. No impact on the sexual symptoms, worsening of my mental state. Also discontinued.

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?

I only had blood tests done after discontinuing the drug; was never given a full run-down of the results, beyond being told everything was fine and my Testosterone was “on the high end of normal”.

Anything not listed in the above questions you’d like to share about your experience?
See full account below.


I’d like to begin, if I may, with a short musical number. Sing along if you know the words:

Now this is a story all about how
My life got flip-turned upside down,
So I’d like to take a minute,
Just sit right there,
I’ll tell you how I got caught up in a Roaccutane nightmare…

…ahem, right, so I was given Roaccutane at age 14 for my acne, which admittedly was pretty bad. I finished the course at age 15, but didn’t immediately notice any lasting effects, except for the fact my skin was completely clear.

Hallelujah, Roche be praised, another Roaccutane miracle!

The end? Ho, no no.

When I turned 16 I got my first proper girlfriend. We kissed a few times; I remember getting on the bus home from school and sitting there beaming, feeling so light, so happy. Then naturally we wanted to take things further. She came round to visit me in a place I was house-sitting, we were all alone, the time was right. I took my trousers off and then… nothing. Barely a twitch down there. Well that’s weird, I thought, must be the couple of cans of beer I had to relax me, or something.

Then, the next time, it happened again. And then again. And again. At which point it dawned on me I couldn’t get an erection at all, at any time.

I started panicking. Thinking back, I realised I hadn’t been getting erections for quite a while. I’d still been masturbating, but the erections hadn’t been there, and it just didn’t feel the same. Somehow I hadn’t noticed the shift when it happened; I guess I was really just at the beginning of puberty and things were changing all the time anyway, so I didn’t have a clear sense of what was normal.

Looking for answers, I went to see my GP and was told it was all in my head, just normal teenage nerves. He gave me a one-off prescription of Viagra, just something to help me get over this little hump.

The Viagra allowed me to perform, but that’s all it felt like, performance. I had no sensation and wasn’t able to reach orgasm at all. I just thrust in, out, all about like some kind of brainless sex robot, wearing the grimace of a man doing his duty, for Queen and country, that sort of thing. Four pills and four passionless shags later, the prescription was used up, and despite the doctor’s assurances, my dick returned to its state of slumber, like a zombie returning to its grave after a night’s marauding.
So I went back to my GP to refill the prescription.

What followed was a nightmarish 18 months where I continued taking Viagra to have sex with my girlfriend, but without telling her. The secret grew and grew and it was eating me alive. But I had no choice. I was a frightened, confused young man, still a boy really, plunged deep into a nightmare I couldn’t understand. Telling my girlfriend, my friends, or anyone that my dick wasn’t functioning wasn’t an option.

Looking back, I can see how the various doctors I turned to for help pressured me into disbelieving my own experience. I knew, deep down inside, that something was very wrong, that something had happened to me, but every doctor I saw, from my GP up to the sexual health specialists I was eventually referred to, flat-out refused to consider that it could be anything other than psychological. I was a young boy, my blood tests were normal, that was good enough for them. For all their dutiful waffle about “side effects”, I suspect it’s a rare doctor who will seriously entertain the possibility that a prescription drug could be the primary cause of a patient’s health problems. In the words of Upton Sinclair, it’s hard to get a man to understand something when his salary depends on him not understanding it.

Of course, I wanted to believe them. I wanted to believe it was in my head, then maybe I could control it. But my body, my intuition, was telling me something very different. I had been a normal, horny teenager. Now, I couldn’t get an erection at all. It wasn’t just during sex; I didn’t get erections at night, in the morning, while masturbating, not ever. I would make sure I stressed this to every doctor I saw, saying are you sure it’s just psychological, because it really is all the time, but the response was always the same: the doctor would just smile and say, yes, yes, don’t worry, it’s fine, you’re fine, there’s no problem.

I can remember mentioning Roaccutane in one of these conversations, but barely had the word left my lips before it was brushed away, dismissed and forgotten.

Don’t be silly, little boy, the problem’s not us, it’s you.

My girlfriend and I broke up shortly after I started at uni. I was heartbroken, but also relieved; as I said, the secret had grown to be unbearable. Now here I was, at age 19, newly single, living away from home for the first time, at the outset of what seemed like a whole new life. It was easy to believe things could be very different in my future, I could leave all the darkness of the past behind me. I made a resolution to myself that I would stay away from any further sexual encounters until I’d solved this problem for good. I did not want to take Viagra ever again; I’d come to despise it, for all it stood for. I was ready to tackle the root of the problem, and I felt confident I could.

The next few years I was locked in a very private battle, trying to figure out what I was doing wrong, because as I say I’d internalised this idea that it was something I was doing to myself. I got the idea that it was something to do with masturbation; I experimented with frequency, masturbating more, masturbating less, even abstaining from masturbation altogether. When each of these methods failed, I told myself it was because I’d overlooked some key detail, and I’d begin again. Each new thing I tried was more arcane and outlandish than the last. Masturbating only on Tuesdays when it was a full moon, that sort of thing. Well not exactly that, but you get the picture. Still, somehow I was always able to convince myself that this time it would work. I don’t know where I got such conviction from, looking back it seems pretty crazy, I mean I effectively pulled these ideas out of thin air, but I guess it functioned to protect me from a reality I wasn’t ready to face yet.

In my third year of uni, exhausted by all this mental scurrying, I collapsed into a deep depression. I’d had periods of depression through my second year as well, but this was different. There wasn’t a glimmer of hope left. I wanted to die. My friends and family rallied round me. Eventually, I confessed to my mum I was impotent; she encouraged me to see yet another specialist. I wasn’t hopeful but I guess I thought, what have I got to lose?

Just like all the previous doctors I’d seen, this specialist declared that my problem had to be psychological, on the basis of nothing more than a repeat of the same blood test I’d done already. His advice? I should take up mindfulness meditation.

Initially, I was flabbergasted at this. There I was with a body that felt like a wreck and I was supposed to believe the answer was some breathing exercises?! I remember meeting my mum after the initial assessment and breaking down in tears, feeling that if this is all that this supposedly world-renowned specialist in erectile dysfunction had for me, there really was no hope. But my mum talked me round into at least giving it a go. I agreed, once again, to suppress my instincts.

I devoted myself to mindfulness. Following a course recommended by the specialist, I gradually went deeper and deeper into the practise, to the point where I was meditating for 20 minutes a day, every day. I found a lot of value in the core idea of being present and detaching from one’s thoughts and feelings, observing them non-judgementally. For the first time in a long time I began to experience glimpses of lightness and peace. My sexual problems remained unaffected, but encouraged by the impact the meditation was having on my general wellbeing, I began to feel confident it was only a matter of time. And so, when our NHS-allotted 8 sessions were through, I expressed my heartfelt gratitude to the specialist and his consultant and went forth in the world, feeling once again that a new beginning was on the horizon.

Little did I realise I was stepping forward into a whole new nightmare.

I was at my parents’ house one day shortly after graduating and I picked up a book by a popular New Age author that was lying around. In the past I would’ve given this sort of thing a wide berth, but I guess I was feeling more in touch with my spiritual side what with all the meditation.

The central message was that there are no problems, life is really paradise, if only we are fully open to it. We only suffer because of the stories we tell ourselves in our heads. Reading this, I felt yes, it must be true. In fact, I was certain. The book triggered something in me; I guess it felt like a natural extrapolation from the ideas I’d been exploring in my mindfulness practice.

I grew very excited, euphoric even. This time I really had found the answer. Everything was going to be wonderful from now on. Life was bliss.

At a speed that astonishes me looking back, I totally reinvented myself. I became one of those obnoxiously positive people. My confidence rose exponentially. I was no longer the shy, self-conscious young man I’d been since my teen years. All doubt gone, suddenly I felt like I could do anything.

I made loads of new friends - the kinds of people I’d always thought were too cool for me - moved into a new place and started a new job working in a school, believing I had some special ability to help kids because I had The Answer.

Looking back, I can see that I hadn’t really overcome the difficulties in my life so much as dissociated from them. Anytime that I had a thought or feeling that I experienced as unpleasant, I immediately pushed it aside, believing that anything that seemed unpleasant was automatically untrue and could be discarded. In a sense, I was doing what I’d been encouraged to do by all the doctors who told me that I couldn’t trust my own experience. I’d drunk the Kool Aid, as they say. It was suicide in the guise of spirituality.

Needless to say, there was a price to be paid for all this. Despite my best efforts to obliterate my mind, it refused to go. I doubled down, becoming more dogmatic, preaching to those around me. I upped the meditation to at least an hour everyday. My personality grew increasingly manic; I started taking extraordinary risks, mistreating people, as if my actions had no consequences. I began to believe I was enlightened.

This climaxed in me taking LSD in less than hospitable circumstances. As I put the tab under my tongue, I distinctly remember thinking, it doesn’t matter if this turns out to be a terrible trip: even if it destroys me, even if I literally die, everything is alright in eternity. I had become utterly depersonalised. So obsessed with this abstract, philosophical idea of life as love, I’d lost the capacity to feel any love for myself, or care for myself in the most basic of ways.

The trip that followed was, indeed, terrible. It would be too much to go into all the details of what happened, but I was swallowed by a great darkness. In this darkness I had no free will, I was just a passive observer strapped to the rollercoaster of life, a rollercoaster that was running out of control. From having believed life was heaven, now I experienced life as Hell.

I was left shaken to my core. But I couldn’t immediately let go of my shattered illusions of enlightenment. They had been my whole identity and they were the only thing protecting me from the darkness. What that darkness was, I didn’t know, but I knew I had to avoid it at all costs.

Like when I was trying to solve the problem of my impotence back in Uni, I began playing games with myself in my head. I was trying to find a workaround, a way I could once again believe that everything was alright. Once again, this pushed me towards ever more bizarre, convoluted ideas; but whatever I came up with, none of it held fast, the darkness kept breaking through. Meanwhile, my life was rapidly crumbling around me. I had to leave my job in the school, my social circle was dwindling just as quickly as it had expanded. I was breaking down.

It reached a point where I couldn’t leave my room, I was so scared of the world outside. I would only go out maybe once every 24 hours, scurry off to the corner shop to buy some junk food, then return, praying to avoid bumping into my housemates or anyone else I might have to talk to.

One day the pain was unbearable. I just couldn’t solve the problem in my head. I couldn’t keep the darkness out. I was beyond scared. I took myself back to my parents’ house, the only place that felt relatively safe. I tried to watch some stand-up comedy on TV, but I couldn’t laugh, all I could think was that the comedian looked like he was made of plastic, like he wasn’t real. Everywhere I looked there was death. My parents came in the door and immediately I started screaming. I didn’t stop all the way to the emergency room.

The next morning I found myself in a psychiatric ward.

A survival instinct kicked in and I started putting on a show of having spontaneously recovered. Don’t mind all that awful screaming from before, I’m fine now, honest. My big fear was that I’d be forcibly given psychiatric drugs. Looking back, I realise this fear may largely have stemmed from my unconscious knowledge of what Roaccutane did to me, but I still think it was legitimate in its own right; having seen how zombified some of the other people on the ward were from their drugs, I think there’s a good chance that if I went on them I would have stayed stuck in wards like that for the rest of my life, never uncovering the truth of what had happened to me. I remember going into the TV room, where a fellow patient was slumped on the couch staring at the screen. When I asked him what he was watching, he said he had didn’t know. It wasn’t just that he didn’t know the name of the movie, he literally couldn’t tell me a thing about it.

After monitoring me for 5 days the ward staff decided, thank God, that I didn’t need to be sectioned, and I managed to convince my parents to let me leave, on the proviso that I would find another way to get help. My wish was to go down the road of psychotherapy. This was something, once again, I approached with naive optimism, believing it would help me to identify the error in my thinking that was making me crazy and that would be that, I’d be totally cured of all my problems.

Of course, the reality was quite different. After two years or so of therapy I was still suffering a great deal. I wouldn’t say it was unhelpful, though. I feel it gave me a lot both in terms of self-awareness and emotional strength. However, in all those two years I barely mentioned Roaccutane. The knowledge of what it did to me remained buried deep down, an unspeakable reality. I continued to believe that my impotence was psychosexual, in spite of making no progress with it.

After these 2 years, I decided it was time to try going back into full-time work. Because of scheduling issues, this meant the end of therapy. In our last conversation, my therapist told me she was encouraged by the progress I’d made, but concerned that we still hadn’t scraped the surface of what was going on with me sexually. I wasn’t particularly concerned myself; I felt I was on a path of healing and that, once I’d settled into my new job and moved into a new place, my sexuality would return in good time.

This was last November. The onset of Winter. After saying goodbye to my therapist for the last time, a feeling of absence arose in me. Since, as I say, I had gained a certain amount of emotional strength from the therapy, I didn’t feel I had to run away from this feeling. Winter, the season of endings, seemed like an appropriate time to explore it. I was curious; yes, it made sense to feel some grief at the loss of a supportive relationship, but this felt like it went deeper.

As I sat with the feeling over the next few weeks, I realised it reminded me of how I felt when I broke up with my first and only proper girlfriend.

I started working and it was going OK. I got along well with my colleague, we’d talk pretty freely about this and that. One day in early December, he mentioned how silver dental fillings contain mercury and have been banned in many places, including his home country. I was shocked by this. I had had a silver filling since I was a teenager and never had any knowledge of this. When I went home, I Googled it and found he was right. There was some debate about the health implications, with mainstream dentistry organisations predictably underplaying them, but other sources saying they could be serious.

I found myself welling up with rage. I felt invaded. Even if my dentist was on the side of those believing the fillings were safe, I felt he should’ve at least informed me there was a debate. I grilled my parents and they both denied remembering being present when the filling was put in.

The rage I felt was disproportionate to a tiny filling in my tooth, you may think. That certainly seemed to be what people around me felt. Well, yes, it was. The filling was a symbol for something else.

One morning before I left for work, my mum and I were in the kitchen (I was still living with my parents at this point). I’d woken up furiously angry about the filling again and I was letting her have it. Despite her repeatedly denying she was present when it was put in, I didn’t trust her. The conversation heightened, became even more fiery and emotional.

Then she lets slip that her greater concern is not the filling, but putting me on “that acne drug”.

Something clicks.

When I come back from work, I Google “Roaccutane impotence”. I come across a UK government-issued health warning from late 2017. The drug is now officially recognised as causing impotence.

The walls come falling down.


It’s been 5 months since that Google search. I’m still struggling with acceptance, still liable to go into flights of dissociation where I tell myself it’s all in my head and I was silly for ever thinking otherwise. That’s 12 years of habit for you, I guess. Of course, it’s important to be clear that it’s impossible to be certain about anything. However, there is knowledge and there is knowledge. On an intuitive level, I have always known that Roaccutane changed me. I’ve felt it in my in body and soul, a plain fact of my experience. It’s only on an intellectual level that I ever denied it.

In other words, now that I’m intellectually open to the possibility that Roaccutane did these things to me, I have an explanation that actually fits my experience, which in all these years of desperate searching, I never had before.

It’s painful, so incredibly painful. At least when I was deluding myself it was in my head, I had hope. Now, I’m not so sure. But still, I would rather know the truth.

Initially, I was hopeful that my mental health would improve in the light of this knowledge. Unfortunately, that has not happened yet; my mind is still a complete mess. I am aware, of course, that Roaccutane may have had some direct impact on my mental wellbeing besides just the impact of the trauma of having my sexuality suddenly taken from me at such a young age. So perhaps I shouldn’t set unrealistic targets about how mentally healthy I can be. I hope that as I continue to process and accept things my mental health can improve in certain ways, but I accept it’s hard for me at this point in time to know what that might look like.

I have noticed I’m starting to be able to let go of a lot of self-blame and self-hatred, as this realisation sinks in. That’s a relief. All these years I thought I was doing this to myself.

In terms of what I am looking for from this online community, I’m not sure exactly. I should say straight up that I’m not very hopeful about finding some magic bullet to undo the damage done by the Roaccutane, and I don’t have much of an appetite for experimenting on myself, I’ve done enough of that already. Maybe in time my views will change, but right now I feel I would have a hard time trusting in anything put forward as a potential cure. I’ve been hurt too many times by things that were supposed to help me: not just Roaccutane, but also mindfulness and most recently some very ill-advised dabbling in the occult, which I didn’t mention in my account for the sake of brevity but also made things considerably worse for me.

But just being able to finally share my story, speak my truth, feels good in itself. And to be among other people who’ve been through the same or similar. I feel very lonely at times, as if I live in a different reality to most people around me, even some of my closest friends. I’ve been initiated into a very dark side of life, a place where most people don’t want to go, and who can blame them?

Thanks for reading. I know it was very long, but once I started I just had to get it all out.

I put pills in my mouth
About seven or eight
And I yelled to my penis
“Go home, smell you later…”

-luckydevil

9 Likes

Damn that was a wild ride.

All these Accutane stories are insane because of the age they were taken at. Usually we get adult stories because you can’t take finasteride till you’re 18 so you don’t have as much sympathy for the users. But teenagers getting side effects and not knowing back then is crazy, now they make you sign alot of waivers and documents before you take Accutane so you have some knowledge.

4 Likes

Dear Luckydevil,

welcome to our community and thank you for your detailed account of what happened to you and what you had to go through. I am deeply sorry this happened to you, but now you have come to the right place.

I can assure you that what happened to you is not just in your head. It is becoming increasingly clear that drugs like Accutane (Isotretinoi), Propecia (Finasteride), Anti-depressants (particularly SSRIs) and many other drugs can cause persistent mental, physical and sexual side effects in predisposed people. This is also increasingly reflected in drug leaflets as you have found out. Unfortunately, for us this too late and, unfortunately, I can confirm that there is no magic bullet to treat this condition.

However, the admins and staff of this forums as well as some supportive scientists are convinced that the side effects associated with the aforementioned drugs have the same root cause and we have a pretty good basic idea of what drives this condition. Research is underway to confirm this idea and we have community projects that we hope will generate additional insights and attract additional scientific interest. This is where we need your help. Please consider to do the following steps to support our efforts:

• Complete the survey as we particularly need more Accutane/Isotretinoin patients. For the first time ever, we will systematically generate data with regard to the numerous side effects of this condition and its impact on quality of life. The survey will hopefully create awareness and leads for publications and research. And it only costs abount an hour of everyone’s time to complete it. See here for more details: Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate

• Report your side effects to the authorities. This is an easy way to create awareness in the medical community and has lead to far more severe warnings on leaflets and handouts to medical professionals. With the current Information with regard to side effects on Propecia leaflets, there is no way I would have taken this poison. And you probably would not have taken Accutane had you known it could cause impotence. See here for more Information on how to report your side effects: https://www.pfsfoundation.org/report-side-effects/

• Provide 23andme data. This is a DNA test. We hope to compile as many samples as possible of DNA from PFS, PSSD, PAS etc. patients. This may generate leads with regard to our genetic predisposition that makes us suspectible to suffer from persistent side effects after the use of these meds. This would be of high scientific interest. It costs only about a 100 bucks to order the test. See here for more Information: Important Announcement: Two Community-Led Research Projects - Please Participate

Your participation in these projects would be really helpful and highly appreciated. The survey only costs you about an hour of your time. And the DNA test is rather simple and not very expensive either. If you have any questions or need any help with this, please let us know.

Thank you and good luck!

2 Likes

lbv, that wild ride is my life! But yeah, it is crazy, even though all this happened to me, writing it out just now I still can’t quite believe it. It’s going to be some work for me just to come to a place of acceptance.

Northern_Star, thanks for the welcome and the information. I will certainly fill out the survey. That’s great to know there is a way to report my side effects, I will certainly do that too. As for the DNA testing, I need to look more closely into that.

One question, is there any effort towards litigation against any of the companies that sell these drugs?

1 Like

Jesus christ… what a story. This whole culture and doctors are purely evil. Hope you find your health. Check out our Tribulus thread please, you can try some protocols from now on.

1 Like

There have been efforts towards litigation, but they are largely dismissed or result in insignificant settlements that are largely absorbed by legal costs. We need to know more about this condition to have a shot at litigation.

Makes sense. Oh well, I’m in this for the long haul anyway! We’ll get justice in the end, I’m sure of that. It’s exciting to see there is growing awareness and progress towards greater understanding of the science, anyway.

And on a more personal note, having immersed myself in this forum over the last few days, I can’t tell you how good it feels to be amongst other people who’ve been through the same Hell. For 12 years I was completely alone in my suffering, now all of a sudden I’m not. Amazing!

4 Likes

Welcome @Luckydevil, and what a write up of your experiences! You certainly do not lack a flair for writing, nor gallows humour. I am impressed by your honesty - not just with others, but with yourself. It can be quite difficult to reflect on such things, especially when beliefs can be so strongly instilled. It’s so easy to forget that every story here is a human being with a (previously in my case) rich life, especially when the condition, community and situation can be so outwardly bizarre. Posts like this are very humanising.

You touch on such an urgent problem. I am often upset when patients, some very young, have reached out scared they will be re-admitted and forced to take drugs that have done them further harm. As with everyone, I wish I could help more. It is shocking what a serious risk to liberty is faced by patients suffering the lasting effects of these substances due to the scale of the clinical failure, and it’s sadly often the most severely affected who are at the greatest risk - those in the greatest need of real support, to which mental health support should be adjunctive. I don’t think it’s hyperbole to say for such a serious organic problem, the get-out-of-responsibility-free card of “it’s psychosomatic” is not just tantamount to psychological abuse, but a present danger to patients owing to the potential of further drugs. This has caused further damage to patients here, and of course it’s of a kind that clinicians simply do not have an understanding of. That’s a nice quote incidentally - very apt.

I am very pleased to hear if nothing else, self blame is leaving you, and I’m pleased you’ve found others in the same boat here Although it drives a lot of posting here, understandably, don’t feel there’s a pressure to self experiment. There are many of us here for the reason you precisely state - so we are not alone, we’re visible, and to make real progress.

It’s very nice to have you here :slight_smile:

6 Likes

Thanks, axolotl. Yes, the collective denial of the effects of these drugs inside the medical mainstream and indeed in wider society makes it so easy for victims to get caught in a vicious cycle of retraumatisation via being slapped with a diagnosis of mental illness and subjected to one (more often several) of psychiatry’s horrifying array of interventions. I consider myself very fortunate I’d done some research into the psychiatric system well before I landed in Wonkaland, so I knew not to touch the fizzy lifting drinks, nor dive headfirst into the chocolate river. Even then, I couldn’t avoid retraumatising myself in other ways, most notably through recreational drugs and my overly zealous spiritual practice, but it could’ve been a lot worse. As I said above, but for the grace of God I truly believe I could be strapped to the wall of a padded cell right now, drooling down my chin, never to know that Roaccutane was the first domino in my downfall.

I also wish I could do something to help the poor souls who get caught in these kinds of cycles, and fear I can do little. I think ultimately we’re fighting against some core societal beliefs, like faith in the safety and sophistication of modern medicine and the authority of doctors. We are immersed in messages that continually reinforce these beliefs and so, naturally, the majority of us absorb them unquestioningly; and if we are caregivers to children, this will be reflected in the decisions we make on their behalf. If I can extrapolate from my own case, tragically it’s often only when a person follows the trusted road all the way to a place of extreme suffering that they start asking questions.

I guess the hope is that those of us who have suffered can warn others to ask questions sooner, but I don’t know, I worry sometimes… Last weekend a friend of mine with whom I’ve had several detailed and emotionally charged conversations about my experience with Roaccutane told me he was considering taking Propecia because he thought his hair might be thinning. And yes, he knew about the risk of impotence. I was gobsmacked and it left me thinking, what hope do I have to change the beliefs of the whole of society if I can’t even convince this guy? But I guess collectively, our voice can be louder… I don’t know, this is at risk of turning into a ramble… I think I’m overly excited to have found this community, there’s so much I want to say that I’ve been bottling up for so long, but maybe I’d better put the stopper back in for now.

Thanks again, axolotl. Those were some kind words. As for the quote, yes, it’s a good one eh? I first heard it used in reference to political bias in the mainstream media, but it’s remarkably widely applicable. Money makes the world go round, as they say…

3 Likes

Thanks for writing your story up, @Luckydevil. As noted, you write well. I’m sorry to hear what happened to you and though I wouldn’t wish any of this on anyone, I am glad to have you here.

2 Likes

Dear @Luckydevil,

Welcome to the site!

I am so impressed by you. You are an absolutely brilliant man. At your young age, and completely on your own, you have managed to understand big truths that very few people grasp, no matter their stature or education: the myth of positive thinking, the harmfulness of psychiatry, the fraudulence of big pharma, the false promise of modern medicine, the incompetence of doctors, the selfishness of the human species…

You are also an extremely talented writer. It is such a tragedy what has happened to you.

I have high hopes for you though because you are clearly on the right path out of this hell - or at least out of the 9th circle of the hell.

2 Likes

Hey @Luckydevil

We took accutane at the same age and we are the same age now. Were you born in 1992? It’s funny and terrifying how many similarities are between us, in the story and way of thinking. I wish I could offer you some answers, but I’m still searching. Like you I don’t believe that we can just push through it. I believe our disease is purely chemical. There are some things that offer temporary relief but sadly there’s no cure. Things that helped me the most were, trt, cbd oil, psylocybin and carnivore diet. Also phenibut and ghb if you want to feel libido and pleasure from sex. But be careful with this shit, very addictive. For now wee need to endure until proper treatment is available, if ever. I hope I will still be relatively young and alive by then. All the best to you and if you want to talk, hit me up on dm. Take care!

3 Likes

AFAIK these waivers focus on the responsibility of female patients to not get pregnant while taking this teratogenic drug.

Pointing this out because many Accutane-“lovers” talk as if waivers fully inform the patient of what they are signing up for and they then use that convenient fact they fabricated to basically blame the victim for misfortunes that befell them. I don’t believe the risk of sexual or reproductive (except birth defects) side effects are mentioned in these waivers, or the potential permanance/persistency of side effects.

The thing is, there may be a chance for a lawsuit to succeed now that sexual side effects are described in the drug information is some parts of the world. I’m not knowledgeable about legal matters, but my understanding is that the sooner the ball gets rolling, the better, simply for the fact that the clock is ticking on victim’s statute of limitations to take action against manufacturers. There is talk from a group of PAS-parent activists in the UK about filing criminal charges against Roche for the negligence of refusing to list sexual ADRs when they had full knowledge it was possible. …And I believe a possibility for US generic manufacterers to be held accountable because of this. I need to get off my lazy ass and get to work writing-up a post about how PAS patients can contribute to this battle.

My journey wandering around in the dark also lasted 11-12 years before finding PFS patients , who eventually led me to this site and other Accutane victims with these “PFS” symptoms and an explanation for a mystery illness that had me near suicide. My take was a little different though. Something I always believed could be fixed, if only I had an answer, suddenly became an incurable disease inflicted upon me by others, and the person who got me started down the path of discovery began blaming me for “doing this to myself” after I found it was Accutane that caused this. You will be far better off not having such an adverse reaction to the realization it was Accutane all along.

Welcome to the forum.

4 Likes

@Greek, thank you, glad to be here with you.

@Sibelio, wow, I’m bowled over. It’s so generous of you to say all that, thank you. Honestly, it’s pretty overwhelming receiving compliments like this for having said what I’ve said, it’s a world away from the reactions I’ve been getting before now. It’s so validating.

I feel like our perspectives on life are pretty closely aligned, as you may have been alerted to by the storm of notifications I guess you received as I ran through your recent post history leaving likes like a dog p!@&ing on lampposts. I find your ideas about the link between libido and motivation particularly fascinating and resonant, and as I read through the list of what you call “big truths”, I find myself nodding somewhat sadly at each one.

I may differ with you slightly in your view that the human species is essentially selfish, though. Even though I agree we’re all motivated by a large element of self-interest in everything we do, I don’t think this is the whole story. We have a great capacity for empathy, too. As it happens, I believe the generosity you and others have shown me in this thread stands as an example… I know it’s a bit of a cheeky example to use, but I am a devil after all, I can’t help being devilish… Yes, I know you’re not just handing out compliments for free, every gift anticipates reciprocation, of course, but I still think there’s a magic ingredient that separates such acts of kindness from more basic acts of self-gratification, like, say, eating a donut: that special feeling of warmth and connectedness, which I think it’s wrong to overlook as it’s one of the experiences people value most in their lives. That’s just my take though, I’m not here to convince you of anything, and who knows, maybe I’ll come around to your way of thinking someday; maybe I just need to go through another few rounds of crushing disillusionment…

Anyway, very pleased to meet you!

@halfthemaniusedtobe, yep, 1992. That’s uncanny. I just read through your story and Holy Cow, there really are a lot of similarities between us: the long years of confusion, periods of mania and psychosis, spells in hospital. I guess this is what Isotretionoin at age 14 does to a person, eh?

So great to meet you. Talking sometime over DM would be good, for sure.

@Dubya_B, not to put pressure on you, I can try to find the details myself if necessary, but if there is indeed a legal effort beginning to take shape, I would really like to be involved. Thanks for the welcome, also. And to be honest, though I do feel considerable relief it’s tied up with the same dismay you describe, realising that my condition is most likely long-term/permanent and out of my control. My feelings are very mixed, it’s going to take a lot of sorting through.

I find it horrific that you, halfthemaniusedtobe and myself all endured such a long period of ignorance about our condition, there really is a powerful conspiracy of silence. But I’m so happy we’re all here together now, with our heads above that water. It doesn’t make it all better, far from it, but it still feels like a huge victory to me.

4 Likes

I’ve read that male patient sign waivers too though. Still it should set off alarm bells that this drug can kill a fetus.

1 Like

Yes, both of your points are true. But what do you do when your doctor tells you “don’t worry about it, you’ll be fine.” Especially when you are still a “child” for all intents and purposes. People report that their doctors tell them not to listen to the horror stories and that just because a side effect is listed, doesn’t mean the drug can cause it. Sometimes I think these pompous scumbags deserve the full brunt of any retaliation a patient might bring, then remember they are lied to by their peers in dermatology and pharma reps bending their opinions.

No, thank you for willingly requesting this. Many PAS patients refuse to take any action by their own volition. I think some people feel defeated before they even begin to fight. PM me with an email address and I will put you in contact with a representative from the parent’s group. Her son was severely affected with sexual side effects and she has done much, including helping get sexual ADRs listed on the RoAccutane label in the UK.

Don’t forget that there is currently research into PFS, which is very likely to hold relevance to PAS. If I ever accept this as permanent, I’m dead. This is a promise I made myself years ago. I don’t suggest anyone do the same, but it has given me the motivation to move forward.

btw- I would like to add to the flattery by saying your Accutane story is one of the most eloquently-stated. Maybe you could write a blog post after you get acclimated with this patient community.

If you ever feel ashamed of any strange theories you concocted to explain your predicament, go ahead and ask me about my “subwoofers ruined my brain and body” or “riding the bus to school with girls in the morning is necessary to maintain male sexual interest” theories. Anything new or different in my life was briefly humored as an explanation for PAS. After the crash, it was “demonic possession” or “carbon monoxide poisoning from a leaky exhaust.” Hard to believe this is what we put ourselves through due to lying pharmaceutical companies and their henchmen.

5 Likes

Hello, @shivgeorge, really pleased to meet you. What you describe is something I relate to very much. All these years I’ve been trying so hard to maximise my healthiness, particularly for the last three years, after I had a mental breakdown. I became so obsessive about eating well, exercising, meditating, avoiding alcohol etc., but it was never enough, I always felt I had to keep pushing it higher and higher because, obviously, things weren’t improving. But I still clung on to this naive optimism, believing my health was in my own hands. So to then discover I’ve had a massive physical handicap all this time, I feel like I’ve been cheated.

It’s as if you’ve been playing a game you thought was fair only to discover it’s been rigged from the start. It’s mindblowing, as you say. All sorts of feelings are suddenly bubbling up, anger, grief, along with this terrifying uncertainty about who or what I am. It’s just a massive psychological overhaul, really. I think I’m probably going to need a fair amount of time for it to fully sink in and be processed, I expect it’s the same with you. I think we need to try to be as kind to ourselves as possible through this, though it’s not always easy.

One big positive at this stage, which I’ve mentioned a few times in posts on here, is the feeling of relief. Recognising I no longer have to put all this intense pressure on myself to be perfectly healthy and pure, since there’s no real point. However at times I find myself swinging perhaps too far in this direction, to the point where I can’t motivate myself to do anything. Maybe this is part of the process and I’ll regain some balance over time, I don’t know. My whole lifestyle was centred around making myself healthy enough to overcome my sexual problems, so now that I no longer believe that’s possible, I’m left not really knowing what I’m supposed to do with myself.

I don’t know if you can relate to any of that, but please feel free to keep me updated with how you’re getting along with this painful, difficult but necessary and hopefully rewarding process. It’s good to meet someone who’s at a similar point. You can message me anytime you want to chat.

5 Likes

I apologize I wanted to edit my post (with regards to writing some personal details), but there was no option to do so. I sadly had to delete it.

Anyway, this has to be the best essay ever written on isotretinoin, for multiple reasons:
One, a teenager doesn’t realize that it affects the nervous system, and takes it to solely cure acne. Two, seeing the experiences of people with anti-depressants, it almost seems like “luckydevil” flew over the cuckoo’s nest. Three: The timeline of agony and inability to understand the reasons for one’s problems and a growing consideration into self-harm as a result of not being of good health like everyone else, despite all efforts to do so. I relate to that very much.

1 Like

Thanks mate, that’s very kind of you to say. :slight_smile: I’m really glad you found things you could relate to in it.

I agree it’s extremely important that people understand the virtual impossibility for teenagers hit by these problems to make sense of what has happened to them. This is something I always try to get across whenever I talk to anyone about this, since it remains the case that a large proportion of the people prescribed Isotretinoin are teenagers.

People need to understand that most teenagers who find themselves hit with severe sexual dysfunction are not going to talk about it to anybody, let alone associate it with a drug which they were probably told by authority figures who they’re too young, naive and trusting to seriously question, i.e. doctors and their parents, was going to help them, and posed no serious risks.

I believe there are many, many more young people out there like us who remain in silence, trapped in their own private nightmare-worlds.

6 Likes