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
[x] Loss of Libido / Sex Drive
[x] Erectile Dysfunction
[x] Complete Impotence
[x] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[x] Loss of Nocturnal Erections
[x] Watery Ejaculate
[x] Reduced Ejaculate
[x] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[x] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[x] Confusion
[ ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[x] Extreme Anxiety / Panic Attacks
[x] Severe Depression / Melancholy
[x] Suicidal Thoughts
Physical
[x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[x] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[x] Muscle Wastage
[x] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes
Misc
[ ] Prostate pain
[x] 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
[x] Frequent urination
[x] 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
