Some people here say there needs to be some scientific backing in these claims. Here they are:
One hundred and twenty cases of enduring sexual dysfunction following treatment [isotretinoin, finasteride, SSRI]
The International Journal of Risk and Safety in Medicine, Volume 26, Number 2 / 2014, Pages 109-116
[Edited link out]
Abstract: There have been reports for over a decade linking serotonin reuptake inhibitors, finasteride and isotretinoin with enduring sexual dysfunction after treatment stops. OBJECTIVE: To explore the clinical pictures linked to all 3 drugs. METHODS: We have selected 120 reports to RxISK.org reporting the problem and mined these for data on age, gender, drug of use, and impact of the problem. RESULTS: The data make it clear that the three drugs show extensive overlap in symptom profile, regardless of sex or country of origin. CONCLUSIONS: The availability of 120 reports from over 20 countries add to the case for the validity of the syndrome. This is severe and enduring condition can result in death. An understanding of its physiology and an approach to treatment are needed.
By the way, after 4 years of workup and every endocrinology test available, my official diagnosis is hypogonadotropic hypogonadism and subfertility secondary to partial hypothalamic insufficiency, due to isotretinoin treatment. I hope this helps other people with problems: find a good reproductive endocrinologist (don't go to a generic endocrinologist, they are clueless) and get your hypothalamic function tested.
By the way, after 4 years of workup and every endocrinology test available, my official diagnosis is hypogonadotropic hypogonadism and subfertility secondary to partial hypothalamic insufficiency, due to isotretinoin treatment. I hope this helps other people with problems: find a good reproductive endocrinologist (don't go to a generic endocrinologist, they are clueless) and get your hypothalamic function tested.
Great to hear you finally have a fitting diagnosis after going through so much trouble!
Did your doctors directly report isotretinoin's involvement in your fertility and hormone problems to your country's regulatory agency?
Dubya, the doctors offered to report it but they couldn't, because I took accutane in the US, but was diagnosed by them in Europe. (There were several hormone stimulation tests that are standard in European endocrinology, that US endocrinologists did not perform or know; as a result several diagnoses were missed).
hi all took accutain 30 years ago took enough to sink a battleship .u all think this ed is jest a short term thing . gess what its not im 46 and it does not work and has shrunk to bout nothing . I doint do drugs of any kind u also get ibs and memory loss in my case . so if u know some one on it or getting ready to take this stop them and show all rescerch on it. one drug that sucks bad ..I read some where it neaver gets compleaty out of ur system I belive it with al my health roblems I know some of them are because i took accutian . Robbie
hi all took accutain 30 years ago took enough to sink a battleship .u all think this ed is jest a short term thing . gess what its not im 46 and it does not work and has shrunk to bout nothing . I doint do drugs of any kind u also get ibs and memory loss in my case . so if u know some one on it or getting ready to take this stop them and show all rescerch on it. one drug that sucks bad ..I read some where it neaver gets compleaty out of ur system I belive it with al my health roblems I know some of them are because i took accutian . Robbie
Robbie you are right, this drug sucks bad. We are currently putting together an ANTI Accutane program, which is going to touch also on other potentially dangerous prescription drugs. Actually we may go as far as basing it generally on prescription drugs, but it is going to have a damn well written section on accutane, if not two seperate programs. I think it is interesting of the age gap and sparked up when I saw your post.
Guys and girlss, I know that I am new to the fourm here but I am moved when I read about accutane stories and I am not sure why. I just wanted to formally introduce myself because I guess you should do that, and hey I am a good guy. I am ALAN, I have my PhD. If I could have my dreams come true, I would love to be in the Accutane documentary. If you havent seen it, it is a BBC special "Dying for Clear Skin" (It was definitely made in the UK).
Something is going to happen with this Accutane deal. After all, we are all a bit too late to collect our share of the lawsuits
It is one of the most interesting things to me probably because it seems so endless, but also becauase I suffer myself. I'd be thrilled if anybody wanted to chat or ask questions.
Robbie you are right, this drug sucks bad. We are currently putting together an ANTI Accutane program, which is going to touch also on other potentially dangerous prescription drugs. Actually we may go as far as basing it generally on prescription drugs, but it is going to have a damn well written section on accutane, if not two seperate programs. I think it is interesting of the age gap and sparked up when I saw your post.
Hello.
Could I ask the nature of this program you are speaking of? Sounds interesting.
Also wondered how long it has been since your course of Accutane?
I am approaching 15 years since I was hit with the worst of my side effects.
Consider printing this report and taking it to your doctor if you are seeking treatment or recognition of erectile dysfunction after taking Accutane:
One hundred and twenty cases of enduring sexual dysfunction following treatment (2014 full-text)
[Edited link out]
It is a legitimate journal-published paper, and also viewable on Pubmed.
Accutane /isotretinoin is not the focal point of the article, but several case reports are mentioned.
Hey guys, I finished accutane about 3 years ago and had ED. For 2 years I was on these sites and was horribly depressed thinking I was sentenced for life with this. A year ago I found out that too much porn causes erectile dysfunction and stopped immediatly. After a few months of no porn and basically no masturbation my boners started coming back. I still had trouble with getting boners sometimes though, especially while standing up; also my tip also would never expand with my shaft like it used too. That said I thought that the accutane still had some effect on my boners. And then I read about something called hard flaccid (pelvic tension); It turns out I had that too. After a few visits to a pelvic floor physical therapist who taught me some special massages, stretches, and relaxation techniques, my ED is now totally gone. Before you give up all hope look into these things, for me it wasn't accutane at all; it just happened that my other issues happened around the time I came off accutane. If you wanna get more info look up porn induced erectile dysfunction and hard flaccid/ pelvic tension. Good luck to you all
Yeah, I think "Crank92", who posts in the "repairing long term damage of Accutane" thread developed long term sexual symptoms during a low dose trial. You might want to talk to him.
There was also a female who used to post in that thread who had sexual problems after only 5 40mg pills.
Look all I know is that my erection quality and libido were fine in the first two months of accutane at 40mg a day but as soon as I upped the dose to 60mg a day for the third month and added some prednisone to my diet I noticed it slowly diminishing until one night I drank alcohol and just like that I couldn't keep an erection so I stopped accutane and within two weeks I improved slightly but it has seemed to crash and within the past three months I am slowly improving without any real change to my lifestyle and just waiting but I fear that it will take a long time to even be half of what it was. I just don't understand how quickly a drug with no listed side effects like this can effect me in such short amount of time and completely change my life. I also have mild depression and anxiety.
I'm keen to know what dose people were taking, for how long, and at what point they noticed an impact? Then we can see if any patterns emerge.
I took 40mg for 4 months when i was 18 for moderate / severe facial acne. Very few sides effects and was a miracle drug for me.
Then at 25 i took 20mg for just over 7 weeks for mild/moderate body acne and it decimated my whole body and mind. I stopped taking it as my libido shut off, i noticed watery ejaculate and my joints started clicking something awful. It's been 11 months since i stopped taking it and still suffering big time with ED and clicking joints. Trying Zinc, Magnesium, Vitamin D and Glucasamine supplements for the last 2 months but so far to no benefit.
Those that have recovered, please can you state what timeline since stopping accutane things got better?
Seems to be a trend that most people who suffer sexual symptoms from Accutane greatly improve in the first year after stopping.
This doesn't mean recovery, but going from near impotence and asexuality to having some function and semblence of a libido.
It is difficult to say with any certainty how your situation will pan out, but give it time. Panicking won't make it any better.
Hope you end up in a situation where it doesn't effect your life too much.
All the best.
That sucks dick that it happened to you guys. Kind of fucked that the doctors didn't give you any warning at all. But don't give up on it, guys. Anything is possible. I'm sure if you eat healthy, start exercising, and spending time with your fetish, you may start to heal again. Just do healthy activities. Things you love to do. And eating healthy means organic products, guys. Not to be a health nut, but they put awful and very dangerous shit in our food.
POSITIVE NEWS ON ROACCUTANE/ ACCUTANE SIDE EFFECTS
I haven't ever posted on this website, but during a week or 2 period I often would read horror stories over the internet of the links between sexual dysfunction and roaccutane. Before Roaccutane my acne was quite bad, it personally never affected me.
About my acne.
My acne looking back was about a 7/10, on a bad period it was a 8/10. I was aware that i had very oily skin, literally like id just look at it and be like how the fuck do i have that much oil on my face but yeah. Acne had not ruined my life and i did what many people think impossible with acne, whilst having acne i had still been able to get a girlfriend. Acne in no way affected my confidence, and in all honesty it just pissed me off that i had spots on my face. I had finished school and started college, i had started my first job. I had acne that went through good and bad stages, but never saw it as a disadvantage like many people often do. I literally thought, okay i had spots, shit happens, and in the nicest way possible there is always some one worse off than you. I had used all the random shit the doctors give you, antibiotics to rub on the acne, tablets to take, creams to apply, fuck knows what half the shit i was putting on my face at night was but some of it bleached my pillow at night. I was using face washes of all kinds whilst in the shower, washing my face in the morning when i woke up, before i went out, literally when ever i felt like my face was too oily.
I'll try make my post as brief as can be. Im 18, from England UK and was on roaccutane for roughly six months (as far as I know roaccutane is the British equivalent to accutane? Correct me if i'm wrong!) I am in a 2+ year relationship with my girlfriend that I really do care for and love, without sounding soft as. Before and during my course of accutane sex was fine, erections were all as they should. I did however start to notice a few months into my course that the speed I gained erections while watching porn on my own at night had taken longer, to achieve, something that didn't bother me, as it wasn't a regular thing just something i would sometimes notice, and I in no way noticed during sex or did i link to the use of roaccutane. Erections during sex and with my girlfriend were as strong as they had always been.
On roaccutane:
I didn't really get many of the side affects i was warned about. I noticed i got angry and wound up a bit easier, sometimes i would feel a bit down about life, but always just put this down to having a bad day, being hung over, or just generally the shit you deal with day to day. I got very sore dry lips, and they would often peel which was pretty rough, looked like i had herpes or some shit. i would cover my lips in chapstick all the time, and if anyone is reading this and needs a tip about the dry lips, i found the only one that actually worked and helped me was the Blue chapstick that had 'medicine' written on it, this stuff was actually sent my god to help roaccutane users i swear. I got kinda dry skin whilst on roaccutane but it was hardly a problem, i had previously been on some other cream that literally stripped away my skin and i looked like a survivor from a burning building, the skin on my cheeks literally flaked off. (at the time i never realised how bad i must of looked, but now i understand how much of a goon i probably looked everyday). Roaccutane was always mentioned but only as a last case scenario for acne treatment.
How shit went down:
Like I'm guessing most young couples do me and my partner would have sex a few times a night. One night on our third bang, i noticed that i was finding it hard to get a normal erection, i wanted to have sex but my penis just wouldn't sort itself out, my head wanted it but my penis just felt asleep, i was able to get a weak erection and i guess you could call it luckily, complete having sex.
--I did notice that once i became aware of the 'problem' it was distracting and i knew that the distraction itself, that the problem was causing was a reason for the problem to happen.. if anyone can understand that what im basically saying is that it became a small self fulfilling prophecy. Anyway the issue in no way upset me at all and life stayed as it was, infact i went through a week or two long stage in which all i did was think with my dick and was cumming up to 3 times a day. I was actually pretty weirded out by it to be honest. (I've always been a guy who makes sure i've came atleast once a day, as far as i know thats pretty normal..)
I still had no real sexual issues that affected me that could be related to the use of roaccutane. The so called 'issues and side affects' of roaccutane only started to become a real problem in the last week and a bit of my treatment, and persisted into the 2 - 3 weeks, maybe even a month and a bit after i finished my course. I blame myself for the majority of the issues.
Im one of those people who will google my side affects from anything to a cough to a bad head ache, which is always the worst thing you can do as i talk myself into thinking that my aching foot has actually turned cancerous and i know have some kind of weird obscure problem that no one can help, it'll eventually kill me and i'll die. I did this with roaccutane. I somehow found myself on forums and pages like this with people telling of horror stories linking their acne treatment to sexual dysfunction. The only thing i achieved with doing so, and reading peoples posts was scare myself into thinking anything along the lines of, oh my god my penis is broken, my penis will never work again, i am literally going to die alone and quite embarrassingly i thought all i want to do is just to be able to have a normal orgasm again.
For around a month, i was telling myself that my life is over because my sex life is over, and with it i lost every last strand of my humanity. I found myself constantly googling words like, accutane, roaccutane, sexual dysfunction, penis, permanent which im sure many of you can relate too. During this month I did little to look at the positives that i had gained from roaccutane. I had clear skin, that many people were now actually jealous of. My skin was now ALOT less greasy and oily than it previously had been before the drug. My hair was less greasy im pretty sure too.
There was however a problem, like i said roaccutane had been causing me a problem with my erections, to some extent. I wasn't getting erections from porn much anymore, (maybe 3/10 times i was finding myself flat whilst watching porn?) I still had my sexual desires, thoughts. I did however feel as though my sexual libido had dropped. During the month of self diagnosing myself with sexual dysfunction, i prayed that my life would go back to normal.
To recap all the 'serious' sexual side affects i felt i experienced on roaccutane are:
Occasionally weaker erections
possible lower libido
the list isnt long but it was causing me mad levels of stress. Long story short i do believe that accutane or roaccutane CAN cause serious sexual problems. I do however believe that many problems experienced, can be self inflicted. The stress i was putting myself under during this time with thoughts of worry about sexual dysfunction were definatly a massive factor for why my body was being the way it was. Anyway there is no doubt about it that im rambling now, so i ill cut to the chase.
What i did to 'fix' myself:
-BAN PORN: I stopped watching porn for a week or so after researching the affects of porn induced sexual dysfunction (give time to read about this) - Also take time to look up how fucked up the porn industry is.
-EXERCISE: Im not overweight, but i dont do much exercise. i made time to go on a long bike ride a few nights a week and get the blood moving around my body.
-FLUIDS: i also ramped up the amount of fluids i was drinking during the stressful period, i started making sure i was drinking 1.5 litres of water a day minimum. i ended up drinking 3 litres in one day. (be careful doing this as it can be potentially bad for your heart).. ive heard.
-DETOX: i didn't overly eat healthy, i cut down on the amount of fast food i was eating after reading how certain bits in roaccutane latch onto the fats in your body.
- one of the best decisions i made was too ban myself from reading horror stories of accutane. All i was doing was scaring the crap out of myself over problems i probably just didn't have.
I also read that some people started vaporizing cannabis oil and it helped with their problems. (vaporizers are believed to be a healthier alternative to smoking). The only cannabis oil i could get was if i made it myself which is long, so i was just smoking usual weed. This helped especially when i was stressed as it calmed me down yeah and to be upfront my dick worked fine when i was high.
Basically before i leave i'll just say that although there was a problem caused by the roaccutane, there biggest problem was myself. I was putting way more stress on myself than i needed to. I took care of my body and my body took care of me. I guess what i really wanted to do with this post is highlight that accutane or roaccutane really isnt just all doom and gloom, and once you have it you're not destined for a life of lonliness. Roaccutane is a risky drug, with serious side affects, this should always be left like it was in my case as a last plan for curing acne. It's also worth noticing that the majority of people who take time to write their horror stories on the internet are usually the ones who in the nicest way possible do have serious side affects linked to the drug. I rambled a load but hopefully you were all able to understand what i was trying to get at..
last little bit, i do not think roaccutane and accutane should be banned, as its success rate is higher than its failure rate. i do however believe that work should be made in combating the side effects of the drug, so when things do turn bad they can be fixed.
And yeah if you really did take time to read all of what i said thanks!
yeah i said i'd be quick about this, i lied.
This video might be relevent to this topic
This guy started getting symptoms of ED within 6 days of been on 10mg Accutane. And he also developed ringing ears. It's hard to believe how much side effects he got from such a low dose.
EDIT: It's a shame he removed his video. I don't know if anyone mirrored it but I hope they did. I think he's video was a very valuable proof of how much damage Accutane is capable of causing. He looked like a very "fit" guy, but on that video, he was an emotional mess.
This video might be relevent to this topic
This guy started getting symptoms of ED within 6 days of been on 10mg Accutane. And he also developed ringing ears. It's hard to believe how much side effects he got from such a low dose.
EDIT: It's a shame he removed his video. I don't know if anyone mirrored it but I hope they did. I think he's video was a very valuable proof of how much damage Accutane is capable of causing. He looked like a very "fit" guy, but on that video, he was an emotional mess.
what the actual f--k. I'm kind of appalled at how this thread just ends with this.
This video might be relevent to this topic
This guy started getting symptoms of ED within 6 days of been on 10mg Accutane. And he also developed ringing ears. It's hard to believe how much side effects he got from such a low dose.
EDIT: It's a shame he removed his video. I don't know if anyone mirrored it but I hope they did. I think he's video was a very valuable proof of how much damage Accutane is capable of causing. He looked like a very "fit" guy, but on that video, he was an emotional mess.
Maybe a lot of the stuff was in his head. Thats the prob w accutane if someone uses it and doesnt get good results they knock it. kids with terrible skin go on it and r already depressed, stressed and sometimes about to have a nervous breakdown before ever swallowing the first pill. I know when I started to scar I about had a nervous breakdown. Also reading all the stories doesnt help.
I did roaccutane for 6 months with no side effects except dry lips. My acne cleared so i came off it. My acne started again when i did so i was prescribed one more month. one week in i tried having sex with my girlfreind and coudnt get an erection. i thought it was nerves but the next day i tried to get an erection alone but coudn't. I coudnt get one for 3 days and decided it could be related to going back on roaccutane. I came off it and 2 days later i could achieve an erection again. I am 99% sure the roaccutane caused the erectile dysfunction but in my experience coming off it makes a near immediate impact.