Acne or impotence? What your doctor didn't tell you about Accutane
In part one of this article, The Gold Report highlighted the shocking history of the anti-acne drug isotretinoin (aka Accutane), from its beginnings as a repurposed anti-cancer drug to grudging admission that it can cause some sexual dysfunction. However, such admissions are limited, deliberately not publicized, and often accompanied by blatant disinformation. Those who overcome their embarrassment and shame and ask their healthcare providers about what they are experiencing are frequently gaslit, told “it’s all in your head,” and given no hope of things ever improving. We now present part two:
Birth defects, depression, suicide... and no one knows why
The FDA has, in recent years, highlighted the psychiatric dangers related to use of Accutane, even though some studies (certainly not all) have indicated that the percentage of those experiencing depression while using the drug is no higher than that in the general population. Accutane can also cause psychosis and also suicidal ideation (and also suicide itself). The FDA admits that,
No mechanism of action has been established for these events.
In 2002, a 15-year-old, Charles Bishop, flew a small plane into a building in Florida. His mother argued that his use of Accutane could have been responsible for his behavior. The negative publicity gained by the drug in the aftermath of this event and other reported suicides caused sales of isotretinoin to drop. But it is still widely prescribed. Over 18 million people have used it worldwide since it was first marketed.
My acne is long gone, and so is my libido
Most of these people have no idea what it can do to them. Some suffer in silence and ignorance. Others discover by chance that what they have been experiencing is linked to the drug prescribed by a medical professional who failed to provide them with the opportunity to give their informed consent.
OMG. I was just randomly browsing my reddit main page and someone talked about Accutane, the same Roaccutane I took in 2017 ... and it can cause PSSD???
My PSSD started in 2017, the exact same year I took Accutane for 6 months for my severe acne that’s completely gone now.
Before that I had no sexual dysfunction. It just hit me like a bullet. OMG I’m having a panic attack, that explains everything. I’m panicking—what do I do?...
I wasn’t told about PSSD ... the dermatologist who prescribed me Accutane gave me a little flyer that talked about the possible suicide side effect but this flyer or the doctor never talked about PSSD...
When stopping the drug starts the problem
PSSD is post-SSRI sexual dysfunction, sexual dysfunction that results from using anti-depressant drugs in the SSRI class, such as Prozac or Paxil. All the SSRI drugs have been implicated in this devastating set of adverse effects. As with Accutane, doctors are usually either ignorant or in denial. (See here for a Gold Report article on PSSD).
Part of the problem is that sexual dysfunction and emotional debilitation are not always obvious when starting to take Accutane. Mild anhedonia (inability to feel pleasure, not just sexual but of any kind) is often experienced during treatment. Sometimes it is felt to an extreme degree, but those who experience it tend to feel the effects much more strongly after stopping Accutane.
According to a study published in 2005 in the Spanish Urological Journal, sexual adverse reactions are far more prevalent than what one would assume from FDA statistics (or anecdotal reports). The study found that 6 out of 20 (30 percent) of people taking isotretinoin developed erectile dysfunction.
‘This is living hell’
Search the internet and once you know what you’re looking for, the anecdotal reports start flooding in:
It’s been a year since I stopped taking Accutane and nothing has changed. I have stopped dating girls for the fear of them wanting to have sex and me not even being able to. I have never had sex and now I will never get to experience how great it is. Drugs like Viagra do not help me at all. Please for the love of God do not take this drug. I don’t even feel human anymore.
These horrific adverse events are not restricted to men:
Since Accutane my sex drive feels totally wiped out. I had been seeing this wonderful guy, and I had to tell him that I need to put everything on pause. I could not imagine being in a romantic relationship with anyone while in this state.
And the emotional effects are just as devastating, if not more:
A few weeks into my course I realized I couldn’t feel happy or cry about anything either. I’ve been stuck like this for over ten years. This is a living Hell! I never had anything like that happen to me before Accutane. The ironic part is that my acne wasn’t even that bad.
Parents of minors who thought they were helping their children are left with incredible feelings of guilt and helplessness:
He blames us, his parents, for taking the risks involved with this drug. We were the adults, he was the child. We feel dreadful — guilty, depressed, stupid. My poor son is impotent as a result of a terrible decision made by his parents. He is depressed and sad and angry, and his relationship with us, his parents, is broken.
'The doctor warned us about everything but this'
Symptoms described by males both during use of isotretinoin and after include: erectile dysfunction, impotence, partial or complete loss of libido, genital anesthesia, anorgasmia, decreased and watery ejaculate, shrinkage in the flaccid state and lack of blood flow to the glans when erect.
Women have reported vaginal dryness, painful intercourse, loss of libido, genital anesthesia, and anorgasmia as a result of isotretinoin treatment, any of which may accompany altered menses, loss of menstruation and infertility.
Doctors, meanwhile, are often ignorant of any link between Accutane and these side effects and/or unwilling to believe that the mostly young and seemingly healthy people describing their suffering could actually be experiencing such an extreme disorder. Tests usually fail to detect anything wrong.
My son was never warned of any of this. The doctor spent a good 45 minutes going over EVERY other side effect, but not ED. It is not even a listed side effect. Six months in and now he is having “issues” that he never had before. It is terrible that this is not listed as a possible side effect when some studies show 25% of patients will have it.
The American Ostopathic College of Dermatology has an entire website entry on isotretinoin where there is not a single mention of the sexual dysfunction caused by this drug.
Dermatologist: ‘This isn’t a hormone, so there’s nothing to worry about’
On the Realself.com website, people can post questions to be answered by medical professionals. Board-certified dermatologists consistently deny that what they are experiencing could be related to isotretinoin:
Hello, I’m an 18 year old male and I’ve struggled with cystic acne for 6+ years. I’m seeing a dermatologist in the next month, but thought I’d ask this question to get other opinions. I think I’m going to go on Accutane because my brother had incredible success with it, but I’m incredibly worried about permanent loss of libido or sex drive, I feel like I’d be suicidal if this were to happen. From everything you’ve experienced is this a common or somewhat common issue? Thank you for your time
Answer from board-certified dermatologist Amy Y. Paul:
Thanks for your question. I would not expect Accutane or generic isotretinoin to have any effect at all on your libido or sex drive. It is not a hormone in any way, and is basically just a special form of vitamin A that makes your skin very dry and helps clear up acne very well. Women have to take birth control or be using 2 forms of birth control while on it so a fetus in the womb does not get exposed to the medication, but other than that, it has no bearing on sexual function or hormones. Talk to your dermatologist about your concerns, and they will help you feel more comfortable with the medication. I hope you have wonderful success and clearance of your acne.
Doctor: ‘Stop obsessing and your problems will go away’
Another person asks about libido that has been “lost entirely,” and gets a dismissive response from an MD:
I have never seen this side effect in my patients. You should consult with a urologist for this problem.
One young man writes in, describing his experiences:
I'm a male who took a course of Accutane from Oct 2012 to Mar 2013. 1 month off (April), I noticed I was having a problem with maintaining an erection. About 3 months after, my acne came back less severe. I started a second course at the end of June. My acne cleared within one month of each course. My sex drive has steadily tanked since then and I can't stay hard. I'm a worrier so this has weighed heavily on me. Has anyone seen this association? Am I making it worse by obsessing about it?
Answer from MD:
I have not seen any correlations between Accutane and sexual dysfunction. Most definitely stress and anxiety lead to this more than anything, so I would absolutely say that obsessing about it is counterproductive.
‘Please don’t take this medication’
The effects have been documented as lasting for years—and even decades.
I started taking Accutane my first year of high school. I had what was called cystic acne, one of the worse cases of acne. I tried everything under the sun then my doctor told my mom and I about a new drug that was very effective, called Accutane. He told us about the side effects: nose bleeds, dry lips, headaches. Never once mentioned sexual side effects.
I’m 51 now. and have been dealing with sexual dysfunction for 30 years. At times it could be masked by meds like Cialis or Viagra, Now I avoid dating, the issue has gotten so bad. All these years I thought it was in my head, that it was my fault, maybe stress, or that I wasn’t eating healthy enough or getting enough sleep.
I wasn’t attracted to my now ex-wife—I remember telling the doctor, when I was 35, that I needed a prescription of Cialis on a regular basis or my wife would leave me. But it didn’t save the marriage — the damage was done for too long.
Please don’t take this medication.
Disclaimer: The information contained in this article is for educational and information purposes only and is not intended as health, medical, financial or legal advice. Always consult a physician, lawyer or other qualified professional regarding any questions you may have about a medical condition, health objectives or legal or financial issues. If you are struggling with suicidal thoughts, you can call a qualified free mental health helpline or seek help from a qualified therapist.
