Accutane has stolen my girlfriend's sexuality, starting at age 14

My girlfriend has had her sexual pleasure, libido, and ability to be penetrated completely taken from her as a result of being on this drug on and off for six years. The last round of treatment she took was roughly a year and a half ago.

My girlfriend, started taking accutane for severe cystic acne at the age of 14. So severe that her dermatologist called it the worst case they had ever come across. Due to it being such a severe case, she was initially on 80mg daily for 9 months at a time, as opposed to the traditional 5, and then for 6 months at a time the next two times. Being 14 and growing up in a sexually conservative household, she had never had sex or even masturbated prior to starting this drug. As she got older, the few times she attempted to masturbate she felt pain upon penetration which prompted her to stop. She has been a virgin up until she recently started dating me. We tried to have sex but were unable because as I tried to use my fingers, as well as have penetrative sex, it was immensely painful and brought her nearly to tears. Even softly rubbing or licking had no effect and her vagina was essentially unable to feel any sensation, the only sensation being extreme pain when penetrated.

This led us to spend hours figuring out why this was happening. We researched causes of chronic sexual pain and numbness and found little to nothing that was relevant. I asked her many questions about her medical history to try to seek out factors that could be attributed to this rare phenomenon that an otherwise healthy young woman would be experiencing.

She told me that she had cystic acne, which I had already knew about, and that the medicine she took caused her to have dry lips, mouth, and skin, as well as additional side effects of depression, bone pain, and fatigue. She then realized that her vagina also had trouble getting wet, potentially for the same reason. This led me to google “accutane sexual effects”. The results were few but what we did find was genuinely horrifying. Apparently there are hundreds of other people around the world that have reported having impotence, loss of feeling, and vaginal pain. Seeing posts on blogs and forums just like this one. One of the only things we found from anything close to a news outlet was this article in Elle magazine. https://www.elle.com.au/beauty/roaccutane-sex-life-19097

Unfortunately and to my amazement, many posts of people talking about this were shot down and dismissed as a conspiracy or a troll. I assure you, as I sit next to my girlfriend trying to process this horrifying revelation, that this is not a conspiracy and that I am witnessing firsthand what folks have said but have never been able to medically prove.

The posts and stories that we read in the next couple hours were spot on in describing what has happened to her, and no other reason comes close to being this accurate of a depiction of her situation.

We are not sure what we will do from here. We are making appointments with different medical professionals but since this is seemingly an extremely rare condition we don’t expect them to have any answers for us right away. Hopefully a medical professional will take this with the seriousness it deserves and put us in contact with someone who knows more about this. My girlfriend has never had an orgasm, only numbness and pain. This has robbed her of being able to experience the joys of sex and masturbation and all that comes with that aspect of her humanity. We are devastated to have stumbled on what surely is the cause of this, and I do not enjoy typing this post.

If there is anyone reading this that knows about this, can help us be in contact with somebody who does, or would like to ask further questions or details, please do not hesitate to message me. We are flabbergasted and beyond disbelief at this realization and need every resource available to us in order to figure out what can be done going forward. Message me on here. Any help or direction would be appreciated more than you know.

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Dear Mike,

Welcome to our forum! I am sorry to read your GF’s story, but it’s great to see that she has a proper supportive boyfriend.

First of all, may I ask you to supplement your opening post with some additional detail from our member story template. When you opened the thread, there should have been a list of basic information about your GF’s story and her symptoms. For instance, it is not clear for how long she has been suffering these effects now.

Be assured that nobody here will think that this is a “conspiracy”. This forum here is full of people who suffer from persistent side effects after taking Finasteride, anti-depressants, Isotretinoin (i.e. Accutane) or certain supplements. What all these substances have in common is endocrine disruptions (specifically antiandrogenic action). Hence, the staff of this forum strongly suspects that all these substances cause the same condition and we are determined to raise more awareness of and initiate more research into this condition.

Unfortunately, however, this condition is presently largely dismissed by the medical community, its etiology is poorly understood and there is no known treatment for it. Accordingly, nobody will be really able to point you into a certain direction or to suggest medical professionals who know how to treat the condition. And you should be vary of any treatment suggestions by medical professionals or laymen.

May I suggest to report your gf’s symptoms to the authorities to support our mission to create awareness of these persistent symptoms. You’ll find the necessary resources here: https://www.propeciahelp.com/report-your-propecia-side-effects-to-drug-regulatory-agencies/

Finally, I understand that this is a difficult situation and my post will be somewhat sobering as there is no concrete hope that I can offer. But please visit this forum every now and then. Hopefully, in due time we will make progress in figuring this out.

Good luck!
N.

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Very good that you accept what happened to your girlfriend as matter of fact. I went through hell being with someone who claimed they would be supportive of my endevours into my mystery illness, then denied the possibility after the Accutane connection was made. To read others with PFS and PAS describing, in almost exact detail (including women stating they feel the “female equivalent” of PFS), one’s experience with these supposedly impossible symptoms around the time of taking the drug rules out other rational causes. So, we’re left to fend for ourselves with the only “help” readily available being irrational explanations from assertive fools.

You could try some of the “PFS doctors”, but they may only provide acceptance of PAS at best. Sexual side-effects of Accutane are not officially recognized by the US FDA, and generally recognized as only temporary in Europe.

As Northern stated, it’s never too late for her to try reporting her side-effects.
There is currently a petition to the FDA to add sexual adverse reactions to the label that they have been ignoring for the better part of 2 years: FDA Petition: Sexual Side Effects of Accutane
You could also invite her to join here to participate in the post-drug symptoms survey.

Sorry there isn’t a comforting answer. It’s been a life-sentence for too many.

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Do you know roughly how many people in the world have come forth with lasting sexual side effects from Accutane? Trying to get a gauge on how rare it is. Over 3000? Closer to 1000? 500? If you had to estimate

Also, is there any legal recourse that can be taken? Has anybody tried to do something about this? I am completely new to this issue, having just discovered it along with my girlfriend in the past few days.

I gotta say, I am absolutely sick about all of this. I am so angry and devastated that my girlfriend will likely never experience sexual gratification and that her genitals are completely numb. I am having a very hard time wrapping my brain around this, and I can’t even imagine how it is for her. I have been in a state of shock and depression since finding this out. I care for her so much and it kills me to not be able to do anything to get justice for her. Overall I am just pretty fuckin sad

First of all, inform all the relevant authorities and research institutes that collect data on adverse effects by medication. This is probably one of the most direct forms of action you can take.

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There are only a few hundred reports to regulators of sexual side effects of Accutane. However, this is still extremely high compared to other drugs that aren’t recognized to have sexual side-effects. For instance, ~1/3 cases of ED among 12-17 year-olds reported to the FDA were due to Accutane. About 2/3 were SSRI’s and other psychiatric meds, which are well-known to cause sexual side effects. I’m guessing to have read around 4k individual accounts of sexual side effects on the internet in relation to Accutane.

There have been law-firms approached, but little interest shown by them. Generic manufacturers in the US are practically immune to legal action:

SCOTUS ruled that manufacturers of generic drugs have no safety or labeling obligations beyond what was expressly given by the brand name company and the FDA approval. If the FDA approved a particular label and adverse events appear later, even when associated with the generic drug, the manufacturer of the generic drug is not liable. The makers of the brand name drug are still liable, but only for their brand name drugs. When an individual is given the generic version rather than the brand name version, even if those two compounds are exactly the same, the individual cannot sue the generic manufacturer per this new ruling, nor can he/she sue the brand name manufacturer, because the adverse event occurred with the generic and the brand name company is not responsible for the generic.

Roche and other EU manufactures of isotretinoin now include a warning of the potential of sexual side effects, but if a generic company updated their US label to reflect this change, they would technically be violating the last FDA-mandated label by adding sexual side effects. Is it the manufactuer’s fault for being lawful? This sounds ridiculous, but it is the loophole that legally absolves them of responsibility. So, the legal responsibility lies entirely on the FDA in the US. I believe they have sovereign immunity as a federal agency.

It’s no secret that Accutane is explicitly intended only for severe acne, but it is most often used for moderate and mild acne. The doctor/derm could technically be liable for mis-prescribing a potentially dangerous medication for off-label use in these cases, but I have never heard of them being held accountable.

In short, there’s no legal means to seek justice for the harm done.