Where are all the Post Accutane Syndrome (PAS) / Isotretinoin sufferers?

Are there many female PSSD suffers? Maybe this will help hone in on the pathology of PFS,PAS,PSSD.

Yes I’ve definitely read a few female related posts over on Rxisk, women in their 20s with gential dryness and numbness. I’d presume it’s very similar to a males situation as the clitorus is basically the female glans and where I’d presume most if not nearly all the pleasure comes from, so if that’s numb like us, same situation maybe?
I’d be interested in hearing more about this because I definitely think it’s the same thing as us males as females are quite close but structured slightly differently in that area.

Women also seem to talk about sex a lot less in general among eachother from my experience but I could be wrong. I guess female sexual dysfunction is a lot harder to prove because they don’t have that visual feedback males get with an erection and maybe their doctors would just say they aren’t doing it right or something?

Definitely a horrible thing to deal with regardless of what gender you are.

There are likely many factors at play.

  • As @Devolution said, there is quite a large portion (maybe 15-25%) of female respondents in the main Accutane sexual-dysfunction post on Rxisk and many of them describe physical, and mental, symptoms…

  • There are several female members of the PSSD forum who are regular participants, but that forum has been open to women since it began, including a subforum for females with PSSD. Some of these women also describe symptoms of emotional blunting.

  • Correct me if I’m wrong, but women appear to be less likely to participate in online forums in general.

A close female acquaintance of mine from the acne.org forum suffers tremendously. She experienced libido loss, depersonalizsation/derealization, and blunted emotion from Saw Palmetto, then total sexual dysfunction, loss of emotion, and a slew of physical symptoms, like skin thinning and sunken facial features, after taking Accutane. She has described her condition as being the female version of many PFS stories. We have also discussed some of the reasons females are less likely to mention sexual side effects.

  • A major point is that women may be able to function sexually, despite a total loss of sexual response. Meanwhile, a man needs sexual response to gain an erection for the physical act of penetration.

  • Men are more likely to define themselves according to sexual parameters.

  • Infertility after Accutane has been a major concern among women and there are several studies showing a negative impact of the drug on measure of ovarian reserve. I will try to remember to post some of these studies here this week.

This site has also restricted women from posting in the past and currently has no active female members I am aware of. This might call for an invitation for women to join.

Half of us aren’t even very motivated to pursue PFS as the explanation for our problems just because doing so doesn’t actually provide any solutions, it’s all very complicated, and it puts you at odds with accepted beliefs in the medical community. There are all kinds of potential causes of depression and reduced libido. I think females who have the syndrome, since they are able to continue to have sex and children anyway, are less motivated to try to figure this mess out than men (who are rendered unable to do either of these things). There is also not the same expectation of women to “perform” sexually that there is of men.

Hi Everyone,
Is there anyone in Brisbane, Australia who would like to chat or possibly meet up? Personally I get tired of reading forums all the time and so just looking for some local support. Perhaps we could talk to some doctors together?

MT

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Does anyone have an idea on how we can find more PAS / Accutane sufferers to take the survey? PSSD has made huge progress these past days (thanks again to all the PSSD people who came over for this, and to all those who helped spread the word). It would be great if we could get Accutane/Isotretinoin to at least the same level.

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On a small level, while we work out how to reach more people, can everyone ask one other person to complete the survey? If you’re a PAS / Accutane person (but this applies to everyone reading this), can you reach out to one person in your community and push them to take the survey? This isn’t enough, but it is one EASY thing we can all do.

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I think that in addition to the survey, we should encourage people to do DNA testing on page 23 andme. If someone did not do this research, I encourage you to do so.

Do you say this because the survey asks questions that can’t be answered if someone is/was sexually inexperienced at the time they developed PAS?

I had trouble because of those types of questions also and had to guess how I would have performed sexually if I had been with a partner at the time.

ps- Thanks!

I have send you a PM

Iam so sorry, I have had this survey for so long but I am so dysfunctional now and I have forgotten so many things that a normal person should be feeling that when I opened the list of symptoms that I first wrote down when I developed this, it broke my heart that I had even forgotten that I am not experiencing so many things. I just closed the survey.
I will definitely get it done, sorry to all you mods who are making so many efforts.

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PAS when you don’t finish the survey it saves your place so you can just work away at it a little at a time. It’s definitely long and somewhat exhausting but filling it out is probably the best thing in the world we can do for ourselves so I hope you will keep trying to work away at it.

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Just in case anyone is worried about this:

  1. there is a button at the end of the survey you can press so that your survey will not be associated with your username

  2. your username can be changed by me or another mod/admin.

  3. your email address can be changed by you.

All of this means you can tie your account to an email address which you only use for here, you can have a username that is not connected to your actual name or social media accounts, your survey is not tied to either your email OR your username.

Your privacy is safe.

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We are not asking of any personally identifiable information (PI) in the survey and even explicitly ask users not to provide any. We also have a main point in our Terms of Service which clearly states that users should never disclose PI on this site, be it publicly nor in pm. If users follow these rules, there cannot be any breach of confidentiality because there is nothing to breach. Also, we will not publish attributes such as age/weight/height/country at the response level, because those could potentially be of help to identify someone, in case there has been a certain level of disclosure by the user. The only thing people must be careful of, is to not use email addresses which contain your name on this site. We also warn about this in our TOS. In case our servers would get hacked, which is unlikely, an email address with identifiable information in it could become problematic. Please note that users can change their email addresses in their profile at any time. If you do so, please send me a pm because we need to change the email address in our survey database manually at this time.

In any case, thanks for participating.

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There’s really no excuse for failing to complete the survey.

For some reason, the PAS community at large is full of excuses for not helping themselves or the victims who come after them and the degree hope-mongering because “some” PAS patients purportedly recovered with herbs (or whatever) in Accutane’s 30+ year history is unbelievable.

There are 2 small things that each sufferer can do that are totally free and involve less effort than most devote to posting on forums.

Those are:

  1. Reporting side effects directly to regulatory agencies
  2. Completing the validated surveys within the larger symptom survey available on this site.

The survey is not only meant to satisfy curiosity about these conditions, but has been designed in such a way that the data can be compared to what has been reported in medical literature in the past regarding sexual, psychological, and physical symptoms we commonly experience. This was done with the intention of approaching scientists in mind.

There’s a PAS parents group in the UK who are constantly fighting on your behalf to prevent Accutane from destroying more lives and to help those for whom it is too late and you do nothing.

Side effects from Accutane might as well no longer exist in the US because PAS patients in the US do nothing.

All talk.

What is most concerning is that, as a group, we value the quality of our lives so little as to allow the current state of affairs. We’ve allowed pharmaceutical companies, doctors, and regulatory bodies to reduce us to whimpering, beaten, dogs who roll over without the slightest retaliation on our own behalves.

For those of you who have taken some proactive steps toward helping yourselves and others beyond participating in the fad treatment of the month club, I sincerely apologize that it has come to this.

You can only do so much with so few people.

I’m afraid if we can’t be more productive as a group than we have been in the past, we’re all doomed and we will have many more joining us.

@anon90613791 , thanks! Please encourage any other PAS patient you may speak with to participate.

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I’m here.

Previously followed this thread for years:

along with Dubya_B if I’m not mistaken.

I’ve taken the survey here and reported to RXisk.

Took Amnesteem approx 15 years ago. Haven’t felt the same since. Took a while for me to link symptoms with the drug.

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Thanks.

Yeah, that thread is a very sad place.

What was your name there?

Remember the 4-5 people who appeared and posted, “don’t worry guys, I’m here to save the day and cure us all”?

Remember all the people who said they would do whatever it takes to make Roche pay the price for the injustice inflicted upon them?

Remember the ones who said they wouldn’t bother reporting side effects because it wouldn’t make a difference and went on to talk about how they would be cured by shoving coffee up their asses or swapping fecal material with someone healthy?

The guy who said he was okay with giving a fraudulent doctor his money for surmising problems with major organs by pushing down on his arm; because the doctor seemed like he knew what he was talking about and could probably heal him?

Where are they now, I wonder?

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Awesome! 3 additional PAS patients have completed the survey. Thank you all.

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Thought the same when I looked at the numbers the other day, I felt a little demoralised after seeing so few survey participants, but looking back today many more have jumped on board which is great to see :smile: finasteride went from like 51-77 and antidepressants have gone up a fair amount too, now accutane is getting there slow and steady.

Whoever had the idea to put the survey statistics front page everytime you visit, great job on that, its like a little race

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Same name over in that thread Dubya, and yeah my major problem with that thread was it was new bullshit everyday. People would forget as soon as a new page hit and post the same things that were discussed 15 pages prior. This is definitely a superior format.

Also, the survey, while great, I feel could be a bit more concise. I feel like more people would actually do it if it didn’t take so long and the questions were narrowed down a bit.

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