An Accutane Story [Isotretinoin] (Long post)

Member Stories
,
#21

I was in personal contact outside of the forums and as much as I hope that is the case I know his condition had worsened ): let’s hope for the best.

Yeah, true. I don’t think it’s going to be that useful without a before/after timeline re pics. Maybe I should have been more lascivious before i took finasteride so i had some kind of snapchat history to fallback on. Nevertheless, we have other irons in the fire, and whether someone goes ‘oh yes that is worse’ or not, it’s not going to do those suffering any favours or get a label change to protect others.

1 Like
#22

I just don’t see how they can deny such drastic physical changes with some people, that’s a sign of a poor doctor. I’m sure there are a few good doctors out there who genuinely want to help us. It’s just finding them which is the problem.

1 Like
#23

Sorry to hear your story chief. It is similar to so many others out there. Reading your story is like a carbon copy for my own. You really nail the psych effects especially.

The thing I think is that you are not willing to accept what has happened to you. And that is a fucking brilliant thing. It’s the first step back out of this mess.

I replied to you on another thread – but do you have time to boost this site? Could you spend a smidge of time asking people to register? Maybe over on Reddit or acne.org, or others.

It’d be a big, big help.

How does it sound?

2 Likes
#24

Hopefully the guys see my post on the acne.org thread now, it’s such a mess because everything gets burried over there.

#25

Well unfortunately I got back from the doctor and he didn’t even look at my skin, he thinks my symthoms could be related to my mental health, so they’re sending me back to a psychiatrist probably to be put on numerous SSRI’s which initially caused my PSSD. They want to rule out any other causes before they go down any other route. They’re probably just having a laugh at my expense describing all these weird side effects from a drug they think is harmless. This is exactly the issue, didn’t even seem to care my penis is numb and my eyes are ruined, just said he’ll refer me to stuff after i go to the psychologist. I’m going to refuse everything they offer, but will they force me to take it? Let’s hope not, they where very pushy previously, he tried to tell me another antidepressants would fix my PSSD etc.

#26

Hang in there. I Dm’d you.

#27

I’m sorry about how your doctor’s appointment went @Devolution. I suppose that it suggests where he may think where the problem lies or as you say wants to rule this out, but it can feel so much more of an uphill struggle when they think that it’s purely psychological, and the problem with being referred to any specialist is that they will view you through their speciality. I had this problem with a psychologist I was referred to which only made me feel worse. All you can do is stay strong and stick to the facts. There are unfortunately many guys here who have similar experiences with doctors.

2 Likes
#28

If they think its mental health there is no point going back to your Doctor.

When I went to my local GP clinic about PFS they were worse than useless and tried to blame all my physical problems on “depression” which I didn’t even have at the time.

If your looking for a Doctor that may be able to help you I’d recommend going to see Dr Edmond O’ Flaherty in Dublin. He deals with PFS patients and is one of the few Doctors who will actually listen to the patient.

Hes not like most Doctors who think they know it all.

1 Like
#29

Thank you so much Mark i wasn’t aware anyone in Ireland knew about this condition, would it be possible for you to send me his details as I have no idea how to contact him, have you seen him yourself? I know im an accutaner but i think the same advice applies, i really just need to stop my skin decaying because right now i genuinely feel im going to die or be in a state not livable, the doctors appointment today made me extremely upset today and now some of my family thinks it’s mental too, that somehow im making myself worse, as if seeing my body decay isn’t traumatic enough. It’s like telling a cancer patient to cheer up because being upset is causing your body to damage itself.

#30

Thank you Scotsman, I won’t budge from what i know is true, I’m hoping if i go and show them my actual skin they’ll believe me, but due to past mental health, they’ll probably say oh you always had that… Or say it’s from aging… Yeah, sigh…

#31

So sorry to read your story Devolution, just wanted to thank you for having the courage to put it out there. I share so many of your symptoms despite taking a different drug. It’s uncanny really.

1 Like
#32

Here is Dr Edmond O’Flaherty’s contact details.

Yeah I saw O’Flaherty myself hes a great Doctor.

http://www.gleneagleclinic.com/doctor-edmond-oflaherty.html

Dr Andrew Rynne also deals with PFS patients but he is now retired from general practice.

#34

I know exactly how you feel Devolution. I also can laugh uproariously on occasion. But still dead inside. And also get dizzy and ill from minor physical exertion.

I’m so sorry your family aren’t supporting you as they should. I know what’s it like to have the doctor’s think you’re mad though. It’s crazy to me that this condition still isn’t officially recognised.

2 Likes
#35

This is so typical. It’s a shame, but be prepared for most of the people close to you to be in disbelief. Certainly you have shown them every bit of documentation available describing PFS and reports of depression and sexual dysfunction as side effects of Accutane. I think that is about all you can do. Not sure how the physical changes go ignored, but if you fall anywhere within what someone considers normal for a physical trait, they will ignore the change.

One of my very good friends went through chemo, and I think a bone marrow transplant, in his early 20s and talked about losing his libido, strength, and energy, and even mentioned problems with ED and severe depression. He said everything gradually recovered soon after the treatments were stopped and the cancer was put into remission. Thought he would be one of the few people to understand when I told him about my problems to explain why I was without a regular girlfriend for most of my life and regularly turned-down opportunities for hookups. Also tried to describe how this condition effects me mentally to explain why I am often distant and with a blank expression on my face.
…He told me that I only had these problems because I believed I had these problems. One of the most insulting things I have ever heard come from someone’s mouth and I felt an intense urge to smack him across the face at that moment and it could have turned ugly if it wasn’t a phone conversation.

It will be best if you try not to let it get to you too much.
Don’t expect anyone to understand except for those who are also dealing with PFS/PAS/PSSD.

I’m glad to hear you have found support here and we all are glad to have your support as well.

2 Likes
#36

Haven’t told my best friend, he wont understand. That’s shocking from your friend there.

1 Like
#37

I know how you feel. I thought I had EDS before I learnt about PFS.

I got PFS symtpoms after taking antibiotics (keflex)

I also have thin skin/muscle wastage. Sucks balls…

Have you made any progress?

1 Like
#38

Hey Jupiter, no unfortunately I haven’t seen any improvement yet, it’s still worsening 11 month’s later so I’m hoping it’ll eventually balance out, once it does I can then try tackle the issue.

How long have you been off the medication now? Did your condition start on the drug and get worse after?

#40

This is great Devol! I tried to msg you on skype , hit me up when you have time.

1 Like
#42

That’s jaw-dropping! Not only genital numbness, but he also experienced loss of emotion like so many of us.

There have been others say they were in contact with another person affected similarly by Accutane, but they wouldn’t have ever known unless they prompted them with questions about specific side effects.

I know of someone, through an ex-girlfriend mentioning it, who was on Accutane and also had some degree of ED in his teens. I believe he is a distant relation of mine, so this might point to a genetic component of certain side effects.

I have also been very open with coworkers about having these issues and gave a stern warning about PSSD to someone after he said he was on Prozac. He put his head down and mumbled something about things not being the same. I never pursued the subject after that.

This condition must be grossly under-reported and might be considered an “unspeakable” illness because of the stigma.

Did your friend have anything more to say? Did he recover from this completely?

1 Like
#43

Yes I do believe it would be very unreported, I myself am very open about stuff, always have been with mental health etc and am the same with this condition.

My friend said his legs, penis etc are returning to normal but he feels he still has some slight emotional nunbness, he started doing a few recreational drugs on nights out the past few months and im curious if the depression and emptiness he must of felt on accutane has led him down that path, i didn’t ask any specifics in that regard.

He actually said to me his acne is returning on the back of his neck which would probably imply the drug didn’t have permenant epigenetic changes in that regard, as for his skin its not as bad as mine but he can stretch it a little more than average.
He also said he wants to go back on accutane if his acne comes back and i asked why? He said quote “my minds already fucked up I don’t really care anymore”.
I don’t know if he means from accutane or in general but i do think it’d definitely be a contributing factor if not the leading factor, why would anyone who got side effects like these want to do back on a drug that messed them up? I told him he got very lucky, but maybe he doesn’t know what his emotions where like before, I’m not too sure i didn’t want to ask too much.

*Edit - I just remembered he also mentioned something about his vision being a bit off, like he can’t see the same as he did before. Like myself and many others.