Another victim of isotretinoin

Member Stories
#24

All of them, but I hit a “peak” after the initial improvement that stuck with me all through my 20s , with a rollercoaster ride of ups and downs, and it has been a slow downhill slide since then, probably due to age compounding the underlying issue(s).

Strangely, in the past 5-6 years, the constant fatigue, weakness, and muscle and joint pains, have subsided, while the sexual side effects and emotional blunting have worsened.

This seems to be more dependent upon the individual than the drug they took. Lots of cases of PFS recoveries after the first few months and I’ve been noticing more and more PAS patients saying the same. Years ago, I don’t think the sexual side effects of Accutane were recognized at all, so you only heard from people who were dealing with it for years looking for answers as to what the hell this drug did to them. This is only speculation, of course.

Thanks, same! If I was in your position, I would make the best of things for the time being and try not to dwell on whether you will recover or not. Easier said than done, but it will really do you no good to obsess about it… …Whether you recover or not, please report this directly to the drug regulatory authority in your country, rather than through a probably nonchalantly-dismissive dermatologist.

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#25

Thanks for your advices! I will do so and trying to force my urologist who believes in PFS/PAS to publish a case report😊 and the derms are all ignorant I never ever go to see one

#26

Hey guys! Hope you are doing well. I would like to give an update now that I reached the 3 month mark. Mentally I recovered greatly, I would say I feel nearly my old self again which Im extremely thankful! My persisting problems are still the sexual sides. Im recovered from complete impotence luckily but have still have ED of course. Strangely my libido is coming back slowly but my penis is not working as I would like too. Still have some shrinkage but a little less in the last 2 weeks. My biggest issue is that from time to time my penis and balls get cold (even on low dose tadalafil daily). When I relax and focus on not freaking out I resolves again. Really concerned about that as reduced blood flow can cause fibrosis. When Im turned on and relaxed I can get a decent erection and have an okayish orgasm. Incredibly fluctuating though.
Have you guys experienced these cold penis attacks too? Would you recommend to “train” the dick by trying to get erect every day or do you think thats counterproductive?

#27

In general still hoping to improve my ED because of my relationship. Oh and of course I will take the survey in the next days! Thank you guys for support! You are all doing a great job and help people more than you imagine

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#28

Sounds very similar to my penis after finasteride

Mine retracts inside without stimulation however I still get morning erection( lower quality) and can have sex and maintain erection. But on flaccid mode the penis shrinks like crazy

#29

How long have you been off the drug? Do you have cold genitals too?
I saw a traditional chinese medicine guy who recommended me taking a herbs mix, it contains also some tribulus and curcuma. Im scared to take it, because Im afraid of making my condition worse.

#30

I would give it at least a couple more months before any tribulus or anything. And don’t trust anyone who isn’t a western scientific medical worker (and maybe not even then!).

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#31

I would like to give a little update (4 months off the drug): mentally Im almost recovered. Sexually only slight improvements. I have less hard-flaccid-syndrome (maybe because of generally more relaxed). At best I can masturbate 2 or 3 times a week but ony with high visual and physical stimulation. Blood flow still generally impaired but maybe slightly better because I experience less cold penis sensation. Still quite numb penis though. And low libido. Dont know why my mental sides gradually went away but my sexual sides seem so persistent.
Oh god, its so hard to continue… but Im not anymore suicidal (like I was in the beginning).
Sometimes I wonder if it is ridiculous or stupid to hope for improvements…
Anyway, hope you are all getting better guys!

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#32

Hey guys! Could need some encouraging words. Today I noticed that my penis is getting even smaller in flaccid state. Couldnt achieve an erection since a few days. Man, I think this will not have a good end. Really tempted to take some actions, tribulus or Trt or something. What do you think, should I just lean back and wait more time?
I feel chances are against me. Im thinking of breaking up my relationship because Im too embarassed being so low sexually.

#33

I was ina similar boat to you. One pill of fin then impotence the next morning. My erections slowly started recovering then at about 3 and a half weeks my libido shot up. Still could only get an erection with gf and concentration, but once there i was 120%. This is until I crashed a couple of days ago and couldn’t get it up. I have to believe that a partial recovery means it could happen again as I felt so good in the three and a half weeks I was sexually more competent. Depression and anhedonia lifted too.
Has your recovery progress sexually been in ups and downs? If so, reason to believe it will improve again

#34

Yes, it was a zig-zag-recovery with a positive trend, now it seems I lost all improvement in sexual function. Really hope this is like a crash and it will get better with time.

#35

Have you ever crashed completely then recovered before?

#36

Yes, in the beginning I had a super hard crash from which I recovered in the mental sides. The sexual sides were stubborn but some slighg improvement was there (look at my posts).
Now I experience this sudden down in sexual sides. Really frustrating.

#37

Me too man. Sexual sides returned to post fin for me after such good improvements. And now the mental sides have all come back it seems. Depression and 24/7 anxiety.
I hope this all gets better again with time. I guess fluctuation means there is still hope.

#38

Hey brothers! Little update 4,5 months off the poison: I managed to improve my erectile function with daily cialis and L-Arginin, but still pretty lame erections, not fully hard. The mental sides are still almost recovered, only some minor issues in stressful situations which is manageable. If only my dick would work again. The weird thing is that my libido would be okay most of the time, which is sad.
Can I still be optimistic? Is it true that most people improve up to 1-2 years?

#39

Improvements are great to hear bro. Are these psychogenic erections or with stim?

#40

Hey guys! Sorry for the stupid question but where is the link for the survey, I was searching for it but didnt manage to find it. Maybe someone could give me the link? Thanks

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#41

Hey guys! Update 5 months off: my dick is so shrunk its embarassing. Cold feeling of genitals its getting less, sensitivity is better too. I can manage now to masturbate once a day (i use porn) and I regularly get moorning wood but still not 100% hard, in fact I never get 100% hard. I regularly take cialis at night, pycnogenol and L-arginin which all helps with better blood flow.
The weird thing is that my libido has come back to some extent. Im so worried about the physical changes. I think there is fibrosis which is irreversible I cant imagine that this could ever revert. I feel completely hopeless

#42

Apologies for the late response.

A detailed explanation about taking the survey can be found here:

Thank you for participating.

#43

Some people hit by isotretinoin have been helped by tadalafil and/ or bremelanotide.