Accutane three times my story

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)? Ireland

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)

What is your current age, height, weight? 26 11 stone 5 ft 11

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Accutane

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 60mg 5 months then 20 mg 6 months

What condition was being treated with the drug? Scalp folliculitis

For how long did you take the drug (weeks/months/years)?
over a year
How old were you, and WHEN (date) did you start the drug? 17 22 and 23

How old were you when you quit, and WHEN (date) did you quit? 23

How did you quit (cold turkey or taper off)? cold turkey

How long into your usage did you notice the onset of side effects? 3 months

What side effects did you experience that have yet to resolve since discontinuation? sexual ones

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[x ] Loss of Libido / Sex Drive
[x ] Erectile Dysfunction
[ ] Complete Impotence
[x ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[x ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[x ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ x] Emotional Blunting / Emotionally Flat
[x ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[x ] Severe Depression / Melancholy
[ x] Suicidal Thoughts

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[x ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[x ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[x ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? tests getting more done tomorrow

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?

Anything not listed in the above questions you’d like to share about your experience?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
I have been on Accutane 3 times. Once when I was 17 and I had dry lips that was it. When I was 23 I got scalp acne EVERYWHERE and tried everything for it. It didn’t clear so I went on Accutane low dose that didn’t work so I went on a high dose. The reason I went on it was because I did when I was 17 and had little side effects and it worked for a number of years. Fast forward to 2018 the scalp acne came back after both courses when I was 23 and the side effects are still lasting. I am 26 now so maybe off it for a year and a half and I have zero not little zero libido, ED no connection with my penis and numb down there. I also have issues with how I think its hard to explain no emotion even and my sexual health is ruined. I do hope that it will come back that’s the only hope I have I’ve been with my GF for 9 years so I was able to talk to her about this and we are now both doing everything to get this fixed as she has seen the way it is effecting me. Does anyone have any stories or anything about it returning as a year and a half later I have zero and think this is it for the rest of my life. I am a shell of the person I was 3 years ago and would do anything to go back to my old self. To add to this three weeks ago everything went back to normal for a number of days and I was so happy but after it went back to not being there. I had just came of tablets for my skin and don’t know if maybe this done something to my body or maybe this is a sign of recovery. I don’t take drug smoke or drink so hopefully my body can heal itself but its not looking like its going to. Thanks

As of now the last two days everything works I was able to have sex a number of times in the last two days. The numbness is still there sometimes I have to tense to make sure its still working I hope this is it I have came off a tablet dapsone and maybe this was not helping with my side effects or maybe this is my body after almost two years going back to normal. Im going to stay off these forums for a while to see and take a break but I will let everyone know in a few weeks if I am still ok.

3 Likes

I’m looking forward to hearing the news from you. And I do hope the news will be good. I’ve had temporary recovery when my ED was gone completely and I could have sex a number of times a day, and even my refractiory period was like a couple of minutes. But the numbness was still there and I recognized that as a bad sign. And for me that lasted only 2-3 weeks. I hope it will turn out better for you.
Wish you all the best!

Hi Thanks this is the second time this has happened the numbness I would say is alot better maybe 60% back and my ED as of now is still gone. I woke up with a morning erection two days in a row now.

Maybe dapsone the table I was on was creating the issues as well? who knows I just hope it says getting everything tested tomorrow so will post the results when im done.

Thank you for telling your story @Derm ! I hope you’ll keep us posted about how you’re doing.

When exactly did you quit accutane?

sorry doctors got it wrong i think it was around Feb 2020

as of now everything is ok well working still zero sex drive I was told today by my derm that time is our friend and that this is very rare. I told him about our stories and how there is so many people who have this and he said he also has other people who are now coming forward to say they have it. I guess I was the first one to say to him about it as im now two years post Accutane he said we will try get you something and i said I shouldn’t have to im 26 and told you while I was on it and all he could say was he didn’t know it could be long-term until I said to him and he done research… so good luck guys I hope everyone gets better as this is shit and my whole life is about getting this fixed…

I guess everyone here has faced something like that. My doctor told me absolutely the same things you heard from yours. It’s hard to describe how disappointed I was to hear that.

Yea I might be different but the main thing is getting my ED away if I have no sex drive I wont care because I know it was Accutane that done it and not me just not wanting to have sex. The numbness and no emotions can also be looked over as I said this is for me everyone will be different. To have sex with my GF again with no problems has been a dream.

I had sex for a good 45 mins today no issues its like the switch has been turned back on

2 Likes

"The switch’’ is exactly how I’d describe the changes of this condition. Unfortunately, it’s still unpredictable for me. I’m searching for the way how to make it at least more controllable.

1 Like

Lets hope this is it on for good

1 Like

Tensing pelvic floor makes it more difficult to obtain an erection, for me. It also chokes the pleasurable feeling of orgasms. The opposite is far better. Completely relaxing the pelvic floor significantly helped my condition.

1 Like

Everything still working

2 Likes

Glad to hear it!
How’s your libido?

Still Zero but im not sure if its because im thinking about it Im wanting to have sex again but I think it might be because I can now more than wanting to do it.

Yeah mental and physical health intertwine somewhere. I think if I ever get healthy again that I’m definitely going to have some form of ptsd in regards to anything sexual.

See you can feel the difference my penis isn’t as soft so you can tell. I do agree metal health is a big factor but when you can tell the difference its not anything mental. I took meca root and got off my antibiotics. I was on Dapsone so maybe this was making the issue worse or maybe after 2 years I recovered naturally. I did have some sort of recovery a few times before but it didn’t last so far this has been the longest. My derm said if you see recovery it means there is hope I disagreed. I hope this lasts for ever now as me and my GF are planning kids. My metals side effects has also got better because I can have sex. One thing is I had a very bad crash mentally like thinking about death and couldn’t stop crying didn’t get out of bed for a few weeks so maybe this was something happening in my brain like maybe it was reverting back. Its weird that after feeling like that I started to go back to pre Accutane. I hope everyone reading this gets better If I do recovery naturally for ever I will always check in and ask my derm any question people may have. I also went off dairy and haven’t had it for a few weeks it seems to be improving my scalp folliculitis.

Many Thanks

3 Likes

Yesterday I noticed a small change my erections began to feel softer again. I am taking medicine for an ear infection and told myself this is going to make things worse. So I don’t know if it was in my head or if it was them. Many Thanks

Well, the mindset can affect the body, so it could be your belief about the medicine. Try to perceive it as neutral as you can.