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)? US
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?) Google
What is your current age, height, weight? 34, 5’8", 170
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? isotretinoin
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 20-40mg/day
What condition was being treated with the drug? acne
For how long did you take the drug (weeks/months/years)? 5 months
How old were you, and WHEN (date) did you start the drug? 20 /2005
How old were you when you quit, and WHEN (date) did you quit? 20 / 2005
How did you quit (cold turkey or taper off)? cold turkey
How long into your usage did you notice the onset of side effects? a few months after quitting, but it took me a long time to figure out it was the drug.
What side effects did you experience that have yet to resolve since discontinuation? libido and sexual function are the main problem
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
[x] Complete Impotence
[x] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[x] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[x] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[x] Confusion
[x] Memory Loss / Forgetfulness
[x] Stumbling over Words / Losing Train of Thought
[x] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[x] Severe Depression / Melancholy
[x] Suicidal Thoughts
Physical
[x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[x] Genital numbness / sensitivity decrease
[x] Weight Gain
[ ] Gynecomastia (male breasts)
[x] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[x] Dry / Dark Circles under eyes
Misc
[ ] Prostate pain
[x] Persistent Fatigue / Exhaustion
[x] Stomach Pains / Digestion Problems
[x] Constipation / “Poo Pellets”
[x] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[x] Increased hair loss
[x] Frequent urination
[x] Lowered body temperature
[ ] Other (please explain)
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
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?
I’d just like to note I’ve taken the survey here and filled out the RX List warning for accutane on their site.
Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
Wow, holy shit, those check boxes were a wake up call… I’ve had most of those symptoms at one point in time or another.
So my story starts in college, I was going into sophomore year and still had moderately bad cystic acne on my face. I would get some huge zits that would make me so self conscious I didn’t want to leave the house. I had been dealing with this zit problem since like 12 years old and I was sick of it, I thought I’m in college now, I can’t have zits anymore. So I got a script for Accutane… which was WAY too easy. Derm said it was safe, minor side effects, didn’t warn me about anything, didn’t do any blood tests, just told me to take it and come back in a month. Even the “black book” at the time only listed birth defects as a problem.
Of course, I didn’t research the drug (was there even any information on it back then?) because I was a dumb 20 year old and had no distrust for doctors. Why would they steer me wrong?
So I take it, every fucking day, like 20mg to start. Had all the side effects. Lips were bleeding, skin was cracking, BUT my pimples were disappearing.
Long story short, I went back 4 more times to the derm. 2 more 20mg refills and (what I now believe to be the straw that broke the camels back) 2 40mg refills. So 5 months of straight poison.
Now the “crash” came a few months after I stopped taking the drug, I’d say about 4 months later. But, at this time I was going through a major breakup with my high school girlfriend, and literally blamed everything on that. (nothing to do with accutane I might add, we had other issues).
First red flag, I found as I was commuting to college I was randomly crying in my car to songs on the radio… THAT never happened before, but I thought I was just depressed because of the breakup. Second major red flag, I got a new GF about 6 months later in Junior year, she was hot as hell, but… I couldn’t get it up. No matter what I did, it didn’t work. I went to the doc, and of course he blamed it on depression, gave me a script for viagra and sent me away. So here I was, 21 years old, popping a viagra every time I wanted to fuck this girl. Sneaking off to the bathroom to take it.
A side note: ED had never happened to me before this. I had multiple partners in high school and I remember right up until I took accutane having sex with no problems at all. Didn’t even think about it back then.
So, other side effects were creeping up while I was dating this girl. I remember her calling me a “sweaty motherfucker” because I’d sleep over and wake up the next day drenched in sweat. Also, never happened before.
Eventually we broke up, I graduated and got my first real job. I was depressed as FUCK. Like, not wanting to get out of bed everyday. I had never been depressed before, so I didn’t even understand what was happening. I also had severe exhaustion. Mind you I had a new, awesome girlfriend at this point who was super supportive. Of course, I blame my depression on… having my first real job!
The exhaustion got so bad that I was falling asleep while driving. Every day. I would have to pull over in a parking lot and sleep until I could make it home. The depression got so bad I would pull over on the way to work and cry on the side of the road.
This went on for so fucking long… other symptoms I was noticing was that my balance was all fucked up. I’d be walking down a hallway and feel dizzy, or trip over my feet. I had constant brain fog, couldn’t think or remember anything. Felt like I was floating through life, like I wasn’t really me.
Now I don’t know when it happened, it was years later. But eventually I was like “what the fuck is wrong with me”. I had always been an super energetic, fun, positive guy, and here I was just like in a constant fog. At some point I started googling and I found… nothing about accutane, but maybe it’s a fungal infection!
So I found the curezone website… god, if I could take back everything I tried while reading that shitty website. DO NOT GO THERE. So one of my main symptoms was my tongue had developed this layer of white filth all over it, that kept coming back even if I scraped it. Curezone told me that was a candida overgrowth and to try antifungals, oregano, turmeric, all the things that were the opposite of what I actually needed. Of course I didn’t know this at the time. I thought candida was causing all my symptoms.
Tried antifungals, they did absolutely nothing. In fact, none of the things did anything, and really all they could have done looking back was make me worse.
Cut to, my supportive girlfriend breaking up with me because… we never had sex! Gee, I wonder why.
So now I’m alone again and I’m like, I’m going to find out what the fuck is going on here, that was about 5 years ago.
Cue, the acne.org thread on “long term side effects of accutane” and HOLY SHIT, eureka! That was me. All these guys had the exact same symptoms as me.
I brought it up to my doc, he REALLY didn’t think accutane was the problem. I convinced him to do some bloodwork and, well it all came back okay. Except for low LH and FSH. At least, everything was in “normal” range. I believe Test was around 600.
Then, years later, I found this site. And here I am today, still hoping for that breakthrough.
Now here’s the thing, I definitely don’t feel as bad mentally as I did years ago, and I don’t know what to attribute that to. I’m not crying randomly and I’m not falling asleep while driving. But I am still exhausted most of the time and I have little motivation or energy. My balance has improved, as has my confidence, but then again it’s been about 15 fucking years since I took that poison.
Here’s what I’m trying now:
Exercise (although I’m gaining almost no muscle)
Probiotics (not sure if these do anything besides make me shit)
Tribulus (might have done something the first time I took it, a little warmth, but not since)
Vit D (I honestly don’t think it does anything)
Things that I have tried include just about everything, besides TRT. You name it I have probably tried it. Except for some of the new shit you all are trying on here.
Now here’s just a little side note: If I do decide to health-check my dick and fire up some porn (maybe once every 2 weeks, if that) if I ejaculate I can count on feeling like absolute SHIT for like 5-7 days afterwards. I don’t know what high E feels like, but I would imagine that is it. I’m emotional, foggy, tired, my eye gets droopy, I get really cold. So for now I’m going to try no-fap and just see what happens.
In conclusion: nothing has helped my libido/ED problem, even when I’m feeling better mentally. Hell, I was with a chick last night and I was PRAYING she wouldn’t make a move because I just knew (I could feel) my dick was dead. I read articles of accutane causing damage to the hypothalamus and pituitary gland and I’m like “welp, if I took poison that caused brain damage, then I guess I’m fucked”. I’m holding out for hope though, that somebody will stumble upon something that helps bring me back to who I was before I took this. It’s been almost half my life with these symptoms. I just want to be normal and have a family and I’m getting fucking old.
TRT is up next if I can talk myself into it, I’m scared to death of it, but nothing else has worked.