Another victim of isotretinoin

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)?
Switzerland

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?
33, 1.78m, 62kg

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.)?
5mg every other day

What condition was being treated with the drug?
Rosacea

For how long did you take the drug (weeks/months/years)?
2 months

How old were you, and WHEN (date) did you start the drug?
33

How old were you when you quit, and WHEN (date) did you quit?
33

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

How long into your usage did you notice the onset of side effects?
1 month

What side effects did you experience that have yet to resolve since discontinuation?
Impotence, penis shrinkage, loss of libido

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

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

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

Misc
Prostate pain
Persistent Fatigue / Exhaustion
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?
None

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)
Test high-normal, LH normol, FSH lower margin of normal range, TSH normal, Prolactin normal

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.

Hi there guys. Im another victim. Took Isotretinoin low dose for 2 months. 1 month in the course I noticed some weaker erections and lower sex drive. My derm sad this is not related to isotretinoin. I continued some weeks without noticing improvement. Concerned about the sexual dysfunction I stopped cold turkey after 2 months in total. I had the typical crash: complete impotence, cold penis, numb penis, anxiety, depression, no libido, no drive at all, was suicidal. After this crash a really slowly and in a fluctuating way recovered a bit, mainly from the mental sides. Im 4 weeks off isotretinoin now and my situation is still complete impotence, tadalafil can provoke an erection, sometimes cold penis, yet shrinkage in flaccid and a little in erect state too, libido has come back to some point but still not able to do something with my penis. Anxiety, depression and some brain fog are slowly resolving, I can manage life more or less, I feel good with family/friends, could manage to work.
Based on all your stories Im really hopeless and think about putting an end to the suffering, but not out of a super depressed mood, but because Im not sure I wanna live impotent for the rest of my life.
Any advice of more experienced guys around here? Should I still wait or try something? How do you manage life? Sorry so much questions, hope you are all getting better, knowing what I feels like to be in this situation, I wish everybody but every single person a recovery from this!
Best wishes from Basel, Switzerland

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Welcome to our forum, David!

I am sorry you are going through this. The good news is that you have quit only four weeks ago. Many people experience improvements in their condition within the first months up to two years after they quit their drug. So, there is a good chance that your issues will get better or largely/fully resolve themselves and it makes absolutely no sense to consider any drastic actions.

Keep calm and good luck!
N.

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I’d suggest checking your hormones. Testosterone, free test, shgb, estrogen, prolactin and progesterone. Plenty of stuff you can try like TRT for example which is why you should check your hormones first.

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Thanks for replying and advices! Appreciate that!
Btw my test is 22.8 nmol/l (8.6-29.0), free test 0.406 nmol/l (0.198-0.619), shbg 46.0 nmol/l (18-54), prolactin 173 mU/l (86-324), tsh 1.48 mIU/l (0.33-4.49), LH 3.3 IU/l (1.7-8.6), FSH 1.5 IU/l (1.5-12.4), Estrogen and DHT not yet tested and neither 3alpha-Andro-Diol G

Hey guys! One more question: what scares me most at the moment is low blood flow to the penis with coldness and structural changes (shrinkage/narrowing), I feel like if I dont react I will loose my penis for sure. Any advice to at least gain some time like topical testosteron or sildenafil daily?

I am a big advocate for the daily cialis or viagra. Even if you are not having sex those nocturnal erections and erection in general could help prevent fibrosis. It also increases testosterone and muscle mass.

What your describing sounds like hard flaccid - look it up. Reversal of this condition is possible. You could go see a pelvic floor therapist and have them evaluate you. I also have this and am doing DCT - dynamic contraction technique which is an online course for hard flaccid / cpps.

I will try both! Thanks a lot for your support!

Hey guys! The last 3 days I was so weak and exhausted, could sleep all the time, Im scared this could be permanent. Have you experienced that too?

I got my dht and 3alpha-diol-g values: dht is in the upper third of normal range, my 3alpha-diol-g is 6.5 (1.7-35). I think the latter is pretty low for my age and taking into account my high-normal testosteron and dht suggests androgen receptor resistance. You agree? Is this the worst kind of PFS-like syndrome? Am I doomed? Any thoughts, Im really screwed up.

Little update: it seems Im getting better mentally, brain fog gone, concentration good, general energy levels improving, started having some oily skin in the face (but not as before), but my main problem is still severe ED, very few erections over the last weeks and they feel strange, penis is hurting sometimes after erections, cant masturbate. Really hoping for at least some little improvement there. I dont know how to continue my relationship. Would be very grateful for every advice!

Hey guys! Having a real bad day actually. My penis feels so dead. In 6 weeks Im reaching my 3 months mark and have no hope of a turn-around in such a short time. Do you have any advice other than still wait?

Sorry, I can’t offer other advice than to allow more time. You’re still very, very early in developing these problems. For many members, it took quite a bit more time than 3 months before improvements to various symptoms happened.

Thank you very much for your answer! Hope things are improving for you!

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i recommend doing your own research and learning more about the condition. in my opinion, a major piece of making progress as a community is being liberal with thinking and making theories. doing so can spark interest in the scientific community, for example, there was an italian study i believe that focused on neurosteroids and how they changed after courses of finasteride treatment. a new theory can spark idea for a study, perhaps on probiotics’ impact on our condition, or something like this. i think this needs to be more strongly encouraged in the PFS community to theorize and use the power of science.

Hey guys! Hope all of you are doing better. Just wanted to update. Im 8 weeks off the poison now and mental sides are defenitely better: most time no brain fog, good concentration, better sleep, no more complete emotional blunting. Still I suffer some fatigue and have lost muscles, I could not yet focus on exercise to see if I can gain back some muscles. My penis is still in very bad state: no sensitivity, complete impotence, tissue changes, gets cold often. This is what concerns me most. Trying to get more blood flow with daily tadalafil. When I use it 5-10mg the next morning I have a soft erection but nothing like before. I know Im still very early in the course, but my penis is so bad I have no hope to recover, even not to a bearable point. Im trying really hard to stay positive but my penis reminds me every day that this hope is foolish. Dont know how to continue… hope you all are making some progress

Hi @David, please can you take our survey, which helps us gather more info about our condition? It advances our cause and really help out.

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Of course! I wait until I formerly reach the 3 months mark and if Im still alive I will take the survey.

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Hey guys! Little update: I feel quite good again mentally, brain fog almost gone, depression much less, anhedonia reduced, sleep okay again. My dick is still completely dead, horribly shrunk, cold. Physically Im completely changed: I look like 16 years old, thin, no muscles, weak, thin skin. Its terrible. I fight till the 3 month mark also to take the survey but then I probably commit suicide, I cant go like this. Has anyone recovered from complete impotence?

David, please don’t commit suicide. You have to allow more time, much more time, before you can say your current sexual dysfunction will be long term. I’ve read numerous accounts from patients where they initially couldn’t achieve an erection but 6 months to a few years later recovered their sexual function or enough to be able to have a sex life. You ask about complete impotence; have you tried cialis or viagra yet? Some guys here have had success using them (as always, do your own research regarding side effects with PFS/PAS patients before trying them).