I seem to have ed from accutane even after ending the treatment and it doesn’t disappear. I’m 18 and took 10-20mg for almost 5 months but I stopped the treatment because I noticed that I got ed. Even after stopping the treatment which is 2 months ago my ed hasn’t improved much yet. I took ginseng zing maca and tribulus to go against this but it doesn’t help really much. I don’t know if it’s important but my testicles shrank to almost half their size and my ejaculate is really watery?. Has someone made the same experiences or anyone that knows how to go against these side effects? My life is just starting and I don’t feel like I could live with this forever…
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My experience with Accutane was similar and I have yet to find a treatment that works. That was over 20 years ago, and while I did have some significant improvements ~4-5 months post-drug, I never fully recovered and it has had a major impact on my quality of life.
Please report your side effects to whatever regulatory agency presides over your country.
The primary goal of this site is to encourage scientific research into persistent post-drug side-effects and part of the difficulty has been the relatively low rate of reporting to regulatory agencies, especially where Accutane is concerned. Sexual side effects during treatment are not even recognized in the US.
If you are still experiencing symptoms 3 months after your last dose, please post a member story and consider taking our post-drug syndrome survey.
I hope some relief comes to you with time. It’s not uncommon in the early months of the post-drug syndromes discussed on this site.
stay calm first. If you have severe depression I have heard of success with wellbutrin. There are 4 options I have investigated for treatment.
- Rick Simpson Oil ( https://www.reddit.com/r/DrownedIce/comments/airftd/recovering_from_postaccutane_side_effects/ )
- Mifepristone ( https://www.pasforum.info/threads/mifepristone-worked.167/post-472 )
- psilocybin mushroom
- Finasteride (Too risky, don’t try this as much as possible. https://www.pasforum.info/threads/treatment-pas-recovery-using-finasteride-possible-high-risk-option.3/ )
These are not scientific knowledge, they are not guaranteed to heal you. But the healing claims came from these substances. Do not give too many chances to supplements, wait for natural healing for a while.
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Any idea which of these were with normal hormone levels?
Thanks for your help but I don’t think that I would be able to get my hands on any of these because they either are illegal or have to be handed from a doctor
Hi Michi,
Sorry to read your story. As @Dubya_B says, many recover without intervention.
Please, do not start scouring forums for advice on how to fix things. The irony of most advice given is that those offering it are rarely recovered themselves. That is to say, why are the people who haven’t fixed things telling you how to? Why haven’t they been successful if they have the answer? Also, beware those who might try to sell you something or those who do not have a plausible story with enough history to back it up.
In general your symptoms are not uncommon here. The general advice is that a number of substances bring people here with some regularity. Anti depressants, hair loss treatments, accutane are the most common, there are others including skin creams and health supplements.
At this point it’s probably fair to say that you have a vulnerability to all those substances. We have generally seen that subsequent exposure to those substances can result in catastrophe. Avoid them.
Also avoid substances which are 5ar inhibitors. This could be in food or vitamin tablets. Check hairloss websites who offer tips for foods to eat to stop hairloss and do not eat them. They will often be 5ar inhibitors.
This is a lot to take in and at your age it is a hard thing to deal with. Rest as much as you can, avoid stress and don’t do anything rash.
If you are planning on taking advice from an Internet forum, try to take some time to think it through. There is a lot of misinformation, delusion and lies out there. People can seem very knowledgeable, when in fact they are merely repeating things they’ve read but don’t understand.
Do what Dubya said and get your symptoms reported. This is a real problem, one that you have because too few people speak up. The more we can tell the world this happened, the more that will be done about it.
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So there’s really no help for me…? There is actually no way that I can heal from it? Just because I took pills against akne in a low dose for 5 months my whole life is ruined forever? That can’t be it right? I feel off the whole time and accutane caused so much side effects in the last month where everything was so perfect it was almost a dream. And now that will be shattered forever? How are you all able to deal with that? Is no one here that went to a doctor that gave him clear advice?
There’s still a good chance you will improve given that you are in the early stages of this.
Nobody can deal with this well. Only the best we can. And doctors are almost entirely dismissive of this problem. The American Academy of Dermatology has recently been releasing statements refuting the possibility of ANY long-term side effects, going so far as calling them “myths.” To them, only good things are possible with the drugs they prescribe.
How did you manage to get over with it or even deal with it? Did you never try seeing a doctor for help? Did they never prescribe you something so that you can have sex? Or did you never try any supplements? I’m sorry for asking so much but my current situation is so damn stressful since I have a girlfriend and i can’t believe my life is going to be ruined because of some stupid pills that i took because my doctor thought it would help to get rid of my acne without any big consequences besides dry lips…
I’m not over it. I’ll never be over it. The doctors were entirely unhelpful. The best could only throw their arms in the air and give up or recommend PDE5i drugs. The worst would push SSRI drugs (which made sexual symptoms worse) and insist it was all because of depression or anxiety. A few even made accusations that I was lying for attention or abusing steroids. Tried too many drugs and supplements to list and trying to treat this with anything more than living a generally healthy lifestyle has only done more harm than good.
You can find stories of the experiences of other post-Accutane patients via this search:
https://forum.propeciahelp.com/search?q=accutane%20%20%23member-stories
But you’ll find many on this site have the same problems after using Propecia, SSRIs, and other drugs and substances with endocrine-disrupting properties.
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I’m going to a urologist soon because I made a appointment and you all really think he wont help me? What should I tell him if he has no clue or doesn’t believe me? This all is so confusing for me tbh… should I just let him check my hormones and hope the problem is just low t that was caused by accutane? Or will he not even accept making a test because he doesn’t believe that a acne medication gave me permanent ed for the rest of my life? Can I even take viagra or does this cause even more problems for me? Can I do anything to get a normal boner again??
Go and see him.
My T was below threshold almost non existent when I saw my uro after accutane. 6 months clomid helped it get back to low normal ranges.
Docs are not interested in what got you there umfortunately.
Don’t push for PAS too much.
Be pragmatic.
Stay positive and hopeful.
Every case is different.
But weren’t you scared of the side effects from clomid? I mean where all in the same boat because we didn’t care about side effects because we only had our sight set on one stupid thing. Do you have side effects from the clomid? And did you even have ed to begin with and did it get better through your medication with clomid?
The problem with low t is that there aren’t many ways to change it. I’m 18 I can’t just hop on t for the rest of my life
I am not advocating clomid, just telling my experience. I am scared of Clomid, TRT, cialis any medicine or supplement after accutane. However if doc sees any way these would work I will try it. One thing I won’t do is take these without doctor provision.
Every case, everyones response to it is different.
Give yourself time. You will likely recover. If doc sees anything abnormal best to intervene asap, will increase chances to correct it.
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A urologist I saw after first seeking answers to PAS symptoms said my T levels were low and this led me to push an endocrinologist to prescribe TRT, even after my levels began creeping back into the 550ng/dl range. 3 months of TRT didn’t help and I worry it set me back in what appeared to be a natural recovery of T-levels. Either way, my symptoms were worse with natural T in the 700s around 30 years-old than in the 300-500 range in my early 20s. So, the reluctant intervention of a doctor may have done more harm than good. It’s a tough call.
I was in the UK when I realised I had low T after accutane. It took me a year to get back to my home country to see an urologist. I sometimes think if I had the clomid treatment earlier my T would recover to in range values.
Understandable. I also used clomid to boost T into the 800s temporarily without symptomatic relief during that treatment cycle. Saw in another thread that you aren’t aware of potential side-effects of SERMs. Don’t have the details, but long-term issues after tamoxifen are discussed on breast cancer survivor forums (mostly fatigue and joint problems, if memory serves) and at least one member here had what seemed to be permanent vision problems from clomid.
Treatment vs non-treatment is always a risk and there are strong advocates of both methods. Really leaves it to the individual to decide what is best for them.
All said, simply getting T-levels tested is practically harmless, unless you have a phlebotomist with shaky hands.
Thanks for the help and tips guys! I really have to say this is all hard to deal with but its nice when some people give you some advice or hope in such times. Does someone know anything about vitamins and macros and how they could affect the ed? I’m currently bodybuilding so I’m eating pretty much and I’m also taking some vitamin supplements for my acne. I’m taking green tea extract a multivitamin, vitamin c, zinc and fish oil. Also some antioxidants supplements. Is anything from that known to help raise t or help with the ed or could anything even make it worse?
Michi,
I am sorry you are going through this. My son is damaged and this is a never ending nightmare for him. Not only ED, but issues with his eyes, gut, bones, attention span, etc…Nightmare and heartbreaking. I will note however, he has improved over time. He is accepting what has happened and is going to college, etc. Life goes on. It is still early for you. Your body may recover naturally a bit. You are not alone.
I am watching this topic for my son (look up my other posts). He is damaged. Some things got better, others got worse, but yes, he is impaired. Others will have to chime in for the ED. I DO know that Zinc has issues, so maybe stay away. I think bodybuilding is a good thing, if your body can tolerate it. Time. You still have time on your side. Ensure you have good gut health, so your vitamins absorb. Be very, very cautious of any medical and most vitamin treatments.
As for a Uro, expect them to not believe and dismiss you. It matters not. They can NOT do a damn thing anyway, except maybe order blood work.
(My son’s T is about 525, up from 471)
My son went to a Uro this week. This Dr told him he did NOT have ED, refused to do ANY blood work, hardly glanced at his old blood work, told him to see a Psychologist and tossed some Viagra at him. The Dr said he had never treated a patient with ED from Accutane, although he had heard of it, but “people on the internet say things.” Waste of time and money.
IDK how others will take this advice…but here it goes… As far as interpersonal sexual relationships, one way to get around some of the ED is to focus on the other person’s pleasure. Increase your tongue game by 3 fold, your curved finger and toy game. Make her an orgasm, once, twice, 3x before you do anything, and then again when you are done. Don’t make her sexual experience about trying to get/keep you up. I am gay and I can go all night long. Never a complaint and I have no penis. I can go all night and I can’t kick em outta my bed. 
I am NOT trying to be tacky or a braggard, I am just saying that your penis working perfectly is not the end all be all in sex. You can still make a woman very, very happy (and do we not all want happy partners) with ED…
FYI, there is a government inquiry in the UK and they are asking for the public’s information. They are considering stronger warnings, etc. They NEED public feedback. Only 5 questions. So, take a few minutes and fill it out. https://www.surveys.mhra.gov.uk/5fa2caf33414eb1dd21958ad (You do not have to give your real name if you do not want to)
Anna Nim
I’m so exhausted from this whole thing. I’m so close to ending my life I just can’t take it anymore. On days where nothings happening in may pants and I nust can’t get it up even a little just hurts me so much. My girlfriend understands it now but who knows how long this will continue. I’m so damn helpless and nobody’s seems to be able to help. I’m just so glad I could talk to you all and that I’m not alone. But the thought of not being able to recover at all just shatters my heart. I just want hope or at least a little bit of results or a small positive change. I just can’t take it any longer… I’m seeing a urologist in some days but from the things everyone told me here and from what I’ve heard he won’t be able to help. And even If he prescribes my viagra which I would definitely take to just be able to have sex with my girl I’m pretty sure that viagra will make my problems worse… has anyone experience with the accutane ed and viagra. Or does literally no one have any clue on how to get even a little better. Or how to get it hard. I’m so done with this. I know I’m asking for damn much but can someone tell me what to do? Like should I continue taking zinc, ginseng, maca ,tribulus? Should I stop taking the multivitamin which contains vitamin a? I’m also taking vitamin c green tea extract and fish oil. Is there anything bad between these things? And also I’m bodybuilding so I’m eating lots of oats eggs and fish and carbs at all. I’m vegetarian though since that always helped my skin
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