I didn’t know that before taking the drug, I asked my dermatologist about the side effects and she mentioned dry lips. My plan is to sue her when I’m recovered.
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I was also angry at my dermatologist at the beginning, but that’s not her fault. They had treated quite a few patients with Roaccutane, I was the first one to face such adverse sides. The culprit is the manufacturer that doesn’t even warn about such things. If only I knew anything like that is possible I’d stop it immeadiately after the first signs. I still think it wasn’t too late at that moment.
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I’ve finally had my penile doppler ultrasound. So it’s a time for another update.
Well, as expected my arteries are totally fine and there’s no venous leak, no pathology found. The doctor who did the ultrasound also said that all my problems must have psychological origin. Kinda predictable. Now I don’t expect much of my urologist either.
Despite some small success I still have problems. I’ve managed to restore proper sleep(still a bit hard to fall asleep though) and I have long vivid dreams without crazy nightmares and anxiety anymore, also no waking up in the middle of the night without any chance to return to sleeping. Which is a real achievement for me, as I’ve suffered from bad insomnia for years.
I still have regular nocturnal and morning erections, but the spontaneous ones don’t happen without the pills. Also the erection quality seem to be recovering, I’ve noticed some positive changes and even the tip seems to me a bit less soft and increased in volume. This is especially noticeable after taking sildenafil. Also it could last as long as it supposed to (I’m pretty sure it’s already longer than average).
But I still have weak sensitivity and almost non-existent sexual sensations. And it’s way harder to achieve arousal now.
I have strong impression that after the postive effect of the antibiotic was gone, the link between my brain and genitals is distorted again. But my baseline is still better(at least for now).
Also I’m still fighting pretty bad case of acne (not severe on it’s own but the back and the chest are affected too) which is very frustrating alone. I decided to put on hold any attempts of dating until the situation gets better.
Cheers
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Hey mate; about doppler, this was expected as you said. We need to focus to brain from now on i guess…
But i am so happy that you managed to restore your sleep which is extremely important. I hope you no longer have any problem about that.
I agree with that distortion idea with antibiotics. It has helped while using but after finishing, it left us in a complicated situation. I will be extra careful if i would get prescribed any drug in the future because of that.
About acne, i am in the same situation. Some parts of my face and hair region has several acne it’s quite visible. My back and chest got oily and have several acnes. (not as bad as pre-accutane though) I think maybe that’s a good sign because that may mean our body slowly returns the base or maybe we still have tons of dysfunctions and acne just joins the party again 
Only positive achievement for me is, i decreased masturbation frequency to twice a day and i observed sperm density and quantity has increased. That makes me think the idea of “testosterone has lost it’s effects on our body” doesn’t make sense. At least in my situation; i produce sperm, i grow hair, my voice haven’t changed, i don’t have gyno and i still have good muscle/bone strength. I don’t think it’s something about testosterone. I feel just a little better after ejaculation and i believe that effect can be better if i wait more than 2-3 days. But it is no near what was it pre-accutane. I no longer feel any “post nut clarity” or emotion changes in brain. Anhedonia still exists.
Btw i realised something about my heart beats. While i was using accutane, i remember my heart beats were harder than usual for months. I wrote something about that in my story i guess. I remember my heart was beating so hard that my body was shaking the bed and i woke up bc of that sometimes. But at the same time, my erection quality was perfect at these times. Right now my heart beats are almost impossible to detect it’s quite opposite what it was. I think this makes me think some vascular issue but you proved that you don’t have any problems about arteries. Have you ever experienced heart beat problems on accutane? Is there any difference on heart’s pump strength before and after the drug in your case?
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Currently I have no clue what to check next. Tomorrow I’m expecting some more hormonal blood test results. I’m going to try another lab for one more progesterone test and that’s all. Unfortunately, I didn’t find a lab where I could have my allopregnanolone level checked. It might be another clue.
I’m trying to find a way to clear my skin without using accutane. It’s already quite challenging. I don’t want to think how I’ll continue to live if nothing helps. Sometimes I feel like I’m defective and should finish with my hopes that I could live a normal life.
I’m pretty sure the stress plays a significant role in what’s happening to me now. Somehow my skin was more or less fine for almost a year after I stopped taking the drug. And it’s definitely a sign that isotretinoin wasn’t able to make permanent changes in my body(at least not in the area it was supposed to). Also my hair is showing the initial signs of male pattern baldness(despite my hair is now way better than in autumn). And I never experienced muscle wastage or gyno too. I believe it confirms my AR receptors must be functioning. I haven’t read about it yet, so I don’t know is it possible to have them partially silenced.
Well, two times per day still seems a bit too often to me 
But I think I understand this kind of obsession. Even when I was almost deprived of my natural sexuality, I still maintained interest in sex, despite I couldn’t even masturbate properly,
Have you ever checked your heart? Do you know about any conditions you might have?
Unfortunately, I can’t remember if I noticed anything weird with my heart while I was on Roaccutane. I’ve had enough weird side effects above that. There were some palpitations after the Pfizer shot. So I’ve had ECG and heart utrasound. The doctor said I had mitral valve insufficiency(if I remember the term correctly). So sometimes my heart is indeed pounding harder. Usually during intense physical activity or under stress. He also said I shouldn’t worry about that and there’s no limitations in activity for people with such condition.
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Yeah unfortunately i don’t know what to check next either.
I checked my heart several times when it was beating harder while i was using accutane and everything was fine. I don’t have symptoms like that anymore so i haven’t checked it after accutane.
I’ve got my recent blood test results. I needed to check some hormones because of suspicious region in my brain MRI(could be microadenoma) and also added testosterone to the panel. Well, everything is fine, well in the normal range. T level is a slightly higher than in my previous test, seems to be stable during my whole PAS period. I’m going to check progesterone in a different lab, although I don’t expect much from it. I’m almost convinced my issues have nothing to do with hormones. Also I doubt that my AR were desensitized as I noticed I started to lose hair again. I decided to return to Aminexill as I don’t believe it can somehow worsen my condition. There’s not much to worsen, unfortunately. I have zero sexual sensations, no arousal, no orgasm, erection is just a mechanical process that happens to me during sleep or shortly after waking up.
I have been getting tired quite easily(or close to what people call “brain fog”, I guess) and my hands have awfully dry skin, I have skin fissures on my fingers.
Not to mention I’m still fighting acne with minor success. It’s all quite frustrating but I’m not giving up. Still working on improving my sleep and working out every day.
I decided to take again Ornidazole to check if I can repeat my recent brief success. I’ll post an update here.
Cheers
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Hey mate,
It’s sad to hear that your condition is not getting better and it’s sad again my condition is almost the same. I just recommend you to be careful about that antibiotic, even these antibiotics effected us in a good way we still don’t know how. Nowadays my only goal is trying to healing my gut flora and overall condition as you do. I look forward for your updates, i will make an update soon about my discussion with the psychiatrist.
Take care
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Brief update after consulting with my urologist. He was dissatisfied with my ultrasound results, so it was a bit prematurely to say my penile tissues are OK. Looks like there’s no venous leak and the artetia are fine, but whether I have any fibrotic changes is still unclear. He also prescribed me some pills and told to continue tadalafil. Concerning penile insensitivity he suspects some spinal damage. Honestly I doubt that’s true, but it could be an option.
My current state is stably pretty bad. The only positive signs are I still have night and morning erections and especially with a pill can get hard (except for the soft tip, I don’t remember when I had a proper erection last time, probably September-early October). Also I noticed I have almost non-existent pre-ejaculate now, which is also very weird, and some discomfort in the crotch area.
I still don’t feel any excitement, my libido is getting abyssmaly low. It resembles the state I was in during the highest Roaccutane dose. I’m scared because I’ve noticed I’n starting to lose any interest in sexual activity and getting aroused by women. It’s very alienating experience. Above that the music that used to cheer me up seems kinda unlikable now.
Also I’m experiencing serious issues in the professional field. There’re moments when I just can’t focus on a task and feel some dull pressure in my head. I don’t remember if I had this before.
Sometimes I feel like I could just burst into tears but I can not. I don’t remember the last time I cried. Probably, years ago. I guess, it’s the other side of emotional blunting.
Anyway, I’m not giving up, I believe I just gotta grind through this shit. I will post an update concerning any treatment results.
Cheers
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Self-reporting form
- Name of the therapy/substance: Ornidazole
- Dosage: 500 mg
- How often you took it: 2 times per day
- Status
- Still using [ ]
- Stopped with no lasting change to initial symptoms [X]
- Stopped with persistent change to symptoms [ ]
- Duration of use: Days [X] Months [ ] Years [ ]
- Response when you started:
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [X]
- Slightly worsened [ ]
- Greatly worsened [ ]
- Current response (if you’re still using) OR Response in the time before you stopped the treatment
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [X]
- Slightly worsened [ ]
- Greatly worsened [ ]
- Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [X]
- Slightly worsened [ ]
- Greatly worsened [ ]
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Well, it’s time to admit my attempt to recreate my improvement has failed.
During the last week of December-early January I was taking an antibiotic prescribed to me to treat blepharo-conjuctivitis. Surpisingly enough, I experienced some significant improvement in restoring my brain-genitals connection and having back some sexual feelings and arousal. Together with tadalafil course that helped me a lot and gave me hope for further improvement(at least I could function on a basic level at that time). Unfortunately, the effect didn’t last as it had been already observed in a number of similar cases and gradualy faded away to comlete loss of sexual feelings(erection quality stayed the same though).
A month later I tried to test if I could achieve the same effect again and started another brief course of the same drug from the same manufacturer bought in the same drugstore.
As a result no positive changes at all, just some mild case of dysbiosis.
Pretty much the same story with my previous attempt to re-create the recovery.
I still don’t think it was pure coincidence but kinda puzzled how it’s not working.
It’s two years since the development of my PAS(well, most of the first year I was on Roaccutane). Despite of many fluctuations of my symptoms and some brief temporary recoveries my current condition is still resembling the one when I was taking increased dose of Roa. To certain extent I’m better mentally now, but considering the appearance of the obvious physical changes I’d say the overall situation got worse.
I’m losing my hope that I can get better with time as there’s no positive dynamics. The last time I felt sexual arousal in front of a girl was 2.5 months ago, the last time I had a proper erection was more than half a year ago. I remember how much excitement I had from just holding hands or kissing on a date and now I feel pretty much dead. The memories of how sweet the romance and sex used to be seem so distant. And it’s just 2 years. It’s hard to imagine 5 years like this or even more.
It feels like I’m constantly under some drugs, that make my feelings numb and my mind kinda foggy. It’s hard to maintain concentration for a long time and I’m sleepy throughout the day despite of my restored sleeping cycle. I simply get up not feeling rested enough. That’s really embarassing.
I decided to make a list of my current positive and negative changes.
Positive:
- No more overwhelming anxiety. The level of anxiety I used to have was clearly unnaturally high. I believe the improvement came either from improving sleep cycle, or simply with time.
- Less insomnia
- I still can perform on a base level. It gives me hope that when I conquer my focus, I’ll be able to achieve my goals, albeit slower than I want.
- No observable muscle wastage. Working out every day is yielding results. I have visible abs now and could be doing men’s underwear commercials , if not the goddamn acne.
- My sexuality isn’t completely lost. Some time ago I started to lose all interest in girls and any sexual activity. It was so severe that got me scared. Fortunately, it stopped at some point.
- Severe PE, I was suffering from at some stage, hasn’t returned.
- My acne is slowly healing. Although the skin condition is still far from acceptable.
- I still have overall young appearance, although my face tends to look exhausted and a bit swollen.
Negative:
- Severe genital numbness is not going away or getting weaker. Almost no sexual pleasure, weak or non-existent orgasm.
- Lack of normal erection. The tip is always more-or-less soft, no matter how hard the shaft is. Decrease in girth. Erection in the root is somehow weaker than in the shaft. Also, very often I just can’t feel it at all and have to literally look to see if I have erection or not.
- Obvious penile curvature to the left, increased amount of wrinkled skin and veins
- Disrupted brain-genitals connection. Somehow I still can get erection from erotic imagery, but it happens almost bypassing my consciousness and feels kinda random.
- Some sort of prostate issues. Pain-like or discomfort sensations. Significantly reduced(almost zero) pre-ejaculate amount, and thick, jelly-like semen.
- Extremely dry skin(especially hands and face) which is not healing at all. I used to have very soft and youthful hand skin(softer than many girls have). Now my hands look weird. They didn’t lose all youthfulness completely, but got covered in creases and cracks, feel tight and dried-out. Nothing has helped so far.
- Acne all over my torso. Somehow my face is the least affected area, and most people don’t understand why I feel so defective. It’s exactly the same condition that made me try increased dose of isotretinoin. Only God knows how I regret about that stupid decision.
- Weird feeling of tension in my head, usually accompanied by brain-fog. It’s getting in the way of various tasks that require my cognitive abilities. I don’t remember when I first noticed it, but seems to be quite recent.
- Blunted emotions. Sometimes I experience flashes of extreme sadness when I feel like about to cry. Somehow I think it’s even a good sign I’m not completely numb.
- I don’t feel sexual satisfaction. Despite all this shit I still have some sort of needs(more on psychological level) and they just won’t get satisfied. It’s just another factor to put on a strain on my already tired mind.
The treatments suggested by my derm and urologist appear to be ineffective.
I don’t want to put up with the situation as I can’t imagine living as a zombie-like being. I need to search for any sensible treatment options.
P.S.
The horrific news about the war left me utterly devastated. It took several days to return to more-or-less functioning state from apathy and obsessive doomscrolling. And still I feel completely lost. Not only because of the shocking nature of war and the fact that I have relatives in Ukraine. The moment I first heard the news, I immediately realized all my plans were completely ruined. My life, as I imagined it to be, won’t be the same and the current perspective seems pretty grim. Basically, I lost my job and have close to zero chance to find the job I desire now.
I can’t say I fully recovered from the previous blow, when I realized my PAS is to stay with me for an indefinite period and I might be doomed to not have a family or just a girlfriend. And now my future is destroyed and there’re many tough challenges ahead.
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Hey man, it’s really sad to hear all that. I really understand every problem you are dealing with right now. I hope your relatives don’t get hurt and this pointless war will be ended soon. In this short life, we have to deal with PAS and another problems of life. It was already hard enough but now we have to be stronger than ever. I hope you find a good job with flexible working system which won’t push you too hard. I really get you about brain fog and how hard to focus or trying to work on something under this condition. I will get a job really soon it’s certain but i don’t know how i will perform with this insane brain fog and other side effects just like yours.
I started using panax ginseng two days ago, that helped me really well almost a year ago but i am not sure if it’s going to work the way it used to be. At that point every little thing which makes us feel any little better are welcome to me. My decreased libido and desire to almost anything besides libido is too unstable nowadays. Last week i somehow felt much better. I even went to sprint and worked out harder and my libido was even better. But this week i feel completely lost. Brain fog got worse. This is insane. I live with my family and they can observe me directly. When they see me like this i can feel their sadness too. I am sick of trying to hide what i have been through but there is nothing else i can do now.
To me; the main struggle is understanding if am i (or are we) getting better or worse? I remember i was much more better last year and all of my sides were about sexuality. And i am afraid to ask if everything goes worse, what will happen after a year or more? Anyways, let’s not lose hope and keep moving. I hope you and your family good luck my friend. I will keep you updated about ginseng.
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I don’t know why I’ve never mentioned tinnitus among the other side effects. At least since I started to feel this weird tension in my head, tinnitus(closer to some low humming sound) is always on. Although I don’t usually notice it throughout the daily activities. Feeling the pressure in the head seems to be not connected with the blood pressure surges, as it was normal when I checked.
This weird feeling in my head has intensified. It’s especially strong when I try to process any more-or-less sophisticated information, like reading a non-fiction book or following some tutorial. It’s very unusual for me. I usually don’t even have headaches or smth like that. Even after sleepless nights.
And now I’m overwhelmed with some kind of mental fatigue. My head feels so damn heavy, yet I’m not actually tired. My brain is like slowly imploding. Perhaps, it’s a sign of mental exhaustion of the recent days. Or my condition is deteriorating, Idk. I guess, I need some rest to see if my state’ll improve.
I’ve made another attempt to get a proper penile doppler today. I went to the head of an urology department in a hospital(by a recommendation). And this guy appeared to be a total prick. He didn’t even have a look at my blood panel, declared all my complaints nonsense and told me to see a psychotherapist in quite a rude way. I’ve wasted half a day and find this absolutely inappropriate.
Something is clearly wrong with my body and I still have no idea how damaged could be my tissues.
Fortunately, my urologist belives me and we’re looking for a solution. And despite he’s been unable to help me so far, nonetheless he gives me the impression of a very respectable person.
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It’s time for another update. Considering what’s going on around me now, all my personal problems don’t seem so significant anymore. But as it might be interesting for some people, I decided to write about my last observations and improvements.
First of all, I’ve finally made a proper ultrasound examination(with Caverject) and discussed it with two doctors. They confirmed there were no signs of structural changes. The blood vessels are in a good condition, no venous leak. I was told my soft tip problem was connected with the lack of arousal. That’s what I thought. My urologist suggested to try negative pressure therapy. I haven’t decided yet if I should really do it.
Now the key points:
- This tinnitus thing keeps haunting me. I suspect it could be side effect of my extensive use of tadalafil. Although it appeared more than two months later after i started taking it. Andd some short breaks(2-3 days) don’t change anything. It’s always on since waking up. At least the brain fog/head tension has somewhat decreased, I feel a bit better.
- I’ve tried vitamin F cream prescribed by my dermatologist. It did wonders on my horribly dry skin. It still feels kinda dry. But my hands have a healthy look now. No more fissures and peeling between the fingers. I do hope this effect’s gonna stay.
- My acne is healing slowly. It frustrates me a lot. My derm says my skin is recovering very slowly. Together with a few other oddities I attribute it to the isotretinoin consequences.
- For the most part, my sexual sides are still present. It’s been more than 3 months since I really felt a glimpse of sexual arousal. Despite of having erections I still don’t feel anything and don’t get excited.
I’ve recently noticed some improvement in sensitivity and some increase in libido. Erection quality also seems a bit better. The soft tip is slightly better, but still not 100% normal. I’m a bit puzzled what could lead to this improvement as my emotional state is currently much, much worse. I consider it as another evidence that these symptoms are far from being purely psychologic.
- Anxiety and depressive symptoms have returned. Also some minor sleeping issues. It was obviously triggered by the recent tragic events and the overwhelming feeling of helplessness. I haven’t felt that low in ages. Keeping it together isn’t easy as I don’t see any hope in the future.
I keep taking Tadalafil, Omega-3, Centrum multivitamins, and probiotics. I’ll post an update after finishing the course.
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Do you have a link? Amazing they even admitted to ED as a possible side-effect. It’s no big deal like rhabdo, joint pain, and hyperstoses from Accutane aren’t a big deal to them.
Sure, this is the article:
Some of the sides are marked as possibly permanent.
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One of the symptoms that led me here when I first developed PFS, was acne like I had never experienced in my life.
On my face and shoulders mainly, the acne was deep fluid filled pustules. They flared up in the same spots repeatedly, until I was sure scarring was inevitable.
After nearly a year, the acne subsided and has not returned, with no discernable scarring.
I know I’m not providing any answers, but just relating my story for potential benefit of others. Jim
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Reflex hyperandrogenicity possibly?
Increased shedding after stopping Propecia has been attributed to this rebound effect.
Accutane never had a profound effect while I was on it. Sebum was coming out of my pores like some sort of deranged pasta press for a few days immediately prior to my post-drug crash. It’s common for people taking Accutane to experience a “flare” or “purge” phase before it starts working its sinister magic, but they don’t usually end up like us.
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