Well obviously I can’t blame anyone cause I got this disease from natural OTC supplements (soy, licorice, milk thistle). So I’m even more angry cause I didnt even took a drug, yet still have to deal with this bullshit.
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Hi Trav
Thankyou for taking the time to write your story I too can relate to so many parts of it it’s unreal
I’ve been on this road for a long time i think things were a little more confusing for me to start with as i was using finasteride anabolics and high doses of ibuprofen at the time so i wasn’t sure if it was partly the steroids or the combination of all three the whole experience started just like yours and continues to this present day.
It’s all a roller coaster from hell it starts from the top when you realize something is going wrong and swiftly spirals out of control dragging you down into hell where it stops to leave you in that shocked state of confusion and despair feeling half the man you once were.
I cant understand how a drug can take away so much from guys creating a catalogue of sexual issues and mental issues that the medical profession can’t help with.
It’s all beyond belief.
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Same to me. It proves that it is more likely to develop PFS when you play with dosis or take- then stop then take again…than just taking finas during a long period of time. That is, i think, because the body cannot manage such an hormone imbalances.
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This.
Your story shows that although we are getting the word out and people are coming to the site prior to taking finasteride, as long as it is still readily available and the labelling remains inadequate, there will always be more men falling victim to this drug. I pray for a time that this is taken off the shelves or at the very least black boxed.
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I crashed on ketokonzale/saw palmetto shampoo alone. I feel you man, I’m 23 and my life is very dark right now. I have very similar sides to yours and many others on the forum. I hope to god there’s a breakthrough with this PFS and all of us can go back to normal or be treated. I’m on TRT almost been 4 months with really no improvement. I’m not worse but I’m not better which is crazy my body is androgen resistant at this point. These 5AR inhibitors are truly something else, I can’t believe it doesn’t effect 100% of men who take them after knowing what it’s done to all of us! Hang in man I have good hopes something will come along eventually. I believe all 5AR inibitors should be taken off the market for hairloss I hate seeing so many guys falling victim to this…
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Respect for posting your story here, I can relate and your story sounds similar to mine. I hope you can find a way out!
The thing pisses me off the internet is full of the horror stories that we have been through most of them are more or less a carbon copy of each other the same symptoms the same issues the same cause yet we are all more or less ignored by the drug manufactures and medical world it just doesnt make any sense…
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This is why it’s important that we assemble here, that as many people as possible sign up, take part in the 23&Me project and take our survey when we publish. Every registered user will receive an invitation to the latter. There’s a thread about the former here:
If we have a large enough group that we can point to we will be able to be taken much more seriously.
These are the first steps to our liberation but everyone needs to do their part on the way.
Anyone reading this who hasn’t registered here, I urge you to do so. It’s free! It takes 30 seconds.
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I think where we are now is different to a few years ago. If you consider the rxisk.org site or even the greater awareness of post selective serotonin re-uptake inhibitor sexual dysfunction, not forgetting what has and is being achieved both with the foundation and here. Sadly there are myriad victims of numerous pharmaceuticals that in isolation go under the radar with their own personal despairing experience. The system is definitely failing patients and horribly skewed towards the monetary gain of big business, but the fact that connections between certain patient groups are being made and scientists etc. are working towards a common end will hopefully make all the people who have been affected by endocrine inhibitors be heard.
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invictus can you explain how you got pfs from milk thistle ? i thought pfs occurs because of reduction of a hormone that comes back quickly after quitting. my problems started after quitting.i thought there must be a upregulation of the androgenreceptor to get this rebound effect. sometimes i think this problem is so rare that i have something else. i get fucked up because of the german hair loss forum that recommended to cycle propecia. otherwise i would have never get it. sry invictus for my previous post. i believe you …
Thank you guys for the replies. It means a lot. I’ve read hundreds of stories on here but, the nature of this illness is obviously super personal and hard to discuss. Particularly when you are still going through it.
I didn’t waste my time. Most dermatologist prescribe this stuff off without any sort of consideration. He should be fired due to malpractice and I am going to make sure I log everything I can. I’m sure if i went back to him he’d feed me some bullshit about how he’s been on it and he’s fine (despite him sounding like a fucking robot and completely devoid of any joy) whether he recognizes it or not.
Sorry to hear that. It’s very difficult but we’ll prevail. Also I agree about getting it off the market but companies like Him’s are going to open up a whole new demographic with their aggressive marketing campaigns. As sad as it is, having more people take it might be a good thing. The larger the sample size, the larger the people with permanent adverse affects who condemn this poison and ultimately more pressure to find a cure.
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It is beyond belief. One of the things I think PFS sufferers can all agree on is that not only is this an absolute nightmare, there is very little tangible evidence of it’s existence (though that is changing with studies.) Imagine having any kind of life-changing illness before its discovery, you would feel like a nutcase l and nobody would have a way to dispute that.
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It’s been awhile since I’ve updated my member story. I have a few people wanting to know about my progress so I thought this would be a good place to do it publicly.
As I gain tenure with this condition, I’m starting to see more patterns and am more readily able to characterize it. One of the only consistent things I’ve come to notice the way this affects my body is sleep. I would be curious to know if anyone else deals with this.
When I wake up after sleeping, but before I fully wake up(the kind of half asleep half awake phase) I can usually gain and keep a pretty hard erection for a very long time. Once I get out of bed and or mentally become alert, I feel like the oil has been left out of the tank. My dick shrivels up, my skin starts to feel dry, my joints and bones become weak and brittle, and my mental state goes from feeling young and virile to old and tired. This has been happening for well over a year now.
Morning erections of some sort are pretty common, but day time elections just do not happen unless there is sexual stimuli. As someone pointed out, nocturnal erections are a result of testosterone; and day time erections a result of dopamine. Not sure what can be done in my case. Ironically, the morning time, the only time of day my dick gets naturally hard, is when my orgasm Anhedonia is by far the worst. I wake up to have sex with my girlfriend first thing and there is nearly no feeling still, and if I manage to orgasm there is typically very little sensation.
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Have you tried Ritalin or anything else for dopamine if you think it could dopamine related?
Have you stopped Minox? I had similar symptoms for 3-4 months especially the shriveled dead numb penis and everything resolved 3 weeks after stopping Minox.
It’s interesting you find that you get erections in the ‘half-sleep / half-awake’ state. I get that too, it’s a very distinct pattern. Erections seem to occur if I haven’t had enough sleep, then drift into the state in the late afternoon. It isn’t accompanied by any libido or desire. It’s a very mechanical feeling. I zone out into half-sleep, the blood drains out of my head and into my genitals.
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@pete , I was the same in my 20’s. If I laid in bed in “twilight,” in the morning I could have a long-lasting morning wood, but as soon as I stood up or woke up completely, it would fade away fast. I would have a slight libido accompany it sometimes though, but sensitivity in the mornings was always lower, even pre-PAS.
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omg i took milk thistle and the same thing ahppened to me. HOW DO I GO BACK TO NORMAL I FEEL TERIRBLE.