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)? United States
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?) searching PFS on Google
What is your current age, height, weight? 32, 5’9”, 145 lbs
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Finasteride
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1mg/day
What condition was being treated with the drug? Hair loss
For how long did you take the drug (weeks/months/years)? 3 weeks
Date when you started the drug? 6 feb 2020
Date when you quit the drug? 28 feb 2020
Age when you quit? 28
How did you quit (cold turkey or taper off)? Cold turkey
How long into your usage did you notice the onset of side effects? Approximately two weeks
What side effects did you experience that have yet to resolve since discontinuation? Mainly sexual side effects
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
[x] Erectile Dysfunction
[ ] Complete Impotence
[ X] Loss of Morning Erections
[ X] Loss of Spontaneous Erections
[x ] Loss of Nocturnal Erections
[x ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[ ] Emotional Blunting / Emotionally Flat
[x ] Difficulty Focusing / Concentrating
[ ] Confusion
[x ] Memory Loss / Forgetfulness
[x ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x ] Lack of Motivation / Feeling Passive / Complacency
[ x] 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
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ X] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes
Misc
[ ] Prostate pain
[x ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[x ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature
[ X] Other (please explain)
Severe insomnia
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Tried a regimen from Dr Mark Gordon for a few months in 2020- this was ineffective and exacerbated a few symptoms (especially gynecomastia). Had success in 2021 treating insomnia with a combination of very strict “sleep hygiene” habits along with medication.
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?
Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
Hi all:
I took finasteride for about 3 weeks in early 2020, and developed PFS as a result. I noticed a few effects when I was actually on the medication, namely sexual issues (erectile dysfunction, reduced libido, etc) and decided to discontinue it. About a week or so later, the familiar “crash” happened, and I developed much more severe sexual sides along with crippling brain fog, insomnia, and other cognitive issues.
At the time I decided to try finasteride, I was already in a pretty rough spot in my life with regards to my mental health. I suffer from OCD, and as the disorder tends to do, it latched on to a bit of hair thinning in a way that was very extreme. I became totally consumed by worry about my hair and hair loss, spending hours taking pictures of my head and googling hair loss information in an attempt to gauge just what I was in store for and how I could fix it. Losing my hair seemed, at the time, like the worst possible thing in the world- I was convinced that it would ruin my life. And, like many of you, I then became desperate for a solution. It’s worth noting, ironically, that now, 5 years later, I still have a full head of hair. It’s thinned a bit, and maybe the finasteride made some permanent alterations that’s made that slow down to some extent, but overall I think about my hair very little now. I’m happy to still have it, and am ok with the fact that it will continue to slowly fade away. But at the time, this not only seemed far more imminent, but also incredibly urgent. So, like many of you, I sought out a dermatologist, and started taking finasteride.
In my months of frantic research, I’d of course heard about PFS as well. And I was extremely afraid of it, so much so that I debated for a long time whether the risk was worth it. But of course, there’s so much contradictory information out there, and I was reassured from so many sources that PFS (if it even existed at all) was exceedingly exceedingly rare. And so, putting my anxieties aside, I thought the peace of mind of saving my hair would be worth the risk. As you all know, it of course was not- it was a massive mistake, one that I regret terribly.
I won’t bore you with the probably all-too-familiar ways that the next couple years of my life played out. Suffice to say, it was the darkest period I’ve ever experienced. I found myself unable to work, unable to drive, crippled with constant cognitive fog, unable to sleep more than twenty minutes at a time, and spiraling into a black hole of despair. I went on the carousel of doctors, pleading for help, only to be told repeatedly that my concerns were merely extensions of my mental health and that there was no physical cause for my symptoms. EEGs, blood work, MRIs, etc- nothing conclusive. I exhausted myself and my loved ones by becoming so completely consumed by PFS that it was all I could talk about. I was desperate to be understood and helped, and it felt like no one really believed me. In one of the darkest moments, I lodged a belt in a doorframe in my apartment, scrawled a hasty goodbye note on an index card, and prepared to make an end of things. The belt broke, and spared me my own hasty decision that time.
Now, I came back to this forum because I wanted to offer an update on where I am now in comparison to that place. I want to offer you all some hope, in a way that is realistic based on my own particular experience.
I’ll start off by saying that I am not miraculously all cured. Nor do I have any one particular treatment or cure that has made things better for me. I can only offer what I think has helped me, and what I think hasn’t- but these really are only my subjective opinions, and shouldn’t be taken as advice.
I would never have believed it 5 years ago, but today I am doing pretty well. I am able to work normally, have a regular social life, and have had several relationships during the time I’ve had PFS. Many of the most debilitating symptoms- cognitive issues, brain fog, anxiety- have largely subsided, or at the very least are not noticeable most days. I do still have trouble with sleep sometimes. And sexually I am still not back to normal. My libido has come back to some extent, but I still have ED. I usually need medication in order to have sex, and even this can be a bit tricky/awkward. But I’ve found that being direct about this with my partners over the years has (luckily) always gone ok, and ive been able to find a good combination of ways to be intimate even with the lingering PFS symptoms.
Getting to this point of being mostly healed has been slow and non-linear. There have been very few specific points I can identify where things seemed “better” all at once. The cognitive symptoms faded very slowly and I also adjusted to them so that it was hard to tell when they finally subsided. The sexual symptoms fluctuate- sometimes they’re so bad that it’s like I’m back at the beginning, other times they’re very manageable and I feel much closer to normal. I’ve had to slowly accept that some things may never go back to normal, and this hasn’t been easy- there are days when I still don’t.
I’ll tell you the main two things that seemed to make the biggest difference for me, and again this is highly personal:
The first thing:
In 2022, I made a New Year’s resolution to take a walk every single day, no matter what. Even if it was just to the end of the driveway and back, I committed to doing it every single day. I’m proud to have stuck to that resolution every single day since then. And sure enough, those short walks got longer over time. I lost some weight. By the spring of 2022, I even started adding in some running in place of my daily walk. And in the fall of that year, I bought a cheap bike and added cycling to the mix as well. The changes were slow but clear- I found myself with a bit more energy, a more stable mood, and most importantly I had something that I enjoyed doing every day that gave me a sense of control and accomplishment. It was not a magic cure for PFS, but at times I have noticed that exercise helps to take the edge off many of my symptoms. Other times the symptoms got in the way, and early on, those were the days when I had to drag myself out just for a walk to the end of the driveway and back. Those days were hard, but I always made sure I checked that box for myself. My doctors and even many of my loved ones, I had realized, could not fix me, and I had no control over that. My little daily exercise routine was something I could control, and so I latched onto it. Today, three years after I first started hobbling to the end of the driveway and back, I am in better shape than I’ve ever been, even with the challenges of PFS.
Last summer, after going through a difficult breakup (unrelated to PFS), I even took this habit to the extreme: I saved up some money and trained hard, and then I rode my bike from Seattle Washington to Boston Massachusetts. It took me 79 days, and I saw the entire country under my own power. I crossed massive mountain ranges, survived severe thunderstorms and heatwaves, endured biting insects and headwinds and saddle sores, and embraced the fact that I couldn’t control so many things- other than my ability to just keep on pedaling. It was a once in a lifetime sort of experience, and in large part I think I couldn’t have done it had I never gotten PFS. Going through something as dark, and absurd, and frighteningly uncontrollable as PFS shook me to my core. It tore me apart and humiliated me and took away my life for several years. This big long bike trip was my way of saying “fuck you” and taking it back a little bit. I’m not saying everyone needs to get on a bike and pedal off on a grand adventure to cure your PFS. I don’t think that’s even doable for people who are in the more acute stages of suffering it can produce. But I just wanted to include this part of my experience because if you had told me in 2020, when I was wedging a belt in my bathroom door and getting ready to end my suffering, that I would ride my fucking bicycle 5,000 miles, I wouldn’t have believed you. But I did. And I think many of you can get to a similar place as well.
The second thing:
The second thing that helped me was a bit more subtle, and I want to be careful how I phrase it. So I’ll state categorically that PFS is a real, under-studied, tragic, and horribly unfair condition that afflicts so many men around the world. It deserves far more attention and research than it currently gets, and us sufferers are left in the torturous position not only of enduring the physical impacts of the drug, but the humiliation of then being disbelieved and ignored by those that we would trust to help us. It’s a completely maddening experience. I truly think it drove me insane for a couple years, and I think there’s some residual trauma associated with that experience, as I’m sure many of you can relate to.
When you feel that way, at least for me, it became easy to obsess over my condition. How could I do anything else? I was unable to engage in so many other aspects of life, plus I got sick with PFS right as the covid pandemic was starting, leaving me even more isolated. And so I did obsess and remain solely focused on my condition for about two years. I went to every doctor I could find, tried all sorts of treatments, begged for help from anyone who would listen. But by the end of 2021, I hit a breaking point. I realized, slowly, that the help I so desperately wanted wasn’t coming, at least not right away. I had done my best to advocate for myself and to stand up for my suffering, but I also came to realize that I had lost myself in the process. And so mainly out of sheer exhaustion, I did find myself slowly starting to focus less and less on my condition. This became easier as some of my symptoms eased up, of course, but it was also a mental change that I underwent. I don’t know how to do it on purpose, maybe it really was just time that did it. But over time I really did find that I thought less and less about PFS, and tried to focus on the things I my life I could control and make better for myself. My exercise routine was a big one of course, but I also tried to rebuild some of my friendships, read more, etc. I always left room to deal with my PFS and to grieve what it took from me, but I also began to take time away from it and try my best to cherish what I still had. That meant no longer visiting this forum, no longer googling PFS, no longer arguing with people about it on Reddit, no longer ruminating about it out loud to my friends and family.
This isn’t advice. I know that it is not easy, or necessarily appropriate, to tell anyone suffering from this disease to “just ignore it”. That’s what people told me to do and it just made me feel more alienated and alone. But I did find that over a long time, slowly learning how to take some mental space back from PFS and let go of some of the obsessive patterns it tended to produce in me was a big part of being able to live my life again.
Now, here’s what didn’t work for me:
-Mark Gordon’s stuff. It was expensive and sounded good, but it didn’t work.
-any supplement I took, and I took more than I can count. The only thing that helped at any point was magnesium, which seemed to make sleep a little easier
-any medication. Other than some sleeping medication that did help my insomnia, I didn’t have any benefits for PFS from any medications I was perceived during the last five years.
-avoiding or restricting anything with my diet. I tried avoiding high 5ARI foods and stuff for a while, no results there
I include that stuff just in case it’s helpful, and I don’t intend to discourage anyone that is looking to try any sort of remedy that may be beneficial. PFS seems to be highly individual, and what worked/didn’t work for me is not necessarily applicable to another patient.
Mainly I just wanted to come back and offer a bit of realistic hope for any of you suffering. My life may not be back to how it was before I took finasteride, but it is livable and I have been able to find meaning and joy in it again. I’ve managed to accomplish things and reshape my body in ways that I don’t think I would ever had the motivation for without going through the worst of PFS. I wish I could guarantee this sort of healing for all of you, but I can’t. All I can tell you is that it is at least possible.
I hope everyone reading this is able to take a little comfort from that. Please know you’re not alone and that things can get better. All of us are so much stronger than anyone realizes. Every single one of you is in my thoughts. Stay strong. If I can ride my bike across the whole damn continent a couple years after i could barely get out of bed with PFS, I believe that better things are possible for all of us.
