Over 5 years off Finasterid - Finally found this forum

Member Stories
#1

Hi!

It would be a lie to say that I’m happy to be here, but at least I finally seem to have found people who understand what I’m going through. So let me share my story and then let’s get into (hopefully) fruitful discussions. I hope I can make my thoughts clear since English isn’t my mother tongue and some of my thoughts/feeling are even hard to explain my native language. Feel free to ask if some things remain unclear. Unfortunately, I started and quit Finasterid a long time ago. And there were many things happening over several years. I’m not entirely sure about the timeline of how my condition unfolded.

0) Where are you from (country)?

Germany

1) 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?)

I was researching the effect of foreskin restoration on libido to combat my sexual problems. Through google I accidently found a blog dealing with longterm side effects caused by propcia. That blog lead me here.

2) What is your current age, height, weight?

I’m 29, 192cm tall with a weight of approx. 88kg (sorry, I only know the metric system)

3) Do you excercise regularly? If so, what type of excercise?

I work out in the gym (no cardio, only weightlifting). I do this as regularly as my job allows which can differ alot. Ideally, I work out 3 times a week.

4) What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?

I try to avoid carbs, I try to eat a lot of proteins and even use a protein shake to support my exercising, but again, my job often makes it difficult to control what I eat.

5) Why did you take Finasteride (hair loss, BPH, other)?

Hairloss. Ironically, 8 years and lots of fallen out hair later I have no issue with my now beautifully shaven head.

6) For how long did you take Finasteride (weeks/months/years)?

I’m unsure. I started in 2004, but I’m not sure when I stopped. It’s been a long time ago. According to my mail account the last order of fincar was made in February 2007. After that my orders only consist of Minoxidil. I remember that I had a lot of Fincar left when i decided to quit. So my best guess is that I quit around March or April. I haven’t thought about that until I found that last order today, but I developed some still persistent symptoms right in that summer. Interesting.

7) How old were you, and WHEN (date) did you start Finasteride?

I was 22 an started around September 2004. I’m not entirely sure (see above).

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

See above.

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

Cold (not entirely sure)

10) What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?

Proscar, Fincar and possibly other generics.

11) What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?

1.25mg/day (I divided a 5 mg pill into 4 more or less equal pieces)

12) How long into your use of Finasteride did you notice the onset of side effects?

Unsure.

13) What side effects did you experience while on the drug that have yet to resolve since discontinuation?

Loss of pleasure during orgasm; unsure about others

Put an X beside all that apply:

Sexual
[x] Loss of Libido / Sex Drive
[x ] Erectile Dysfunction
[ ] Complete Impotence
[x ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[x ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

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

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[x ] Testicular Pain (rarely)
[ ] 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
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

14) What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

None, apart from starting to work out and trying to have a more active life.

15) If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)?

I don’t think so, but I can check with my old doctor if I can find him.

My story:

My story is a bit complicated. First, I started to take finasterid 8 years ago and I don’t remember exactly when I quit. It was probably sometime in early 2007. A lot of “events” happened in that time and I’m unsure of the exact timeline.

My first problem was a decrease in orgasm pleasure. It happened gradually and I’m not sure whether it started before or after Finasterid, to be honest. I was maturbating and watching porn alot during that time and attributed my decreasing pleasure to that. In 2006 I had a major depression for several weeks when I lead a poor life during summer. I was playing lots and lots of poker online for hours and hours, watched alot of porn, would stay up until 6/7 am every morning and sleep until 3pm all the time. And I would only leave the house for the odd party. It was pathetic. I then watched a tv episode that dealt with the ending of youth and young people becoming adults.I suddenly got overwhelmed by the thought that I would die some day and a feeling that nothing in life was making any sense. I actually thought dying immediately would be a good thing. Again, this might have been caused by Finatserid, but might as well not have been.

The depression ended when university started again in fall and I went back to lead a better life with more social interaction, but I was still fragile emotionally and avoided everything dealing with death and meaning of life. In February 2007 I placed my last order of Fincar. Now I’m totally unsure of the timeline. Several things happened. 1) I researched circumcision and its effect on sexual pleasure. Even before Finasterid it took ALOT of work to cum inside a girl. I found out that this was likely caused by my circumcision. That shocked me alot. I was also still suffering from disappointing orgasms. Then shortly after that - after I masturbated and had another disappointing orgasm - I suddenly had like a very hot flush going through my genitals. From then on my libido wasn’t the same again. 2) I started to wonder about my feelings. I would sit in the sun and wonder whether I was actually feeling it. Or I would hang out with friends and wonder whether I felt any fun. This is still the case. 3) I stopped taking Finasterid.

Unfortunately, I’m unsure of the order of events mentioned above. And if that wasn’t enough I had another depression later that summer which was similair to the first. That again ended when university picked up. I though my other problems were related to the depression, but those didn’t get better.

Not much has changed since then. I still lack pleasure in orgasm, lack libido and feel emotionally disconnected. This seems to fit the pattern of what most people here are suffering. But I cannot rule out that my problems might relate to depression (which itself might or might not be caused my fiansterid), circumcision (alot of circumcised males have weak orgasms and libido), my inability to pick up girls and subsequent attempt to make up for it with a lot of masturbation (which decreased with my libido) and porn consumption which, of course, might cause depression etc.

All this makes combatting my condition difficult and my story gives doctors the opportunity to blame all this on psychological issues.

Sorry for rambling, but I have never said or written a word about all this for about 5 years. I recently had a (short) relationship with an amazing girl and while that was over soon and motivated me to tackle my issues and to be able to lead a more pleasurable life.

I’ve read a lot on this form already and I will visit a lot of doctors.

There is so much more I have on my mind, but I think this is already long enough. Looking forward to remarks. :slight_smile:

Crashed again after 10+ years of PFS
#2

Wow very touching istory, you can bet it was fin!!! Im glad that you found a place like this forum to talk to others that are going thru the same issues. = )

#3

You have to remember that no one exhausts all the possibilities in life; so, it is effectively easy for anyone to question themselves or view themselves as deficient in some manner, if we are being hyperanalytical. Don’t let the doctor’s rhetoric and thinly veiled subversion attempts usurp what may be really going on with you. I bet that a lot of the doctors that you have spoken to were/are not chick magnets; I am adamant they also have personal problems which cause some degree of depression and anxiety. They work off of a simplistic binary biopsychosocial disease paradigm which can be easily undone, or put to use against them.

#4

Thanks for the kind words so far. To be honest, I feel quite bad, because reading the forum it seems like their is a very low chance of solving my issues. I read through the recovery section to get my mood up, but got even more frustrated since there is a lack of real recovery stories and many of the few recovery stories seemed to be caused by nothing in particular. I’ve lived with my condition for 5 years and with some problems for even longer, and I can live a somewhat normal life. I usually don’t suffer as long as I can keep my mind off my problems, but I was always under the assumption that I just needed to find the time to get some psychotherapy done and maybe take some anti-depression medication. Now it seems far more difficult and highly unlikely that I will get permanent improvements for my condition. I am a bit desillusioned now :frowning:

I have no time to visit a doctor now, but as soon as I can I will have my hormones checked. I bet they are messed up. Unfortunately, fine tuning the hormones doesn’t seem to help many people. But well, there is a low chance to get PFS, too. So maybe I get “lucky” again.

#5

I hope you’ll reconsider the anti-depression meds (ie, SSRI’s). They lower the androgen levels inside the cell which is exactly what Finastide does and is likely the main cause of our problems. So, you could very well be getting yourself into a much bigger mess in the long run. I wasn’t aware of that either when I got here. Certainly there is nothing at all wrong with going for talk therapy (who could blame you/us). Some interesting literature out there on Niacin (vit B-3) and it’s anti-depression effects. Could try that before throwing another pharmaceutical into the mix. Good idea getting your labs done. Have a full hormone panel done as well as 3 adiol G if you can.

On the upside- I cannot believe how far we’ve come in the last year in all areas. Things have really snowballed beyond what I ever could have imagined. Not saying we’ll have a treatment “soon” but we’re finally going in the right direction.

#6

Thanks for the advice. So far I stayed away from those due to their own significant range of side effects which afterall usually include loss of libido, too. The last thing I want to compromise is what little sexual function I have left.

Is the lowering of androgen levels inside the cell true for all SSRI’s? Is that the reason why SSRI’s can impair sexual function and pleasure? What about Tradozone which doesn’t seem to have adverse effects on sexuality, does it work differently?

Is there any relation between depression and PFS? The impact on sexuality and general pleasure seem to be similiar. Plus, depression can be a side effect of finasterid. Is there any connecting or is it just a coincidence?

That sounds good. Any advice on how to understand all this stuff better? I like to solve puzzles and I have a strong urge to find out as much as possible about any problems. I’ve started to read a lot, but there are only few pieces I’ve found here that a draw a bigger picture.

#7

Finasteride inhibits neurosteroids in the brain which are implicated in cognitive function, memory, depression, anxiety and possibly influencing sexual behaviours.

viewtopic.php?f=8&t=38

Also see the July 2011 news article on propeciahelp.com/
“JULY 2011 - JOURNAL EDITORIAL: “AN OLD PROBLEM WITH A NEW CAUSE - 5 ALPHA REDUCTASE INHBITORS AND PERSISTENT SEXUAL DYSFUNCTION””

#8

Thanks for the links Mew,

I’ve read a lot of your posts and you seem to have done a great job to advance the understanding of our condition. My appreciation. Unfortunately, I have no medical background at all (business degree) and a lot of stuff I read is way over my head for now. But I’m a curious guy who likes to understand stuff. You’ve probably gone through this dozens of times, I hope you don’t mind my questions.

From what I understand Finasterid inhibts the generation of neurosteroids and changes the neurosteroid balance in our brain which leads to depression and (related)symptomes like loss of libido etc. This seems obvious. When I first had a depression I researched that condition and consensus seems to be that depression is caused by an inbalance in brain chemistry. So that all fits together. The first thing that comes to mind is that our condition should be treated like a depression. But the use of antidepressants is strongly discouraged here, since they apparently lower the androgen levels inside the cell which apparently is what Fin did to us. Is that correct? Where is the connection between androgen levels inside the cell and neurosteroids? Or is the neurosteroids thing just related to (our) depression symptomes and not fundamental to our general post-fin condition? I read somewhere that neurosteroid levels can be tested. Has this been done here on a relevant scale and has that lead to any relevant discoveries? Are we suffering from a smallish level of neurosteroids (which could explain libido issues, ED, emotional blunting)?

I read throught the thread that deals with the ongoing study and experiments. That’s very interesting stuff and an impressive achievement just by itself. But I don’t see the connection to neurosteroids. Or has the neurosteroid idea been dropped and there just isn’t any link at all?

Is there any “Brain chemistry for dummies”? :wink:

A general question to all: What should I do? Hormon testing is encouraged here, but from what I read lots of people have done that already and hormon medication usually didn’t have any effect at all. Sometimes things even got worse. The theory forwarded by awor on why things could actually go worse under such medication sounds reasonable. Since my condition is unpleasant but far from being extreme (compared to many here) I’m sceptical towards anything that includes high medication with testo etc. With the preliminary findings of the study initiated by awor and others is there any reason to believe that hormon testing or medication is worth it at all? Or has that path been closed?

#9

I cannot belive I am back on PFS forums and writing this. This is fucked up. After over 10 years with manageable PFS I crashed again and now it’s far worse than ever.

Quick background. Took Finasterid from 2004 to 2007 to combat hairloss. Suffered two major depressions while on it in 2006 and 2007 as well as sexual side effects. Crashed after stopping in 2007. Had some sexual sides as well as some emotional blunting. Did not make the connection with PFS until 2012 when I discovered Propeciahelp, but then it all made sense.

For the last couple of years I have been doing reasonably well. Sexual function was not what it should be but it was functional. And while I was aware that my emotions were blunted, I was able to ignore that and live a reasonably happy life. I have a good job, hobbies and even found the love of my life. I barely thought about my PFS and ignored everything related, because while I was not perfect, I wasn’t suffering and life was going on. I donated to the Foundation in hope that one day I will my full set and intensity of emotions back, but this issue did not occupy me much. That all changed one month ago…

In April, my sexual side were starting to fluctuate more. I had recovered my erection in the last couple of years and, while I did not have sex often due to lowered libido, when I did have sex my erection was rock solid and lasting. In April that wasn’t the case anymore. My erection was weaker and would only last moments without direct stimulation. I also got some weird feelings down there every now and then. I did not think much of it and hoped that would resolve itself. It didn’t. One day I had sex with my girlfriend and the erection was barely solid enough to have sex. When later that day she wanted a second round I couldn’t get aroused at all. After she left, out of frustration I masturbated twice to check sexual function. That was a bad idea. The next day(s) I think I crashed again. I had hot flushes in my body and a weird feeling in my head. I started to check out PFS websites again which obviously was a bad idea, because now I am obsessing about this issue again after ignoring it for many years.

Things have progressively become worse since. My emotional blunting is worse, I have brainfog, I have no appetite, libido is all but gone (ironically the weird feeling down there disappeared). I have this inner restlessness/stress/panic. I am constantly on the edge. I barely sleep. In the last couple of days I have slept an average of five hours at best. I can fall a sleep quickly, although I have to force myself to lay down (not feeling tired although I should be), but I wake up early with racing thoughts, my heart pounding and feeling sick to my stomach like I am in panic (and maybe I just am). I had that occaisonally before my recent crash, but it was rare and I would get better quickly, often after getting up and starting the day. Now that happens almost every day. Ironically, though, sometimes I get a little tired during the day and after a nap I typically feel less bad, while waking up in the morning is absolutely horrible. Not sure how that works…

I never told anyone about my condition, but I had to tell my girlfriend. She has been amazing, but it is hard for her to know that I am suffering which in turn makes it hard for me, too. I don’t want to drag here down that rabbit hole.

I am in dispair. I don’t know what to do. It’s hard to live like that when you wake up physically sick every morning. I don’t know how long I can take that. I am functional at work, but it is a struggle. However, while rationally it makes sense, I have no longing for suicide (yet) either and couldn’t do that to my parents and girlfriend. I never tried any protocols, because their track record is bad. I know there are no treatments. Sometimes I wish I could just pop an antidepressant and feel better, but I know that is not possible and that they are trouble, too. I have faith in the foundation and the studies, but treatment options seem to be far away. I cannot live like this, I cannot die. I need help but cannot get it. I can’t even cry, although I would like, too, but I am too numbed. This is fucked up. My only hope is that this is a temporary crash and that I will return to my previous PFS baseline. But it has been a month already. I don‘t even know if my depression/anxiety/obsession issues are a new PFS symptoms or just me confronting the condition again that I ignored for so long…

I am not sure, where I am going with this, I know that none of you can really help, but I guess I had to write it down. I so wish I could go back to my oldself, even my old PFS self…

#10

I’m sorry to hear, and it’s important to share what we go through, miracle cure or not. I too had ongoing (just digestive) problems from a few pills six years previously I never attributed, and gave myself extreme PFS in all categories taking another in ignorance last year, so I know what it’s like to f up, as you say…

If you feel you’re worsened by reading I’d try to bear in mind that it’s clear PFS is not heterogenous and try and focus on self care. I’m glad to hear you have the support of a caring partner and are able to work - that’s a real blessing, even though it might not feel like it considering how difficult it is for others to understand and the pressure it puts on those around us.

I would not push yourself sexually in this state due to the anecdotal (and apparently previous for you) crashing from doing so. I know that’s depressing, but hopefully it wont be forever. Hang in there.

#11

This shit is scary that you can recover somewhat only to crash randomly down the line.

1 Like
#12

Masturbation/orgasms, are a killer for some reason… best to have them very sparingly

Yea, crashes can be triggered very randomly. T replacement was also a back breaker for me… started off being awesome, a month later was the biggest crash of my life.

The only thing giving me a glimmer of hope is mineral balancing and short cycles of progesterone / 5adhp and r andro… estrogen sides / libido are improving… still long way to go but not rock bottom

#13

I personally wouldn’t expect it is entirely random. As you can see on the main site, androgen receptor overexpression occurs in pfs patients and animals’ brains with exposure and withdrawal of fin. Prolactin spikes after sexual activity and increases AR expression, so it’s logical that if this is part of the problem then it would make it worse.

#14

Thanks guys for taking the time to read all that and comment. I am on a strict no fap policy since my crash (which isn’t hard given my current situation…). I am not sure yet whether exercise (running, lifting weights) is helping or not. It keeps the racing thoughts at bay, but I am afraid of reports related to exercise intolerance that I found here. That wasn’t an issue before, I loved to work out. I am keeping a log to see how I feel after exercise.

#15

Yea, no fap helps after the libido comes back some…

Exercise can crash you or help, depends on how exhausted you are, you can still have energy but adrenals are in overdrive… I would go very easy, and look for signs, like stubborn fat

#16

Man, I’m sorry for you.
But…didn’t you consider to make a blood tests just after crash to see your levels? It would be very interesting, taking into account that nobody knows why the crash happens, and it is very difficult to find one patient to be analyzed in that specifi moment.

#17

Sorry, did not consider any blood test. And to be honest, I don’t think a simple blood test would reveal much.

#18

I have to vent some more. It’s a real struggle.

In the last couple of days the extreme anxiety in the morning has subsided a bit, but sleep is still messed up. I know when I am tired as I start to yawn a lot, but I rarely ever feel tired. I have to force myself to sleep. And after just a few hours I awake again, neither refreshed nor tired. It’s not even neutral, more like irrated. From then on I simply nap in 15 minute intervals just to awake again. And I only do it, because rationally I know I should get more “rest”. I don’t want to sleep, I don’t want to stay in bed, I don’t want to get up either. I don’t want anything. It’s messed up. Does anyone else feel like this?

But it’s not only sleep, everything is blunted. Before my recent crash, my emotions were already blunted, especially feelings of relaxation/release/relief (hot tea in Winter, waking up refreshed, just staying in bet on a cold and dark Sunday and relaxing, crying when you feel bad). But at least I had motivition (for my career, for sports, for sex). It’s all gone. I don’t want to do anything. My girlfried wants to make all those plans for the weekend and I just comply, because I have no motivition either way. It’s awful. I really have to force myself to get ready. She is wonderful, she doesn’t deserve any of this. I also have to force myself to get to work. It’s these last staples of mylife that keep me going. If I don’t, everything falls apart. On Thursday I had the day off and stayed in bed all day, because nothing motivates me. Not even sports, and before the crash I was working out 4-5 times a week. Does anyone feel like this, too? How do you keep going? Also, I barely eat which makes things worse, but I have no appetite.

I have searched the internet for medications and supplements. I know there is no treatment for PFS, but I thought I may find something to mask the worst symptoms, but the search wasn’t very successful, especially when accounting for long-term efficacy. I may open another thread to discuss some in the next days.

I even looked up stuff like Phenibut thinking it may at least give one good day every week (needs to be cycled). And I am not the type of guy to do drugs. I probably won’t now either, but I guess I need some “options” in my mind as a crutch. Every day is a struggle. And I am not that old yet, I have a lot of days in front of me… I hope I can return to my previous PFS-state which already sucked, but I made my peace with it. I am not sure how I am supposed to deal with my current state for next decades. It’s shit.

1 Like
#19

But…what did you do to crash again after 10 years? Did you drink a lot? Did you stop making sports? Too much stress??

#20

I still feel like this some days, but what helped the most was time. Initially, I was going nuts because of the anhedonia and complete lack of emotion so I’d take Gabapentin occasionally, which is a VDCC just like Phenibut, it definitely helped. Tolerance is a bit of an issue with this one, but it’s something I could take every couple of days and it brought back some sociability, some comforts, even to improve my sleep, so maybe it’s worth a shot. Ideally you’d get Pregabalin but that’s more difficult to get prescribed because of the abuse potential.