1 year since quitting after 13 months of use with bad side effects

Member Stories
#1

Hi everyone,

I’m a 28 year old guy living in LA and recently found out about this website which made me realized how all the symptoms I’ve been experiencing are likely to be permanent.

I started using propecia for 3 months and then switched to proscar where I cut the tablet into for pieces and took it over the course of 5 days. Before taking propecia I had a very high libido. I even had frequent embarrassing moments due to my spontaneous erections at work or in public which I was able to hide most of the time by holding a jacket in front of me or just by remaining seated on my chair waiting patiently for it to go away. Sadly, propecia took care of that problem for good.

After the 2nd or 3rd week of staring the drug, I started thinking about sex much less but during that time i had a very busy work/study schedule and was telling myself “well it can’t be that bad not thinking about sex all the time, I can focus on my career more now”, after all the side effects were supposed to be temporary or they were supposed to disappear after continued use.

I had some failed intercourse attempts but i thought it would be due to high alcohol intake or i was just not getting enough arousal. I also started waking up in the middle of the night to pee almost every night which did not happen to me before but i thought it was from stress related to work. I stopped taking the medicine when I just couldn’t get it up one time when i was trying to masturbate.

Now, one year after quitting, I think there is no improvement in my symptoms. I don’t have morning erections anymore. I noticed I get a somewhat soft erection during sleep up but it goes away within 2-5 seconds after waking up. If I really focus or with constant contact stimulation I can get an erection but I lose it within 5 seconds when I stop, which makes it impossible to have a proper intercourse. I feel like things could be getting even worse within the last couple of weeks but it could also be psychological as only recently I realized that my ED could be/is permanent. I started getting anxiety every time I look down there.

I think I will try to focus on the “full recovery stories” section of this forum for the rest of the night in order to maintain my mental health. I still have some hope that things will get better.

  1. Where are you from (country)? Los Angeles, CA

  2. 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?) Google search on propecia side effects

  3. What is your current age, height, weight? 28 years old, 5’9" and 152 lbs

  4. Do you excercise regularly? If so, what type of excercise? 2-3 times a week. 30 mins of cardio followed by strength training for a total of 60-90 mins

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? trying to eat healthy as much as i could since last year. mostly food rich in proteins, green vegetables, nuts and fruits. I tend to cheat frequently tho with pizza , ice cream and burgers…etc.

  6. Why did you take Finasteride (hair loss, BPH, other)? I took finasteride for hair loss prescribed by a … dermatologist. And yes she forgot to mention any of the side effects I’m experiencing now

  7. For how long did you take Finasteride (weeks/months/years)? 13 months

  8. How old were you, and WHEN (date) did you start Finasteride? 26 years old (started in september 2009)

  9. How old were you when you quit, and WHEN (date) did you quit? 27 years old, i cant exactly remember the date but it was either early or late october 2010 when i stopped

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

  11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic? started with propecia then switched to proscar but kept the dose around 1mg finasteride

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1-1.25mg/day

  13. How long into your use of Finasteride did you notice the onset of side effects? gradual loss of libido started after the 3rd week of use. Difficulty in erections started after 6 months mark.

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation? I don’t have to go to the bathroom in the middle of the night anymore. Other than that my libido is fluctuating. For instance last spring which was around 6 months after quitting, I experienced improvement in libido but it has gone worse again. Of course the increasing number of my failed intercourse attempts (which is every one of them within last 9 months) and the embarrassment that comes with them is definitely not helping with the libido situation.

Put an X beside all that apply:

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

Mental
[X] Emotional Blunting / Emotionally Flat
[XX] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[X] 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
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[XX] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[X] 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
[X] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Going to see a local urologist in 2 days and will be asking for a detailed hormone test. I also contacted Dr. Goldstein today, so planning to see him soon.

  2. 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)? Will be posting those as soon as i get the results

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride? I wish I had never touched that poison.

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.

#2

get all the labs blood and try to do a rhenis urine profile too.

Do a siliva 4x cortisol + dhea.

Measure your temp a few times thought the day. And post your results.

Do not skimp on testing. It could help you improve some of your symptoms.

#3

Thanks Vincentv,

As a first step I went to a local urologist today covered by my insurance. Physically everything looks generally normal. He listened and seemed to believe in me although they are not familiar with PFS. The doctor wanted to test the testosterone levels only but I was able to persuade him into doing the minimum recommended blood hormone tests as listed on this forum (all 12 of them). I’ll post the results next week with body temperature readings.

I checked some websites to see if it is possible for me to order the urine test myself but my understanding is that it’s not legal for them to do it for residents of CA or NY without a physicians written consent. Is there any way around this? I will try to convince him to do the urine test next week. Till then I’ll just be waiting on the initial results and keep myself occupied with the viagra samples :).

#4

What is interesting is that you experienced loss of libido after a couple of weeks.

Would you assume that loss of libido should occur within 2 days or so of starting the drug if loss of libido was primary due to lack of DHT?

If it was due to lack of dht - wouldn;t your libido start going down from day one? Did you notice any change in the first few weeks? I did not loose my libido straight away too. It took atleast a couple of weeks.

#5

The more I read about the hormone feedback loops and conversion mechanisms to more confused I get. I wish it was more straightforward which would make things way easier.

I remember reading somewhere that when you start the Fin treatment since testerone is not converted to DHT you end up with excess testosterone at first, and I also remember even being a litlle hornier the first couple days, maybe this was due to temporarily higher testosterone levels. Also in hairloss forums don’t they usually mention accumulation of DHT in your scalp and skin causing hairloss? In that case maybe DHT is vapable of being stored in your target tissues (i.e. skin, scalp, penis, prostate,…etc) and maybe it takes days for these tissues to run out of DHT, hence it takes a while for the loss of libido to occur? Not really sure.

Another thing i remember is during the time when i was using propecia, after around 2-3 months I went on a week long trip and forgot to take the pillls with me. After I was off the pillls for 3-4 days i started experiencing the uncomfortable feeling in my testicles (which was very similar to what happened when i first started using the pill which had disappeared after a week of use), this was also followed by a loss of libido i think. Anyways when i came back from the trip and restarted taking the pills it went away. But all this was before the gradual side effects of Fin became significant.

#6

this could be an argument for restating procepia. i have been tempted for a long time. a few members have and claimed improvements. admitidly u will still have sides but i think most peoples sides are worse sinse stopping fin than on it

#7

You will piss off a lot people by saying that but you have a point, the symptoms were non existent while on propecia atleast for me.

#8

I was curious about this for a while too but my also my sides happened gradually which is the reason why I quit it at the first place. At this point, even if it is possible to get some imporvement by getting back on Fin, I would never consider it. I even feel similar about taking other pills like Clomid or Arimidex as they are not approved to be used to treat PFS or even to be used by men. But everyone is free to do what they believe is going to help them.

On a seperate note my impression from the recovery stories is that it’s the ones who go with the healthier living lifestyle are the ones who achieve permanent recovery so I decided to go with that approach first. I have been taking herbal supplements for the last two weeks (Resveratrol, ZMA, vitamins, ginseng, maca, horny goat weed) and started wieght lifting again which seem to be working. I get two-three days of the week when I feel significantly better with 70% improvement and more responding to stimuli. Even if the improvement is fluctuating, its still better than nothing.

#9

Yeah I totally agree, a healthy lifestyle is the only way to go

#10

A few members? not really. There was that guy that was impotent for 5 years and then re started finasteride and got better and never came back and then there is me who is still reaping some benefits from using avodart but i do not think it is the answer. I have had some amazing moments since using it but i have had them without also.

Claro/ the french guy on here claims that a couple of french sufferers use saw palmetto and get benefits and so does spstriken.

The people who reacted negatively to me and others going back on 5 ar inhibitors are complete and utter idiots that must want us all to carry on suffering. In my opinion, going back on finasteride/ 5 ar inhibitors had to be done by somebody. I thought it was pretty obvious given that this whole problem starts when you quit the drug?

Annon, you have been suffering for years with not a single day of recovery, why don’t you just try something? you have nothing to lose

#11

what am I taking Sawpalmetto to feel better? where did I write this. The Saw palmetto has destroyed me worse than you guys. I never used propecia.

#12

Hi all,

It’s been a while since the last time I came to this website and for a good reason! Once again I just remembered about all the depression I went through this time last year and maybe my current post can give some of you some hope. So since my last post, most of my symptoms have improved drastically. I don’t have erectile dysfunction anymore. I wake up with morning erections many days of the week and sometimes they last even longer. I also have been having a healthy sex life and at first I was still stressed out about losing my erection but now I am confident again (in fact I was stupid to sleep around with all the stress and all, now I am dealing with a not so serious but stubborn STD, still it’s not even nearly as depressing…). I keep getting strong erections here and there; I also get them when I think of my partners, so the brain-penis connection is all good.

On the down side my hair loss rate has increased again, I’m going towards complete baldness, I am using rogaine foam only but I think I passed the borderline on that, well I guess it is another sign of my hormonal recovery.

Again last year I had some minor damage on my penile tissue, I didn’t suffer from shrinkage but when flaccid my penis looked like there was a rubber band in the middle of the shaft. That condition has disappeared 90% and the tissue in general feels warm, soft and healthy again. This wasn’t the case a year ago, it used to feel semi-hard even when flaccid, and it just didn’t look healthy. One persisting side effect I have is the watery semen. I still have watery semen and also the amount is greater compared to what I used to have before using propecia. However I’m trying not the worry about this too much, maybe it can get better with enough time.

In terms of what I did, I decided to follow the healthy life style path with herbal supplements. Didn’t want to mess with my hormones anymore. I used DIM for three months, went to the gym for 5 times a week mostly weight training with some cardio, had protein shakes and a protein rich diet, maca, vitamin complex, horny goat weed, tribulus with arginine, some other stuff that I don’t even remember now but I can look them up…, lots of broccoli and green tea, zinc and vitamin D supplements. I used the herbal pills in rotation for about 6-8 months. I haven’t been taking any of these supplements for the last 6 months except the daily vitamin pills. I saw a gradual improvement in my condition, it was very slow. In terms of the effects of supplements, I think tribulus with arginine made the most significant change, and during my use of DIM and tribulus I used to get some pain in my prostate sometimes, especially if I had alcohol the night before. Since I stopped taking any supplements I never got any prostate pain, however I guess they were stimulating the glands including prostate, overall it worked so it was worth it.

I guess the fact that I was only 28 years old when all the symptoms started helped with the recovery. In the meantime, I went through a lot of emotional distress because of this. I ended my 5 year relationship, quit my job then found a new one and moved to a different city. However in the end everything seems much better now.

Long story short, there is always hope. And all this experience also made me a believer of holistic medicine. Now whenever I have an issue, I try to get herbal supplements first and definitely think twice before listening to any medical doctor, especially with the prescriptions. The dermatologist who had prescribed me propecia did so after spending five minutes with me and she didn’t mention a single side effect, not even the possible “temporary” ones which is completely irresponsible. Oh I forgot to mention, the urologist who I went to see after the side effects occurred, also ordered tons of unnecessary test so that he could charge my insurance (I have good insurance coverage). I even let him do cystoscopy later I found out it was completely unnecessary and he charged the insurance thousands of dollars for this.

Good luck to you all

1 Like
#13

Congrats, and thanks for updating us on your recovery.

#14

Congratulations! I’m happy for you.
Could you please tell us how much time has passed since you felt healed? I ask because in the case it has been more than six months it wouldn’t be bad if this thread got moved to the recovery section. thank you!

#15

Also, could you tell us how long into your routine you started to see significant results? And was your libido and whatnot at a total zero beforehand? Also, where would you put your recovery now, like in % for your different symptoms? Thanks!

#16

Cap,
Here is a long answer for you, I came across your story and the first message you sent looked very similar to mine, not everything is the same of course but in general it sounds similar besides the mental side effects, I don’t think I had brain fog, but then I’ve always been a forgetful person and had some concentration issues since childhood so I am not sure if it made it any worse or not. ( saying that I still function very well, have a masters degree in engineering, so I’m not that bad with brain functions)

Tab,
I didn’t see your story on the website but looks like we are the same age and I hope you get better soon as well.

I never saw a significant quick result, as in I never saw a drastic change in a short period of time. The improvement came very slowly with time and that’s why most of the time I wasn’t even sure if things were really improving. Especially because my condition was fluctuating, as in one day everything was much better, mostly during the weekends after a long period of sleep, I was waking up with a good erection and then for the rest of the week, there was nothing. I thought once I quit taking the herbal supplements, then I would lose the erections but to my surprise this didn’t happen.
So my libido was very low during and after the use of propecia, and then I had two unsuccessful attempts trying to have sex and just couldn’t keep my erection long enough to put a condom on no matter how much I tried. After this, I found out about the permanent side effects and that’s when my libido completely tanked. I think there is nothing worse for your libido then knowing that your equipment doesn’t work and may never work again. Other than the penis was also very insensitive as if I had a thick condom on it or a sock on it so I had to apply more pressure to feel anything. My penis remained semi hard even when flaccid, it was just not shrinking as much as it used to shrink, I am guessing this is a sign of penile tissue deformation and I guess this happened cause it had a trauma or something from reduced blood flow during sleep for many months. I guess it needs to fill with blood during sleep to stay healthy and functioning.

I started taking supplements around January 2012, I think, and I started getting some improvement in two months but it was very negligible. The first time when I got really hopeful was in June, when I went on a vacation for a week and forgot to take any pills with me. So I didn’t take anything for a week and I was actually doing quite well. I’m sure getting lots of rest in a very stress free environment helped a lot, so then I returned home but I think I stopped taking regular pills around june or july. At first I was just taking a break cause I was having prostate ache from time to time and wanted to take a break from the herbal stimulants. However, I kept a bottle of horny goat weed with me and usually took some on Fridays and Saturdays ( well before going out, just in case you know) and I believe the more blood flow you get to your penile tissue, the better it recovers. I am not talking about masturbating frequently though. I was planning to start my next cycle of supplements maybe after two weeks somehow I just took my time and after the vacation, all the gradual improvement remained and I think I kept recovering very slowly. So I guess overall it took me 6-8 months to feel like I had a big improvement, however I didn’t start this regimen immediately after stopping propecia, I took my time cause for a long time I wasn’t sure what was happening to me and why it was happening. So if you add that time I would say sometime between a year and a year and a half.

Anyways, however I still masturbated once a week, forcing myself even if I didn’t feel like doing it, with a lot of effort trying to keep it up with lots of contact stimulation which was the only thing working. I started taking this herbal supplement complex which had a couple of stuff in it but mainly it was ginseng, maca, horny goat weed and something bean,…etc. The doctor I went to see was actually selling them for older guys to get their libido back. Anyways i ended up buying a two months supply although they were overpriced compared to what you can buy online. I took these for two months and they were sort of helping, mostly on the libido side, also going to the gym helped a lot, my blood tests showed low vitamin D levels so I started taking high doses of vitamin D as well as resveratrol.

In terms of recovery steps my libido came back first, with still a malfunctioning penis then I got some Viagra and was experimenting with it and Viagra worked well for me to keep an erection however it was very difficult to achieve orgasm on Viagra. So I used it 4-5 times overall. I stuck to horny goat weed instead which of course doesn’t have the same strong effect but I guess it still helps. I saw some more improvement when on tribulus and that’s when also the prostate pain was a little more frequent, not that bad though once or twice a week unless I got drunk, so it was definitely doing something. I think around April-May my penis started shrinking to its normal size when flaccid and it was completely soft again, I took this is as the first tangible sign of recovery. The weird bump and the weird rubber band look also started disappearing.

In terms of my curent overall recovery rate I am gonna say 85-90%. One big reason why I wouldn’t call myself fully recovered is the watery semen. My ejaculate amount is much more than it used to be before I started using propecia but it is very watery. The texture improved a bit, it became a little bit more jelly like then when I was on propceia but still it is not normal. Also when I saw the urologist they said my prostate also didn’t look very healthy but it wasn’t anything alarming so maybe it is still not in good shape and maybe my sperm quality is really bad but I don’t care about those as much at the moment. Once I get better (referring to my new health condition that is independent from propecia side effects), I’ll probably get more test done on my hormone levels and other things and that’s when I’ll know if I had recovered or not.

The other thing is that, well, my erections are still not as strong as they used to be compared to 5 years ago, when I could keep it up for a very long time and in the mornings sometimes I would have to wait in the toilet for a couple minutes for my morning erection to come down, before I could actually pee. I don’t have the same experiences anymore, but, it works when I need it to work and I’ll just take that. Also I talked to some of my healthy friends within the same age group and they say the same thing that it is natural things are gonna calm down when you approach your 30s so I guess expecting to be the same as when I was 20-25 is not realistic.

Overall, I would highly recommend for you to focus more on the recovery stories on this website, which is what I did. Don’t focus on too much on the very scary possible side effects if you don’t have those. For a while I was constantly watching my penis worrying like crazy that it would shrink or get more deformed and this wasn’t helping. After a while I decided to spend less time reading the bad stories and focused on the positive ones and once I got all the information I needed for a recovery plan I tried not to spend too much time here. This forum is great for spreading knowledge,…etc but don’t spend too much time focusing on your bad condition. I always kept telling myself that I was going to recover… So stay optimistic, and looks like many people get some sort of improvement with time.

#17

Congratulations on the improvement in your condition. Have you noticed any change in genital numbness/sensitivity decrease? I read someone describe that pinching their penis was like pinching the skin on their elbow. That’s the case with me also. I have seen some fluctuation in libido, and brain->penis connection. However I have never felt any fluctuation in sensitivity.

#18

Congratulations :smiley: I really hope it will be the same for me

#19

Thank you for coming back and filling us in.