HI, I felt it important to get my story out there. Although I am not fully recovered, I feel I can offer people some hope.
I went on Propecia in 1998 when i was 22. I took it fairly consistently for the next 12 years, with only two major breaks–once, when i switched to dutasteride for about a year (around 2004-2005) and once when i went off both drugs completely for about a year (around 2005-2006). I went on and off the propecia a handful of times for shorter periods, but for the most part was pretty consistent and regular in taking it.
I definitely noticed that while on the propecia, my sex drive was mildly diminished…but only very moderately. so if i was at 100% before the drug, it dropped to maybe 95%. this didn’t bother me at all, if anything i felt that it took me to a more “civilized”/less barbaric level of horniness and that I had more control over my feelings and actions while on it. I still had a very healthy sex drive. There were no performance problems.
Looking back on it now, i do think there was a VERY gradual decline over the years in libido (maybe it drifted down to 90%), a slight lessening in hardness while erect, a minor decrease in average orgasm intensity (though it varied a lot depending on the situation), and most noticeably, a lessening of penis and testicle size while flaccid. I started to, all of a sudden, get shy in the gym locker room, because it just seemed so small and not “full”…but i didn’t think much of it, because it still “worked”. I thought maybe this all had to do with ageing but in the back of my mind, i thought it might be due to the Propecia…but again, it didn’t bother me too much. I was still at 90% libido and full function.
fast forward to April 2010. Due to a hectic work and travel schedule, I neglected to renew my prescription. I went about two weeks without taking propecia. When i went back on it after this hiatus, within just a few days (maybe 4-5), I noticed a dramatic change. it was as if my penis had shriveled up and died, and was smaller than ever (while flaccid). Urinating became a drippy messy situation. a week after going back on the Propecia, I had no sex drive, no sexual interest and no sexual function whatsoever. I had gone from 90% libido to 0% or maybe 5%. I was sure it was the propecia, and that is when i discovered this forum. I freaked out, thinking i might spend the rest of my life chemically castrated, and I went off the drug almost immediately. Within about 7 days of being off the drug, I was back to 100%…hornier than ever. Phew, I thought. A week later I had a “shrivel up a die” episode again, and I thought “oh, here it is, the ‘crash’” but it resolved itself within 2 days. everything was fine.
This was in May 2010. I stayed off the drug throughout most of the summer. I convinced myself that it was the stopping and starting the drug that was the problem, and I also convinced myself that the rapid recovery after stopping taking it meant that i wasn’t susceptible to long-lasting side effects, and that i could also re-start and see how it goes.
So I started again in about late July 2010, after a roughly 2.5 month break. BIg mistake.
no dramatic impact like before, and everything seemed fine for about a month. but then i noticed a gradual decline in sex drive and function. I thought “oh it’s just temporary, I’ll keep taking it, and it will pass”. but it didn’t pass, it got gradually worse. by early October I was probably at about 10%-15% of pre-porpecia sexual function and libido level…so not the 0% as in the prior crash, but pretty close.
I went off the drug for good. my first day without it was Oct 10, 2010 (10/10/10! easy to remember)
I was expecting everything to return to normal quickly, as before. but that didn’t happen.
There was basically no change for quite a while. Again, I freaked myself out by looking at this forum, so I had to stop visiting this website. I convinced myself that things would get better over time…I noticed there were a lot of stories on this forum from several years ago, with no followup…I deduced that the people gradually got better–over time, and then just stopped posting…after all, if it had continued to be a problem, i figured they’d still be posting. I recognize that there are some posters who do continue to have problems after years and do conitnue to post, but i guessed (hoped?) there was a larger silent majority who drifted away form this forum as they got better. i have no idea if it’s rue, but this is what i told myself to keep myself from going crazy. I decided to just be patient.
it has now been about 9 months since i quit. There has absolutely been an improvement, but i am still not where i’d like to be. the improvement has been VERY slow, and not in a straight line. i have good days and bad days. I had my first nighttime/morning erection about two months after quitting. I also started having very vivid erotic dreams, which I realized i hadn’t had at all in years, while on the propecia. first good sign. after about 6 months, sexual function more or less returned and has gotten better since. I have been able to have sex and have had it a few times–went fine…
BUT i still suffer from an extreme lack of libido. i can have sex and i can masturbate, but it is a chore and not really satisfying. I can get aroused, but it takes quite a lot of doing and stimulation. I can get hard but it fades quickly (but, staying power has improved over time) I am, as i like to say, “immune” to porn…it does very little for me…only the real-life prospect of sex gets me interested…well, at least that does! but i have almost no interest in dating or even going out to bars to meet people. so that’s a problem. I am now almost 35 and i’d like to get into a relationship but that won’t happen without a “drive”. As i said, i’ve had sex a few times since being off the drug. i have had other opportunities, but declined them…like i said, a chore.
so i would say that my sex drive has gone from maybe 10% of pre-propecia levels (in Oct 2010, right when i quit) to maybe 35-40% today (July 2011). It may never get back up to 90-100%, and i’m okay with that, but i would like it to get above about a 60% 
as i said, the improvement has been very gradual, and imperceptible on a day-to-day basis. but when i think back i can detect certain milestones, e.g., first morning wood, first erotic dream, semen volume and thickness improving over time, erections lasting longer, etc., most recently, i’ve noticed that i feel and look bigger and fuller when flaccid…i’m no longer embarrassed in the locker room!
so all this has been positive. so i am optimstic that things are going in the right direction. I believe this drug screws people up, perhaps permanently. I may never get back to where i was before, but i’d be happy with continued slow improvement over time. I think time is the best cure here, certainly it has been for me…but everyone may have different rates of recovery. I live a fairly healthy lifestyle, so i’m sure that helps, but i am skeptical of taking any drugs or supplements now…I want to avoid taking things and just would prefer my body heal on its own, which it seems to be doing. I did try taking viagra once about 3 months after going off the Propecia during my first post-drug sexual encounter. it gave me a big stiffie, but i was effectively numb…it did nothing to improve my libido or sensation. i ejaculated but it felt like nothing.
I have been to my doctor and told him about this. he hadn’t heard of the problem, his initial reaction was that is was psycho-somatic but i basically screamed at him and told him it wasn’t. He did some basic blood tests, and everything, including Testosterone levels, seemed fine. He then did some research and got back to me. He said he had heard that a short but intense course of Cialis could help jolt the system and libido back into action. I said i would consider that but wanted to wait a few more months to see how things progressed before taking any more drugs.
He also referred me to a sexual health doctor, who was definitely aware of the problem occurring in other patients and he assured me that it should get better over time. He also said I could consider going back on the propecia at a half-dose, as I’m not a large person (I weight about 140 pounds) and the full does may have been too much for me. I said thanks, but HELL NO, i’m never going back on. it did get me thinking that i did lose quite a bit of weight (gradually) over the last several years…form a peak of 180 in 2005 gradually down to 140 last year and today…maybe he was right that the dose was too strong? no matter, i still wouldn’t advise my worst enemy to go on this drug.
I also spoke to my dermatologist (who is a hair specialist) about this, he hadn’t heard of the problem and thought i just hadn’t met the right person…
MANY of my friends are on the drug and have been on it for years…including those who have no hair loss but are paranoid and see it as a safe protective measure. I have been going around telling them my story. I like to use the phrase “shriveled up and died overnight” to have it really hit home…i’m not embarrassed… In general, they believe me but i don’t think they understand the gravity of it. I can understand this. If you are a normal healthy 20 or 30something male with a healthy libido, it is incomprehensible that you could lose your sex drive and function, especially so rapidly and thoroughly. and if you’ve been taking propecia for years (as many of them have) with no problems, then you would not take seriously the idea that problems could develop later. They take their sexual function and sex drive for granted. so people don’t take the risk seriously.
one final note, this whole experience has made me realize just how dependent emotions like love, and even our desire to hug and cuddle and spend time with people, are on chemicals in our body. People have romanticized these things as being spiritual or innate or eternal, but that’s not the case. they are biological. that is not to devalue such feelings, but just to make us realize that they are fragile and subject to being impaired if we don’t take care of ourselves. I almost look at sex drive as a kind of sixth sense. sometimes, even now, after a partial recovery , i can climax fully but the sensation is muted. I liken it to eating your favourite food while having a cold. you know it’s good and what it should taste like, and can enjoy it, but the whole experience is muted. so we should take care of our libido just like we take care of our eyes and ears, and not take it for granted. okay, sorry for the philosophizing…
I’ll try to check back in at the one year mark in October and let you know how things are… STAY POSITIVE!
kbob
COPY AND PASTE THE FOLLOWING INTO YOUR OWN POST, then answer the questions.
-
Where are you from (country)?
USA -
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 -
What is your current age, height, weight?
35, 5’8", 140 pounds -
Do you excercise regularly? If so, what type of excercise?
yes, cardio, weights, marital arts -
What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
generally healthy, varied -
Why did you take Finasteride (hair loss, BPH, other)?
hair loss -
For how long did you take Finasteride (weeks/months/years)?
12 years, on and off -
How old were you, and WHEN (date) did you start Finasteride?
1998, age 22 -
How old were you when you quit, and WHEN (date) did you quit?
2010, age 34 -
How did you quit (cold turkey or taper off)?
cold turkey -
What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
propecia -
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1mg/day -
How long into your use of Finasteride did you notice the onset of side effects?
after 12 years…more details above -
What side effects did you experience while on the drug that have yet to resolve since discontinuation?
Put an X beside all that apply:
Sexual
[x ] Loss of Libido / Sex Drive
[x ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[x ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[ ] 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
[ ] Depression / Melancholy
Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ x] Testicular Shrinkage / Loss of Fullness
[ x] 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
[ x] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature
[ ] Other (please explain)
-
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
none -
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)?
none -
Anything not listed in the above questions you’d like to share about your experience with Finasteride?
see above -
Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
see above
