1st post - my story... all comments/questions are welcome

Member Stories
#1

  1. Where are you from (country)? USA

  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

  3. What is your current age, height, weight? 26 y/o, 5’9", 165 lb

  4. Do you exercise regularly? If so, what type of exercise? Not very frequently, but pushups, situps frequently throughout the week. Not much cardio…

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? Generally healthy, no restrictions…

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

  7. For how long did you take Finasteride (weeks/months/years)? 13 months (11/08-12/09)

  8. How old were you, and WHEN (date) did you start Finasteride? 24

  9. How old were you when you quit, and WHEN (date) did you quit? 25

  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? Propecia (both generic and brand-name)

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

  13. How long into your use of Finasteride did you notice the onset of side effects? towards the very end (last 2-3 weeks or so, which was just past the year mark)

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation? extremely low libido, erectile dysfunction, penis shrinkage, gynecomastia

Put an X beside all that apply:

Sexual
[X] Loss of Libido / Sex Drive
[X] Erectile Dysfunction
[X] Complete Impotence (not complete, but close to it)
[X] Loss of Morning Erections (I seldom get them)
[X] Loss of Spontaneous Erections
[X] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] 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
[X] Lack of Motivation / Feeling Passive / Complacency
[X] Extreme Anxiety / Panic Attacks
[X] Depression / Melancholy

Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[X] Testicular Pain (seldom)
[ ] Testicular Shrinkage / Loss of Fullness
[X] 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”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] 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? hormonal tests, MRI on pituitarity gland, Cialis, arginine tablets, Kegels, hypnosis, acupuncture

  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)? Don’t have specific numbers, but went to an endocrinologist, where she told me everything was normal, except Prolactin, which was only ‘slightly’ elevated.

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride? (see below)

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

OK, so here’s my story…

When I was 22/23 years old, I noticed I was starting to lose my hair. I was extremely self-conscious about it, would get teased by people every now and then, so I decided to do something about it. I saw a hair-loss specialist, who prescribed me to Propecia. I did some research on it, of course came across all the side effects (impotence, gynecomastia, etc.), but everything said once you stopped the drug, it all went away. So, I decided to start taking it. Throughout the next year, everything was all normal… my libido, erections, penis, etc. were all like how they have been before.

About a year later, after a date with a girl I had been talking to, I was unable to get an erection. I was extremely embarrassed, and for some odd reason, I feared it may have been from Propecia, so I quit the drug. I noticed in the week leading up to the date, my libido was way down. Anyway, ever since that date/quitting Propecia, my libido never returned, and I was starting to suffer from impotence. So, I went to see a urologist, and got a blood test done… he didn’t think it was anything hormonal, so prescribed me to Cialis, and let me on my way. Time went by… I was able to have sex no problem, as long as I was on Cialis… however, I questioned as to why my libido all of a sudden went down, so I returned to the urologist. My logic was… ‘I shouldn’t be depending on Cialis to have sex’. Anyway, after seeing the urologist, he took a 2nd blood test, adn this time, noticed my prolactin levels were ‘slightly high, and higher than before.’ So, I was referred to an endocrinologist (this was back in April, 2010). She took my blood tests again, said my testosterone was ‘very good’ (600 range I believe?), and my slightly elevated prolactin shouldn’t have anything to do with it. She said it was unnecessary to test for DHT, as that wouldn’t directly affect my libido. She scheduled me for an MRI to see if I had a prolactinoma, and that came up normal. I explained to her the Propecia issue, but she assured me that once you quit the drug, you should’nt have any symptoms. She came to the conclusion that it was nothing hormonal with me, and that it was all psychological.

Anyway, by this time, the girl I had been talking to before broke up with me (non-sexual issues), and I started seeing other girls. Between then and now, I’ve only been able to have sex twice without Cialis, and one of the times, I BARELY got an erection. Every other time I’ve had sex (to this point), I feel like I’m unable to do it without Cialis. There have been very rare times where I would get spontaneous erections… once was when a hot cougar I met at Friday’s was blatantly hitting on me, and the other was in the beginning stages with my girlfriend now…to be discussed>>>

Which, brings my story to current day… which is why I’m panicking. I’ve been in a relationship since October, and I feel like I’ve met the girl of my dreams. I honestly haven’t met a more genuine girl than this one in my life. However, we haven’t had sex without me being on Cialis, and, needless to say, I’m afraid to try it. Whenever I’m not on it, I don’t get any erections while I’m with her, even though I’m extremely attracted to her. She doesn’t know about my past with Propecia, or even my erection problems (Cialis has always covered), and I feel like if I tell her, she’d get really creeped out by all of it. And, to make matters worse, I’ve noticed that the Cialis is becoming less and less effective on me (am I growing tolerant to it? :frowning: ) I downloaded a self-hypnosis mp3 earlier this week, didn’t work. (I had really sexual dreams, and woke up in the morning with an erection, but that was it)… I went in for an acupuncture treatment as well, and that didn’t work either. Out of all the treatments I’ve tried, Cialis has been the only thing that has helped me.

I’ve come to notice that, on top of my extremely decreased libido, I hardly ever get spontaneous erections, only rarely do I have morning erections, and my penis just looks smaller, and feels different. I am convinced that I am suffering from PFS. I am extremely stressed out about this, and have had horrible thoughts as a result. My biggest fear is that I’m going to be permanently like this forever, and that I’m infertile.

#2

Welcome to the site. There aren’t many places or doctors that you can visit to get information on PFS. This place is the exception. Poke around the site and read the experience of others. It’s entirely possible that your body will recover on its own in time. I hope you’re one of those cases.

#3

Hey guys, it’s been at least over a month since I posted, but I just wanted to update you on my progress… I believe the last time I posted, I informed that I had gone 2 or 3 times in a row to successfully have sex without the aid of cialis, viagra, etc. with my girlfriend. Since then, things have continued to get better. There has not been a time where I was unable to have sex due to ED or anything like that. And, I feel my libido has been a lot stronger… I find myself fantasizing now about seeing naked women.

Now, let me clarify that I DEFINITELY suffered from PFS… Since 11/2009 when I stopped, I was completely unable to get spontaneous, morning or noctural erections, had zero desire for sex, my penis felt rubbery/no sensation, and I could only have sex with the aid of cialis. All the symptoms that everyone claims to suffer from, I matched up with EXACTLY. Now, what I have done to combat PFS, and seek recovery…

Starting in the beginning of February/late January, I started a daily intake of a Centrum multi-V, 5000IU of Vitamin D, 1000mg of L-Arginine, and 1000mg of L-Lysine. In addition, I decided to read online about ways to make your penis more sensitive. I came across 2 ‘exercises’… a penis stretch, and Kegel exercises. It’s hard to go into those 2 in detail, but I’m sure many of you have heard of them. Anyway… about late February/early March, I stopped taking Arginine, and Lysine. 2 side effects I noticed from the 2 (not sure if they are blame, but…) 1. I read that Arginine can trigger cold sores, and I got one in February, and 2. though I was having sex, getting erections, etc… I couldn’t last a minute in bed. Since Arginine and Lysine increase blood flow to the penis, I felt that may have been the reason why…

Anyway, after I stopped taking the Arginine and Lysine… I didn’t notice any regress in my sexual function. I was still getting erections, and being able to have sex with my girlfriend. Since early March, I just take a Centrum Multi-V, 5000IU Vitamin D daily, penis stretches in the shower, and Kegel exercises (about 10 reps) every other day. I’d say I have sex, on average, twice per week. One big thing I noticed… having sex without a condom increases your desire. Some days I get erections easier than others… and some times I get erections a lot easier than others.

I am reluctant to claim this a full recovery. I don’t want to ‘jinx’ this… but I figured I’d give it 6 months from February when I started making progress to claim it a recovery. My suggestions/advice… I feel that the biggest beneficiary for my progress has been the Kegel exercises (at least that’s what it feels like). If any of you are familiar with the Kegel exercises, I suggest when you do them to try and fantasize about sex AS STRONGLY AS YOU CAN. When I do the Kegel exercises, it’s very common that I get an erection. And, when I do the Kegels, I feel blood rushing to my penis area. Now, I’m not 100% certain if that’s the reason for my progress, but that’s my most educated guess. I also feel that ever since I was finally able to successfully have sex without Cialis that my confidence got a huge boost.

My final word for you all… recovery MUST be possible. I know the feeling of suffering from PFS, so I’m willing to offer any advice, and help anyone who also suffers.

#4

Congrats on your progress thus far. Unfortunately, there is a caveat… if it were as easy as popping a multivitamin, doing some kegel excercises and fantasizing (many men no longer have such urges since the hypogonadal loss of Testosterone post-drug), this site wouldn’t need to exist and all of us would be cured.

Per your above post, since you are not suffering from complete impotence or complete loss of desire, it seems you’ve been spared from the more severe effects of the drug, or you have bounced back in a short amount of time. I do hope you continue to improve in whatever areas you were affected, as any improvement is positive. At the same time, there have been many, many men have tried what you have before and it made no difference for them. It could be in your case that time is also a healer or your body is naturally finding its hormonal balance again.

Regardless, whatever the drug did by obliterating our 5AR2/DHT/neurosteroids while on it has had long-lasting repercussions which the medical community is still trying to understand. Either way while this post may come across as negative that is not my intention… I do hope you continue to improve and wish you luck.

#5

Thanks, Mew.

And, I know… some cases are more severe than others. But, I am certain that I suffered from PFS.

Like I said, I know the feeling, and the anxiety of it all… I want to do whatever I can to help all of you, because I know what it feels like. I’m not about to claim my story as a full recovery just yet, just that I’m making progress. I do feel like there must be a pathway for everyone to recover, though.

#6

Can you have sex multiple times a day now?

#7

hope it all works out man. Ive tried almost everything over the last 2 years and had ups and downs. Im at a low point again, so i think i’m gonna try those kegel exercises you were mentioning. Also, I think I might finally see a urologist and get a script for cialis. Even though it sucks that i’d need to rely on this pill to have sex, it’ll be nice to have some confidence back.
Are you still relying on the cialis?

#8

Hey all,

In response to the questions above…

I can have sex multiple times in a day. One interesting thing I noticed as far as ejaculation goes… if I ejaculate from sex, it takes a long time for my erection to go away. If I ejaculate from masturbation, my erection goes away instantly.

I wouldn’t say I rely on Cialis, but I do still have tablets. Basically my plan is to use them in ‘emergency’ situations… if another time comes when I’m unable to get an erection before sex, I’ll then use Cialis the next night. So far, that hasn’t happened yet (since February).

#9

(As cited from previous posts)

It feels like my libido and erections have come back to normall. I still take my Vit D daily, as well as a Centrum multi-v.

Do you think it would be a wise idea to stop taking Vit D, and determine if that is a cure for PFS? Or, should I abide by the rule ‘if it ain’t broke, don’t try to fix it’, and keep taking my Vit D and multi-v?

#10

I definately wouldn’t go off them suddenly. If it is a “cure” in your instance, and people HAVE recovered from this before (there are links to other forums about this, i don’t care to link them Mew hates putting anything in the recovery section, anyway), then you should keep taking them until your body fully recovers. This could take some months. Why stop a winning formula? Don’t let hubris bite.

What dosage?

#11

Not to derail this thread, but that is a ridiculous comment and I don’t appreciate your ungrateful attitude.

Review the RECOVERY Posting guidelines: viewtopic.php?f=22&t=4348

Excerpt:

There are additional criteria used to evaluate posts for inclusion in that section, some of which is not public as it relates to users’ activity on the forum. Prior to enforcement of these rules, that section was full of red herrings, spammers, and people who had nothing better to do than make up fake stories and claims, leading people down false paths, wasting their money and potentially putting their health at risk.

The goal of this forum has always been to provide people with useful information they can do something with, however this is not always possible due to the anonymity of the Internet and potential for abuse and fraud. Certain changes will be forthcoming to help determine users’ legitimacy, to better ensure that what is being posted is truthful to the best of our knowledge (note: Mike this is not directed at you, its a general comment).

#12

Mew,

I understand. I’m reluctant myself to claim it a full recovery. I still feel like there are some ‘highs and lows’ as far as libido go, and actually desiring sex, though since February (my start of Vit D, multi-V, Kegels), there hasn’t been one instance when I was unable to get an erection before sex.

Like I’ve said before, believe me when I say this… I know the feeling that everyone on this forum is going through. Prior to my progress, I looked on this forum at everyone’s symptoms, and realized everything that was going on with me post-finasteride matched with mine.

And, like I’ve said, I’ll do whatever I can to help… offer advice (whatever it’s worth), etc.

Do you think this would only be classified as a recovery if I stop all my treatment?

#13

Hey guys, so Ive come a long way, but I finally feel like I’m back to normal. I’ve stopped all supplements that I wa taking back in may, and am no longer reliable on anything else as far as that is concerned. Why I think I’m recovered? Well… For some reason, since June, I’ve simply been so goddamn horny. Only one thing I’ve been doing differently is that I’ve been working out vigorously and am in excellent shape now, so perhaps that has caused my testosterone levels to go higher? Either way… My libido feels like it did prior to propecia and I find myself wanting sex a lot. On top of that, my hair has been progressively falling out, and I’ll probably be bald within a year or so. If you track my previous posts, you’ll notice that I had seen improvement since beginning of 2011, as I had started becoming able to have sex without cialis. Though there were seldom times my sex drive was down and I couldn’t get it up as easily, as I stand now… I feel good. What do you guys think… Is this a recovery? I had always been reluctant to declare myself as one.

#14

BIG congratz to your recovery!!! I´m very very happy for you!

#15

Are you still taking Vitamin D? if not since when you have been not taking?
while I was on vitamin D3 5000IU I was free from ED though low libido but I had to lower my dose because of kidney pain so my ED came back.I have been on Vitamin D since December 2009.

#16

I haven’t taken Vitamin D since like mid-may. I haven’t taken any sort of vitamin supplement (no fish oil, multi-V, etc.). I’ve been working out 3-4 times a week, and trying to eat healthy. I feel like I’m in good shape, and I feel like my body looks ‘good’. Have you tried exercising regularly, and eating healthy? And, have you tried having sex at all? I also noticed that the more I have sex/masturbate, etc. the more I want it as well.

An example of why I think my libido is back… this weekend I had a female friend from CA visit me. I tried getting with her (banging her) on Saturday night, but she wasn’t feeling it… for moral reasons, apparently. So, when she fell asleep, I was still so horny, I texted this other girl I had been mildly hooking up with recently, and quietly snuck out of my house at 1AM to drive to her house and hook up with her… I had yet to bang this girl, as she would only let me finger her, and give me a mild handjob (but not to the point of cumming). I wanted to cum so bad, so I once I got back and snuck in my house, I ran to the bathroom and jerked myself off. Things like this never happened to me after propecia.

Regardless of the condition people are in, I feel like there is hope for everyone.

#17

that are good signs. I think you mentioned that you took Acupuncture. I am really interested in AP. how many times and how many weeks did you do AP? and was it with some Chinese person (no racism but I think they know AP better than any one else)?

#18

congratulations on your improvements. Pleast stick around from time to time to update us on your recovery.

One question, how is your sensitivity now, and how was it at its worst?

#19

I would appreciate to know how many boxes would you uncheck now.
[X] Loss of Libido / Sex Drive
[X] Erectile Dysfunction
[X] Complete Impotence (not complete, but close to it)
[X] Loss of Morning Erections (I seldom get them)
[X] Loss of Spontaneous Erections
[X] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] 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
[X] Lack of Motivation / Feeling Passive / Complacency
[X] Extreme Anxiety / Panic Attacks
[X] Depression / Melancholy

Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[X] Testicular Pain (seldom)
[ ] Testicular Shrinkage / Loss of Fullness
[X] 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”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

#20

Hi SPStriken, please below…

[U] Loss of Libido / Sex Drive
[U] Erectile Dysfunction
[U] Complete Impotence
[U] Loss of Morning Erections (this tends to be the time when I’m horniest nowadays)
[U…] Loss of Spontaneous Erections (not AS frequent as before, but I do get them now… two instances in the last 24 hours… I was talking to this really hot chick at a bar at about 10PM, and I got hard… another instance, I was texting my female friend from CA… the one I tried banging over the weekend but wouldnt let me… and while i was texting her that ‘i already cant wait to see her again’… got hard)
[U] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] 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
[U] Lack of Motivation / Feeling Passive / Complacency
[U] Extreme Anxiety / Panic Attacks
[U] Depression / Melancholy

Physical
[U] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[U] Testicular Pain (I do get blue balls sometimes, but don’t think it’s related to fin… think it’s from cumming only half way, and then the cum goes back into your balls)
[ ] Testicular Shrinkage / Loss of Fullness
[U…] Genital numbness / sensitivity decrease (the only thing I have noticed that is different… for some reason prior to fin whenever I’d shower I’d get turn on by washing myself ‘down there’… nowadays that really doesn’t happen anymore)
[ ] Weight Gain
[U…] Gynecomastia (male breasts) (not completely gone, but close to it, and not really visible)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[X] Persistent Fatigue / Exhaustion this would probably be the only one I would be yet to uncheck. For some reason, I have lousy sleep habits and get tired a lot. whether or not it’s related to fin? That’s unknown.
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature