Cap's Story

Member Stories
#1
  1. How did you find this forum?

Google

  1. What is your current age, height, weight?

26, about 6 ft even, 145lbs last time I checked

  1. Do you excercise regularly? If so, what type of excercise?

I never had before, but since stopping Propecia I’ve tried to hit the gym and do some serious weightlifting fairly often.

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

I used to eat junk food all the time, but now I’m trying my best to eat more healthy

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

Hair loss

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

3 months exactly, August 2012 to October 2012

  1. How old were you when you started Finasteride?

25

  1. How old were you when you quit?

26

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

Cold turkey

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

propecia

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

I took the pill as is, which I think is 5mg each

  1. How long into your use of Finasteride did you notice the onset of side effects?

Almost immediately, but I was assured it would go away with time, so I kept taking it

  1. 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
[X] Loss of Morning Erections
[X] Loss of Spontaneous Erections
[X] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[X] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[ ] Confusion
[X] Memory Loss / Forgetfullness
[X] Stumbling over Words / Losing Train of Thought
[X] 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)
[X] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] 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
[X] 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?

So far I’ve only been taking a bunch of supplements, but I think I’m going to try Progesterone soon.

  1. 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

  1. Anything not listed in the above questions you’d like to share about your experience with Finasteride?

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

For a number of years I noticed my hairline was receding. I didn’t worry about it too much because it seemed to only be receding at the hairline, was otherwise pretty thick, and was receding fairly slowly. Within the last year or two, though, it seemed to pick up the pace and began to recede more quickly. I’ve had anxiety issues my whole life, so this freaked me out quite a bit. Eventually I saw a hair doctor around here (a Dr. Alexander, may he burn in hell) who prescribed me Propecia. He did not inform me that I could be potentially damaged forever, or I most certainly would not have taken it. I began taking the medication and experienced side effects almost immediately. I was concerned, but assured they would go away with time and if they don’t, I could just stop taking it and they would clear up within a couple weeks. I finished out my prescription and since the side effects had not gone away, if anything they had gotten worse, I decided to stop taking it. Things improved over the next month or so, I wouldn’t say to 100% by any means, but it was on its way. Then about six weeks after stopping that poison I had my crash. The improvements I saw had vanished and I was devastated for two weeks. I could not function at all.

As of this writing I’ve been off the medication since the last week of October, so about 2 1/2 months. Currently my situation is as follows:

  • During my crash my penis began curving slightly to the left and seems slightly twisted. The general curve (like up/down) seems to have increased somewhat as well. I’m hoping this is not permanent. I’ve heard it go away with some guys on here that got better, so I’m hoping for that. I’m going to schedule an appointment with a peyronie specialist around here soon just to make sure there’s no fibrosis.

  • My libido is pretty much shot. I feel that disconnect everyone here describes. If I look at something arousing, sometimes my penis VEEEEERY weakly will attempt to become erect, like a little bit of blood enters the base and that’s about it. Most of the time it’s nothing. There have been a couple occassions where I was making out with my gf and it filled up more than that, so that gives me hope.

  • If I stimulate my penis I can work it into an erection. Sometimes I can work it into one that’s rock hard, sometimes not so much. All of the time it goes away very quickly without constant stimulation. I also seem to have morning/night erections, though they are pretty weak. Before Propecia I woke up every day with rock hard erections, had them throughout the day, and could have sex for hours or multiple times no problem.

  • During propecia my ejaculate was pretty much water. This seems to have improved quite a bit, but nowhere near what it was before. I try to “rub one out” every couple weeks because I doubt it’s good keeping it all locked in there. When I do, the orgasm seems somewhat normal, but shortlived. The ejaculate also shoots out instead of dribbling.

  • Brain fog was pretty bad toward the end of my time on the drug. Most days it’s okay, but there are days when it is very difficult to think straight, speak correctly, etc. Before fin I prided myself on being incredibly intelligent, verbose, etc. This has almost been the worst part as when the mental issues get back I feel very stupid, and being of above average intelligence was one of the few things I ever felt good about in my life. I’ve always had low self esteem, anxiety, etc.

  • I can’t say if I’ve had penis/testicle shrinkage or not. I want to say my testes are smaller, but I never really played around with them before the drug so it could just be in my head. I want to say my penis lost a little girth, but again, could all be in my head. It certainly hasn’t been significant enough for me to be 100% about it.

The past few months seem like a blur. It’s been the hardest time in my life. I’ve thought about killing myself frequently. There are a lot of horror stories on here, but there are others like those posted by Chi and light at the end, and those give me hope. So far I’ve only been taking a regimen of zinc, magnesium, vitamin D3, iodine, a B complex, and sometimes 5HTP each day as well as trying to hit the gym and eat better. While I’ve certainly crashed, I’m fairly early in this journey and while I’m certainly not capable of sex or 100% mentally, I’m not as thuroughly destroyed as a lot of stories I’ve read of others, so I’m hoping that plus my youth is a good sign. I have appointments soon where I’ll have my T levels checked and see what my options are. I’m also probably going to order Progesterone soon as I’ve heard some great things. Past that, I guess it’s either hope for a natural recovery or attempt a last resort like Chlomid. I’m just very scared of that making things even worse. I hate living in this constant state of anxiety, depression, and all the symptoms. I want to be myself again. Every day I regret taking this poison. I should have followed my gut, but my anxiety about my hair got the better of me. :frowning:

Thank you for reading. If anyone has any tips or things that worked for them, please let me know.

#2

“Rubbed one out” today. Orgasm feeling, which up to this point had remained pretty awesome, was pretty much nothing. My penis tingled for a moment and that was about it. Ejaculate shot out with less force than usual. I’ve been very depressed and anxious the past few days, with a bit of brain fog. I’m hoping this worsening is just a product of that and not things actually going further south. I picked up some additional supplements people have said helped them. I think I’m going to grab Tribulus, some progesterone, and whatever T3/T4 is. It seems the one constant in recoveries is that people were doing something about it. Taking supplements and hoping for the best doesn’t seem like it does a whole lot. Seems like you have to just keep throwing everything you can at it until something sticks. I’m going to start lifting heavy weights most days as well.

I also had a phone consultation with Dr. Goldstein today. It was an encouraging talk (he said they have a pretty decent recovery success rate), but going out to see him is going to cost $540 which I don’t have currently. I guess that’ll have to wait.

#3

Right nut seems to have shrunk to the size of a very large grape. Left nut seems relatively normal. Penis size seems more or less normal, excluding the bend to the left, increased upward curve, and axis rotation…

#4

Did Goldstein discuss any particular protocol?

#5

Not really. The call was very brief. I described my symptoms and all he mentioned was that he would focus on hormones, as he believed that was the issue (at least in my case). They apparently require me to bring 7-9 blood tests when I visit, so I guess I’ll get on top of getting those done. I have to wait until Monday to schedule them though because they were supposed to email me what blood tests they need, but didn’t. It’s a lot of money and who knows if he can cure me, but he said he had a pretty decent success rate and I’m getting to the point where I really want this to be over. Like I literally don’t have to strength to keep this up very long, I’m not a strong person, emotionally or physically. I think about suicide pretty much every day. Anyway…

I’m trying to keep up hope, but it’s hard. I’ve always been the type to assume the worst. It’s very saddening to see people who have taken the poison for less time than I have and they’re still messed up 10 years later. At the same time, I’ve read about those that took it for 10 years and recovered in less than one year. I think that’s what gets to me the most, the uncertainty. I could recover next month, next year, 20 years from now, or never. I can’t even look at my current function and say, “well I don’t have these symptoms, so that’s good” or “I have this function still, so I must be getting better.” For example, since quitting fin there have been a couple times where I thought about something and got an erection. A lot of days I’ll wake up with one, although it’s weak. Sometimes I’ll be in a situation where before fin I would get aroused, and I can feel this VEEEEEERY slight tingle reminiscent of the one I remember from before Fin that leads into an erection. There were even a few times when it tried to fill up and got maybe half strength on its own. Yesterday I was laying down trying to sleep and got a random one, though it was weak and died as soon as I paid attention to it.

But with this shit none of that matters or means anything. It’s like all bets are off and you’re just in hell until you’re 100% again, whenever that is. You can’t even look at what worked for others for recoveries because one guy was cured by progesterone, one guy by huge amounts of iodine, one guy by chinese herbs, one guy by just working out, another by doing absolutely nothing. Then others have done all those things with no results.

I think either you get lucky and naturally recover (probably attributing it to whatever you were trying at the time), or you don’t. Maybe if you’re REALLY lucky you stumble across something that kickstarts your system. All you can do it try to be as healthy as possible (not that it matters) and hope you’re one of the lucky ones.

Sorry I sound so negative. I just feel very hopeless right now. I’m crying as I type this. :frowning:

#6

Cap,

Thanks for the reply and good luck with Goldstein. I have to believe him if he says he’s had some good success with other PFS patients. maybe the next one will be you.

As far as not being strong, I can empathize. I’m in month 7 of this crap and just had a bad few days, which led me to cry on my wife’s shoulder several times today. I hope you have a support person, because she is what is currently getting me thru this. Trust me, I feel like giving up from time to time, but then I have a good stretch and find some hope. Plus, sounds like neither one of us has tried any medical approach to this yet. So hopefully Goldstein will be able to provide some help. You also have to keep faith that as PFS comes out in the open more, there will be research that pays off. That’s where we have to be patient, although thats the hardest part.

Don’t give up … We’re in this together.

#7

I asked Dr. Goldstein if he had ever cured anyone, as in they are 100% back to normal and no longer need to be on any medication. He replied, “To be very honest - the jury is still out on cure - we do improve the situation in many patients.”

What point is there in going on? Living your life impotent, hoping that maybe next month is the month your body corrects itself? Hoping you’re one of the very very lucky ones who get better randomly? I can’t live like that, and I won’t.

#8

Saw a couple doctors today. Couldn’t tell if they believed me or not. Kept going back to anxiety and depression being a large factor, if no the complete cause. They agreed to do some basic bloodwork, T and free T. They won’t do the rest unless T comes back abnormal, which it probably won’t. Orgasm has pretty much flatlined. Remained fine until recently, now it’s a slight tingle in the penis for a second, then nothing. Ejaculate has less volume and shoots out with less force, though doesn’t dribble out yet. Felt around where penis began to bend suddenly after crash. Feel a definite ridge. Hope it’s a vein, but probably a plaque. Getting harder to sleep for long periods. Hair falling out several times faster than any year preceding Fin usage. Body hair growth had slowed, now seems to have almost stopped completely. Symptoms have generally gotten worse over the last month somehow. Afraid of gyno and worse symptoms developing. Constant fear, anxiety. Think about death every day. No hope.

#9

They dont believe you I had the same bullshit with my own GPs.

When I had anxiety and depression I did not have the physical and sexual problems I have now.

#10

What hope is there for recovery if I’m eating well, working out, taking supplements, and actively getting worse? I’ve destroyed my life forever. Whatever dreams and plans I had for the future are done. Things were finally going right for me for the first time in my life, and this pill took it all away. I never fully understood suicide until now. It’s not a feeling of “oh, I’m sad, I want to die.” It’s a feeling of wanting something to end. Wanting something to stop. Feeling empty.

#11

dont give up, the fight is not over … this is a very crucial time and we must stick together

#12

There’s no hope for us. We can only spend our life hoping for a natural recovery which will never come. That’s not living. Our lives ended the moment we took that first pill. Now we’re just ghosts.

#13

There is absolutely hope. Stay strong!

#14

There’s ALWAYS hope!

There are so many methods to try to get better already. And if we all keep trying things and report our findings, we will get a better picture about what works and doesn’t. We’re in this together.

#15

Hey guys, please take a look at some of the studies I’m posting. You will then realize that there is already tons of research into androgen receptors, signaling, etc. We just need to support our cause via the PFS foundation and Awor’s studies. We can do that by donating money and participating in the studies.

#16

Cap- I know this is the worst but def hang in there. I have been off 9 months and for the first 6-7 months I would have 3 weeks no feeling when orgasming and then 2 good days and then back. Now I feel a good orgasm almost everytime except for a 2 day period per month. This seem to change in pattern overnight. I am also getting more libido than I did for the first 6 months. I feel like I was doing more testing of erections and orgasms the first few months and now I get some slight urges. I also have more brain / penis connection as time goes on. My point is that it could take a long time but I think there is a upward (yet sideways and slow) trend

#17

they are right bro, good things will come your way, but you have to stay strong … we will find a way to manage this and perhaps even far more, and you definately want to still be here when that day does come … hang in there man, we are here for you !

#18

Hi Cap, I know if you read the recovery section it is very discouraging and to see that there are not many posts can make someone lose hope and it is true that there is no cure for PFS yet, but to see it that way is not really the truth. Here on this forum are a lot of guys who improved alot in time - with the help of supplements, medications, diet or they recover to a certain degree naturally. You have to find out what helps you the most. A few months off is still very hard and you need to stay strong for maybe some weeks or months. The first months were hardest for me. But it is possible to get better in time… I also think that the recovery section is not that full because many pfs sufferers recover to a certain degree and they accept their issues because they can live with it and they leave this forum behind and they dont want to deal with this PFS crap anymore, they dont pay attention to it anymore and recover naturally in time without posting it…
In my case I left this forum for 9 months because to read it made me feel even worse. One day when I got a little better I thought I was strong enough to deal with this site and this time it was a lot easier and then I found a lot of good information here. So maybe staying away from this site could help you also…

#19

Thanks for the support, guys. I still feel hopeless and think about dying most days (actually gave it a shot last week and failed, sadly enough) but I’m trying to hang in there. I started taking MACA pills the other day and for the last four days or so I’ve been dreaming, usually about sex. I’ve slept for 8+ hours, but I never really had the sleep issues most guys on here seem to have except when super stressed. I wake up with at morning erections of varying quality, but that’s more or less been present since quitting. They kinda hurt sometimes, likely due to the peyronie plaque I’m fairly certain I have. I’d like to think of those things as good signs, but nothing really means anything with this condition so who knows.

#20

Also, vision seems to have gotten a little worse. I’ve always been nearsighted, but now anything that isn’t two feet in front of my face is blurry. Even looking at the computer monitor kind of strains by eyes sometimes. Hopefully that clears up or at the very least does not get worse.

That really irritates me are all these side effects I had no idea about, like vision or brain fog. I was already VERY on the fence about taking this poison just knowing about the sexual sides. Had I known destroying my brain or vision were even remote possibilities I never would have touched it.