There is hope

Here is my story. I am 30 years old and started taking propecia at the age of around 24. I took propecia for about 4 years. During that time my hair definitely stopped falling out and I noticed obvious regrowth as well. HOWEVER, around about the 2 and 1/2 to 3 year mark I really began to suffer from the sides. I had just started to date my wife and even though we were having plenty of sex, I knew it just wasn’t right. From there, I got to the point where I couldn’t even keep it up long enough to finish. Very embarassing to say the least. I initially wrote it off as nerves or something. But deep down I knew things weren’t right. I also began to notice little changes, such as increased belly fat and a slight case of acne around the lower lip area. I decided to try and come off the drug and immediately noticed an increase in libido and sex drive. But I could not stand to think that I would lose my hair again and went back on. This cycle was repeated a few more times unitl I eventually decided sex was better than no hair. I stopped taking the drug just before my honeymoon and performed well. Bad news is that upon returning home from our honeymoon the sides returned in full force. I couldn’t figure out at the time how I could all of a sudden get worse. I now understand that this is common with users of propecia.

The worse news is that my sides continued to worsen for about the next year. It was like my body was in a tailspin and completely out of whack.

It should be stated here that I have a masters degree in exercise physiology and have a thorough understading of anatomy and physiology. BUT NO ONE can tell me that they truly understand what happens to those of us who suffer from propecia. I tried every approach in the world for the next 6 months to a year, with little to no success. Zero morning wood, littel desire for sex, premature ejaculate, no mind body connection to my penis, shrunken testicles, it all sucked.

This is where the somewhat good news begins. About 3 months ago I decided to try and come off of caffeine. Now I wake up everyday around 5 am and go to bed at 11. Plus I am an avid marathoner and triathlete. So life without caffeine is tough. However, I wanted to see if it was possibly throwing my cortisol levels through the roof and interfering with testosterone production (cortisol can directly affect the action of the Leydig cells). Within days my morning wood was back. I had an increase in sex drive and actually had sex with my wife without having to worry about losing my erection.

BUT, the sides returned about a week later, albeit it to a lesser degree, when I had some major stress come up in my life. This is bad right, NO. I am convinced that we are all able to repair the damage done. THIS TAKES MAJOR TIME. This stuff about gene expression and permanant sides is not true.

I now consistently have morning wood, no longer have premature ejaculate, and have noticed the hair on my legs getting thicker, whereas before it was kind of patchy (another side I forgot to mention). My balls are also firmer and larger, but this is a littel inconsistent still with some days better than others. Do I walk around with a hard on all the time???No not yet. However, I am definitely better than I was a year ago, and six months ago, and getting better everyday, just very slowly.

My message is this…We have all thrown our bodies out of whack big time. But the body is a self-regulating mechanism that is more than capable of fixing itself if given time. People on here who scream that these sides are permanant are just making everyone panic. I have good and bad days, but the good days prove to me that this shit will be better one day, for all of us. Believe that things will get better, dont panic from reading negative posts, and remember that everyday is one step closer to recovery.

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Congratulations on your improvements thus far, hope it continues.

While there are those who seem to improve with time, unfortunately there are also men who have been off for more than a few years and have seen little, if any progress. Also, there are those that don’t drink pop or coffee (such as myself), who continue to suffer… so the caffeine-cortisol connection does not apply in my/our case.

As much as I’d like to “believe” this will just “correct” itself, that has not been the case thus far almost 3 years off. We’ve debated this concept numerous times on this board, and I personally am still of the belief that since we took a pharmaceutical medication (which is a Testosterone analogue, btw), that it will likely require further pharmaceutical medications to correct, and possibly investigation at the genetic level to see if in fact something did change with us, to try and pinpoint where the problem might ultimately lie.

That is my personal opinion, and of course you are entitled to yours! :slight_smile: Believe me I wish I could “believe” my shrunken penis and testicles into being “big and full” again, would like to “believe” that the lumps behind my pecs will disappear, and that I will someday wake up with a raging libido, spontaneous erections, and nocturnals/morning erections nightly/daily like I had before Finasteride – but thus far no matter how hard I’ve tried to think about making these problems dissappear, or “will” myself into getting better, nothing has changed.

In short, we messed with something that affected our endocrine system. This is not controlled by the mind, it is controlled by hormones – hormones which are under the control of negative feedback loops which we have no conscious control over. We can try to a certain extent via diet and excercise to make positive changes, and in some cases these definitely do help to a point – but what of those who have changed nothing with their already healthy pre-Fin lifestyle, other than having taken Finasteride, and continue to suffer after discontinuing the drug? Finasteride is the only factor.

Again, I agree with you that we need to keep a positive mindset, that goes for anything in life – but I’m also being realistic. For those who have not seen major progress, this is the reality… and some (most) of us don’t have, or want, the luxury of wasting time/life passing us by in this state to see if, in the rare case, spontaneous “recovery” might somehow occur (ie in years? decades? Nobody knows… in the meantime we continue to suffer – hence the seeking of treatment).

Irregardless, thanks for your post and welcome to the forum, I mean no bad will, but just looking at this from a different perspective. I wish you future good health and please keep us updated on your progress.

Yes i understand exactly what you mean and i do believe that the hormonal system is the problem. I actually taught college level physiology while working on my masters degree and have a thorough understanding of the endocrine system. However, as I believe you would agree, no one really understands how propecia has affected our bodies. With that in mind, the best way to fix our problem is for everyone to work together on this rather than having some doc make a half-ass attempt at solving our problems. I should have added in my first post, but I got tired of writing, that cutting caffeine out of my diet was just a small fraction of what I did to make some progress. If you look at the body of research that is currently out there, a few natural supplements do seem to have a direct effect on the action of the leydig cells. These are the cells that actually work in the testes to produce testosterone. These supplements will, it is believed, mimic the action of LH. As a result, the closed loop cycle of endocrine control is not as much of a factor. I have tried just about all of these supplements with varying degrees of success and failure. By far, the most success has come with the use of cordyceps sinnesis. I have been taking 6 grams per day. This is much more than you will see on any of the bottles but is what I have found to be necessary for progress. The limited amount of clinical research out there has been done on rats. However, it has shown the ability to stimulate testerone release and has been used for ages in some parts of the world for impotence. Amazingly, I have noticed a huge gain in the size of my testes. I have not noticed as much of an increase in sex drive. Although there has definitely been an improvement. Erections are much firmer and sperm seems to be thicker. Among the list of other things I have experimented with are zinc, longjack, rhodiola rhosea, GABA, horny goat weed, garlic (with I am still taking), ginko biloba, ginseng, multivitamin, fish oils, etc. I have taken careful note of how each has affected me and tried to eliminate those that make me feel worse. VERY IMPORTANT, saw palmetto, in any form, seems to have an immediate finasteride like effect. It was included in an organic superfoods drink that I tried for a while, and it seemed to numb my penis consideribly and made it very difficult to obtain an erection. Exactly like when I was in the worse of my propecia sides. As soon as I eliminated it, progress continued to be made. I definitely believe that we are screwed up big time in regards to dht and its influence on our penis, prostate, etc. However, as i have mentioned I think this will get better.

So here are the supplements that have offered some success. They are NOT a cure, but a push in the right direction. Fish oils, garlic, cordyceps, mutivitamin (be careful some contain sawa palmetto as an added “bonus”), acetyl-l carnitine.

The ones that have hurt my progress, I believe, are saw palmetto, gabba, rhodiola rhosea, nettles root/leave. It does not make sense as to why some of these have made me worse. Rhodiola should decrease cortisol, hence increase test but I feel it makes it hard for me to achieve an erection. Nettles root is believed to increase free test, unfortunately, it is also believed to be a 5-aplpha reductase inhibitor, albeit not to the extent of propecia. I believe it affects me much like saw p and prop.

These little experiments that I have done on myself over the last 2 to 3 years have been frustrating but helpful in trying to figure out whats happened with me body.

For those of you who do not believe in “natural” cures. My father was recently cured of a disabling neurological condition with megadoses of vitamin B. He had been treated with pharmaceuticals for five years with zero success and was planning to have a brain operation within the next 6 months. I did the research, we took a chance, and he is 200% better than he was with the poison that the neurologist had been feeding him for five years.

I sympathize with all who are on here and do not want to offend anyone with my comments and/or downplay the seriousness of what we are all facing. BUT we can be fixed, I truly beieve it. We just need a push in the right direction in order to get our HPTA and hormonal system back on track. As for myself, I continue to improve, albeit slowly. I just try to think about how much more I will appreciate everything when this is all over.

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Nice post. Great post. I believe you.
All the negativity on here, even if people think its true, i.e. genetic changes, permanent cell death, tissue changes, etc. is a bunch of rubbish I think.
Again, even if people think its true, it utterly, virtually does nothing to post that shit. Sorry to all who do, or who may get frustrated, and who vent by writing, but I truly believe it helps noone and only HURTS people’s progress on here.
I think people should start to try to make this site a place for positivity, and positive feedback.
The research and archives, and studies sections will always be here, but just like our mothers always told us: If you don’t have anything nice to say, dont say anything at all. It only hurts people. Not help.

Stay and be positive boys. We all have those moments, but just try to keep them to yourselves.
Newcomers, do you reading on here. Read posts such as Mitch’s, Galapogos, Reason, or LetsConvenience or a few of the others in recoveries that EVENTUALLY recovered.
Mind over matter boys. Its a long hard road. I am only about 75%, and still very frustrating, but I still know I will continue to get better as long as I try to take care of my body, eat the right things, and believe. Reduced stress is a big thing.
Just my two cents. Hope I didn’t offend people.

Wow, thank you so much to the original poster. I developed Peyronie’s a year ago, and I just checked my Multivitamin which I have taken religiously since then, and took before then as well. Sure enough, 65 mg of “Men’s Support Complex” containing Saw Palmetto. I never would have dreamed. Guess I’ll need to get a new one. I wonder if this has hurt me, I guess there may be no way to know. Hopefully yes, then I will get better once I discontinue.

Two questions:

  1. where can I find more information on this cordyceps sinnesis, and do you recommend a certain kind?

  2. I assume that you refer to a garlic pill. Do you know if eating actual garlic would be as effective (or even possibly more effective)? I wonder if cooked garlic is effective or if it would have to be raw.

  3. I guess I should also ask do you know what a good multivitamin is?

I don’t know, but I just checked the label on my Centrum bottle and it doesn’t seem to contain saw palmetto.

One without Saw Palmetto.

This seems like a pretty legit post, I’ve found that the sleeping cycle is very, very important.

Coconut oil might also be something people on here should look into.

My libido right now is alright I guess, it’s not the highest right now but I think it’s mainly psychological (I recently had a bit of a nasty breaking-off with a ladyfriend and it temporarily depressed me to a point where I didn’t even want to think about sex).

Anyways I’m going to give myself a run of primordial performance’s testosterone recovery stack, I am also thinking of adding fatty supplements and increasing my intake of good fat, so I’ll be taking omega 3, sesamin oil (supposed to increase bioavalability of tocotrienols), coconut oil, and possibly CLA. Right now I’m taking about 2 spoonfulls of some virgin olive oil laying around before I go to bed, I’ve only started doing this last night so I can’t tell if it does anything, I figure coconut oil is better, but I figure I might as well take both olive and coconut oil as they are both regarded as being good fat.

On top of that, I am thinking of perhaps taking an iodine supplement, since I’ve noticed that in my hormone panel from the summer, my TSH is at 2.2 and I read that even if the reference range doesn’t state it, any TSH level above 2 is basically considered hypothyroid, not to mention I still do have a pretty nasty sensitivity to cold, thank god the winter is over. I am thinking perhaps a little lean muscle weight gain may help me out. Call me a vain asshole, but all of this stuff, combined with curcumin, minoxidil, and nizoral oughta grow back some hair too.

Also very importantly I’m going to make the most out of my life, I’ll be going back into college and surrounding myself with many people to converse and be associated with me, as well as making sure I have a steady schedule. I also enjoy playing music and I am thinking I can take myself to greater heights by doing a really good job at it.

All in all this is a very legit post and I think this guy has the right idea, there are some pretty ridiculous irrelevant and misguided things being posted on this forum, from candida, to blood type diets, to eating only one meal a day (ideally it is best to eat 6 small meals throughout the day, but this tends to not work out for most people). Coconut oil is also supposed to be a potent killer of candida, so what have you got to lose?

Umm, saw palmetto is a DHT inhibitor.

Saw palmetto’s components are free fatty acids, free fatty alcohols, monoglycerides, and phytosterols – nothing that is not in things we eat everyday like other berries, grains, vegetables, fruits, etc.