My Propecia experience (two years after quitting)

[propbh]

I'd like to share my experience, and hopefully it can help people better understand the potential risk.

I began taking Propecia around the age of 23 or 24, about 8 years ago. I'm not sure anybody discussed the potential sexual side effects at the time, but if they did, my understanding is that I could stop them by quitting the drug. Initially, I had no side effects. I had a healthy sex life and everything was normal for a few years.

I occasionally heard reports of sexual side effects. But I shrugged these off. They weren't affecting me, and I figured the reports were from older men who were naturally losing their libido and erectile function and looking for a culprit. And again, I figured that if anything went wrong, I could stop the drug and go back to normal.

Around the age 29, my libido began to rapidly decline. I didn't notice it at first, but there were signs. I was single, and had a few one night stands around this time, and things didn't work as well as they should have. I just shrugged it off as too much alcohol or nerves. But as a few more months went by, I realized I no longer had the urge even to masturbate. When I occasionally forced myself to masturbate (out of habit or to make sure I still could), I could not get fully erect. At the risk of sharing too much information, it would get semi-erect, hang at 5 o'clock rather than 2 o'clock, and just be soft and sort of rubbery. I realized I no longer had spontaneous erections, even in the morning. I didn't make the connection to Propecia side effects right away. It had been a while since I heard anything about Propecia side effects, and they hadn't affected me before, so why now? When I randomly came across a magazine article about Propecia, and the description of the symptoms matched mine exactly, I quit the drug immediately.

That was about two years ago. The effects have have not improved much. I wake up occasionally to spontaneous erections, but they are not firm. I can have sex, but again, if I manage to get an erection at all it's not fully firm and honestly I doubt it's very satisfying for the other person. I reconnected with an ex-girlfriend around the time I quit, and we ended up sleeping together. She stopped me in the middle of the act and asked if everything was ok. It certainly wasn't the sex we used to have. I've since met a new girlfriend, and she hasn't said anything. This is the only way she's known me though.

I hoped everything would just work itself out, but there's been no sign of that. I spoke to a couple doctors, but they said my testosterone was in the range of normal (looking into it further, I found that my testosterone level is the average for an 80 year old man, and very low for for a man in his early thirties. Though, yes, it's technically in the range of normal for the entire population of men). They said stress could be causing this issue. The urologist also claimed my issues could not be related to my hormones because I have a beard.

The tough part for me is that there's no way to know for sure what caused this drastic and severe change in my body. It seems like many or most men have no symptoms at all. And for years I had no symptoms either. It makes me wonder if I'm just one of the few unlucky ones, or even if something else entirely caused this. Then again, my symptoms very closely fit the descriptions from men who have spoken up. And 20-30 year old men spontaneously and permanently losing their sexual function is not normal. I wonder how many men suffer these symptoms but refuse to speak up about it, because I can tell you from experience it's incredibly stressful and embarrassing to admit to.

I found hairlosstalk and propeciahelp only recently. And honestly, some of the side effects posts come across as a little kooky or paranoid. I heard a radio interview with Jenny McCarthy a while back, and she described how she could tell if she was sleeping with a guy on Propecia because his penis would be soft and rubbery. She'd ask the guy if he was on Propecia and he'd be amazed she could tell. I heard that and I said, "Yes! It's not just me." And then I said "****! It's Jenny McCarthy saying this. It couldn't be from a less reliable source."

All that said, based on my own personal experience, I firmly believe that Propecia presents a risk of severe and possibly permanent side effects that can destroy your sex life.

I seem to be in the minority, and maybe the calculated risk is worth it to you. But please be aware of the possibility and cognizant of changes in your body. Sorry for the novel.

 

[Valiant]

Hello, what were your hormone test results and when was the last time you had them tested?

 

[DoctorHouse]

Depression is going to be a side effect of any medication you are taking to get rid of something you are depressed about. Hair loss causes depression before and after you take Propecia. So how can you be so sure it really was the cause. I remember Accutane had depression added to one of its side effects. Logically, acne would definitely cause depression before or after you take the drug too. Now just think if these medication actually cured of acne or hair loss, I honestly think we would be less depressed than when we started. Just a thought. Our moods are very hard to measure chemically on an ongoing basis from day to day.

 

[propbh]

Depression is going to be a side effect of any medication you are taking to get rid of something you are depressed about. Hair loss causes depression before and after you take Propecia. So how can you be so sure it really was the cause.

You're right, I can't be sure if hair loss causes depression, Propecia causes depression, ED causes depression, or depression causes ED. It was probably irresponsible to make a claim otherwise and I've removed it.

It might have been more accurate to say ED has distressed me more than hair loss did. Hair loss was not a huge deal for me and taking Propecia was like, "hey, why not?"

- - - Updated - - -

Hello, what were your hormone test results and when was the last time you had them tested?

My testosterone was around 300. They also measured prolactin, and I don't remember the number but it was in the normal range. This was about about a year and a half after I quit (8 months ago). I don't have any testosterone measurements from before I went on Propecia.

 

[Valiant]

OP,

Some thoughts after reading your post:

You may have had side effects from taking Propecia or based upon the timing of them coming on, it could have been unrelated. Quitting cold turkey could also have caused your current hormonal problems. DHT is part of the HPTA feedback loop and a sudden return of DHT to your endocrine system may have caused it to shut down.

If your total test is in the low 300's you are either hypogonadal or borderline hypogonadal depending on the lab. And that was months after quitting so it seems as if your body did not recover.

You need to see a competent doctor who will treat your hormonal symptoms and not your test numbers. You need to restore your hormonal balance as there may be others out as well, such as SHBG or E2.

Accepting a physician's opinion that you are fine because your numbers are in range although you don't feel normal will not get you better. And a doctor who says that because you have a beard means you are okay hormonally is medical malpractice.

You need to address the hypogonadiam and don't stop looking until you find a doctor who will help you.

You may be able to feel better after getting your hormonal issues worked out.

-Val

 

[CursedMen]

At the risk of sharing too much information, it would get semi-erect, hang at 5 o'clock rather than 2 o'clock, and just be soft and sort of rubbery. I realized I no longer had spontaneous erections, even in the morning. I didn't make the connection to Propecia side effects right away.

How did you teach it to tell time?

 

[I.D WALKER]

You could have charged for your generous consultation Val! It's evident you are a knowledgeable and caring individual.l

 

[Valiant]

I.D. Walker, thanks for the post. Quitting Propecia really screwed up my HPTA. For most guys, it doesn't become a problem but for some it can. I hope that propbh finds someone to help.

 

[propbh]

Valiant,

Thanks for the information. You're absolutely right, I should seek the advice of another doctor. I sort of resigned myself to the idea there was nothing that could be done. To be honest, I'd be very hesitant to get back on any medication that affects hormones.

Quitting Propecia cold-turkey could have made things worse, although the symptoms were already quite bad by the time I quit.

You said your HPTA was really screwed up. If you don't mind me asking, how long have you been off Proprecia, and how have things progressed since you quit?

 

[anxious1]

Propecia, wat has been the reaction of ur hair since quitting? wat were ur results from the drug?

 

[propbh]

Anxious1, I was in my early twenties when my hair began slowly thinning. It continued thinning very slowly while on Propecia. Since I quit, my hair hasn't fallen out overnight. It actually seems to still be thinning at about the same pace.

I'd gladly give up every hair on my head now to get everything else back to normal, if that were an option.

 

[Valiant]

propbh, I quit Propecia twice and both times I felt worse off the drug than on it. My total testosterone was in the low 200's. I now take .25 mg per day not for hairloss but because I am afraid to quit and have another bad result. I still have elevated SHBG. I would really try to find a competent anti-aging doctor or one who treats athletes.

 

[HardlyHair]

These sort of symptoms you've described having can happen to any man at different times in his life. I had experiences like this during my twenties and thirties. Getting better and worse. And long before I started taking finasteride or dutasteride. I think there is an unreasonable expectation that men have to be super horny all the time and have erections like we did as a teenager for us to be a "normal" virile man. And we can make a bigger problem of the situation than necessarily what it has to be.

Sorry for the personal question but, you only mentioned having a problem while having sex, do you have the same problem jacking off? Because if it's not a problem or less of a problem when jacking off, then chances are there's something else going on when you have sex, such as performance anxiety or thinking too much.

...but there are things that can be done to improve the quality of erections, such as regular kegal exercises, meditative sexual practices to get in the right headspace, abstaining from seeing any pornographic material, taking supplements such as arginine, maca, horny goat weed, etc., and just giving yourself a break about not being rock hard all the time (cause over thinking it can in itself have a softening effect).

I hope it gets better for you!

 

[badbeat2]

Your story is strikingly similar to mine. I started taking Propecia at 19. Stopped at 27. I just turned 29 this week and I have been off of it for 18 months. I quit after noticing a severe decline in my sex drive.

Have you had your prostate examined? For me, I had prostatitis. I treated that by using a 3-week antibiotic regimen with a “prostate massageâ€￾ in the middle. The prostate massage was one of the most uncomfortable and painful experiences of my life, but apparently it released the bacteria out of my inflamed prostate. Since that regimen, I have noticed my erections are fuller and heavier. I have also noticed my morning erections have returned. Finally, I’ve noticed my penis is like a living organ again for the first time in a long time. By that I mean, when it is warm out it expands, my testicles hang again (rather than being tight like a pre-pubescent boy). The downside is I still feel no desire for sex. The thought of a naked female still does not arouse me. Given, my physical functions have improved, it is possible this is mental.

Good luck. My best advice is don’t dwell on the issue, take action. After reading a lot on PropeciaHelp and HairLossTalk.com, I thought I was doomed for life. I went and saw a $600/hr endocrinologist and made 5-visits to my urologist. I talked openly about my symptoms. At this point I have only treated the prostatitis, but there are other options available as well.

 

[swingline747]

I'd like to share my experience, and hopefully it can help people better understand the potential risk.

I began taking Propecia around the age of 23 or 24, about 8 years ago. I'm not sure anybody discussed the potential sexual side effects at the time, but if they did, my understanding is that I could stop them by quitting the drug. Initially, I had no side effects. I had a healthy sex life and everything was normal for a few years.

I occasionally heard reports of sexual side effects. But I shrugged these off. They weren't affecting me, and I figured the reports were from older men who were naturally losing their libido and erectile function and looking for a culprit. And again, I figured that if anything went wrong, I could stop the drug and go back to normal.

Around the age 29, my libido began to rapidly decline. I didn't notice it at first, but there were signs. I was single, and had a few one night stands around this time, and things didn't work as well as they should have. I just shrugged it off as too much alcohol or nerves. But as a few more months went by, I realized I no longer had the urge even to masturbate. When I occasionally forced myself to masturbate (out of habit or to make sure I still could), I could not get fully erect. At the risk of sharing too much information, it would get semi-erect, hang at 5 o'clock rather than 2 o'clock, and just be soft and sort of rubbery. I realized I no longer had spontaneous erections, even in the morning. I didn't make the connection to Propecia side effects right away. It had been a while since I heard anything about Propecia side effects, and they hadn't affected me before, so why now? When I randomly came across a magazine article about Propecia, and the description of the symptoms matched mine exactly, I quit the drug immediately.

That was about two years ago. The effects have have not improved much. I wake up occasionally to spontaneous erections, but they are not firm. I can have sex, but again, if I manage to get an erection at all it's not fully firm and honestly I doubt it's very satisfying for the other person. I reconnected with an ex-girlfriend around the time I quit, and we ended up sleeping together. She stopped me in the middle of the act and asked if everything was ok. It certainly wasn't the sex we used to have. I've since met a new girlfriend, and she hasn't said anything. This is the only way she's known me though.

I hoped everything would just work itself out, but there's been no sign of that. I spoke to a couple doctors, but they said my testosterone was in the range of normal (looking into it further, I found that my testosterone level is the average for an 80 year old man, and very low for for a man in his early thirties. Though, yes, it's technically in the range of normal for the entire population of men). They said stress could be causing this issue. The urologist also claimed my issues could not be related to my hormones because I have a beard.

The tough part for me is that there's no way to know for sure what caused this drastic and severe change in my body. It seems like many or most men have no symptoms at all. And for years I had no symptoms either. It makes me wonder if I'm just one of the few unlucky ones, or even if something else entirely caused this. Then again, my symptoms very closely fit the descriptions from men who have spoken up. And 20-30 year old men spontaneously and permanently losing their sexual function is not normal. I wonder how many men suffer these symptoms but refuse to speak up about it, because I can tell you from experience it's incredibly stressful and embarrassing to admit to.

I found hairlosstalk and propeciahelp only recently. And honestly, some of the side effects posts come across as a little kooky or paranoid. I heard a radio interview with Jenny McCarthy a while back, and she described how she could tell if she was sleeping with a guy on Propecia because his penis would be soft and rubbery. She'd ask the guy if he was on Propecia and he'd be amazed she could tell. I heard that and I said, "Yes! It's not just me." And then I said "****! It's Jenny McCarthy saying this. It couldn't be from a less reliable source."

All that said, based on my own personal experience, I firmly believe that Propecia presents a risk of severe and possibly permanent side effects that can destroy your sex life.

I seem to be in the minority, and maybe the calculated risk is worth it to you. But please be aware of the possibility and cognizant of changes in your body. Sorry for the novel.

You sound like me to a TEE. I actually called my Doctor TODAY cause Im getting my blood run again. When on finasteride my T levels went to 230 which my Doctor said was in the normal range. LUCKILY my Doctor I got the hair transplant from started a convo with me about finasteride and let me know "NO WAY" that is way low for someone like you. Im young and honestly he KEEPS asking me if I take steroids because its noticeable I work out and he wants to blame something other than finasteride for my sides I described.
After my hair transplant he prescribed me topical finasteride which Im still crazy scared to take but I said to prove my point and hopefully to the medical community Im getting my T and DHT measured NOW. and every month or so on the topical. Supposedly he is performing a study with the people who manufacture the topical and Im the first guinea pig.... YAY.

I gradually climbed back up naturally to 650 in my T levels but to me that is low to. I have a pretty nill libido to what I used to have a year + ago. Same thing whacking it, its like its doesnt get full blown anymore. Even sex is like hit or miss. Im just not as full down there. My balls are always sucked in and it drives me nuts (zing). My Doctor doesnt know anything about finasteride so he just reads charts. The urologist I saw WILL NOT speak ill of finasteride because "he still prescribes it". He said there is a portion of men who claim these side effects and the best path is stop and wait it out, awesome.
My hair transplant dock seems to be the most intrigued and helpful oddly.

Dude I wish you luck but heres what helped me

DHEA. Take the supplments along with what others say which is ZINC. People swear by ZINC but to me it did squat alone.

Take hot baths, use heat down there, and take DHEA. These are the ONLY things that help me along with an ibuprophen here and there. I think finasteride causes some issues with blood flow down there and the Ibu and heat get it flowing again. I personally think this is a prostatitus thing more than anything.

If you want PM me, maybe we can pin point some effective regimens, only because again you literally have my story and arent much younger than I

- - - Updated - - -

Your story is strikingly similar to mine. I started taking Propecia at 19. Stopped at 27. I just turned 29 this week and I have been off of it for 18 months. I quit after noticing a severe decline in my sex drive.

Have you had your prostate examined? For me, I had prostatitis. I treated that by using a 3-week antibiotic regimen with a “prostate massage” in the middle. The prostate massage was one of the most uncomfortable and painful experiences of my life, but apparently it released the bacteria out of my inflamed prostate. Since that regimen, I have noticed my erections are fuller and heavier. I have also noticed my morning erections have returned. Finally, I’ve noticed my penis is like a living organ again for the first time in a long time. By that I mean, when it is warm out it expands, my testicles hang again (rather than being tight like a pre-pubescent boy). The downside is I still feel no desire for sex. The thought of a naked female still does not arouse me. Given, my physical functions have improved, it is possible this is mental.

Good luck. My best advice is don’t dwell on the issue, take action. After reading a lot on PropeciaHelp and HairLossTalk.com, I thought I was doomed for life. I went and saw a $600/hr endocrinologist and made 5-visits to my urologist. I talked openly about my symptoms. At this point I have only treated the prostatitis, but there are other options available as well.

I also noticed anti biotics help me and have heard this prostate massage thing. Not to sound to weird or intrusive but is this a self applied thing or do you have to go get it done? Can it be done on your own....? and pray to god I hope I dont end up liking it more than getting my boners back lol.

 

[abcdefg]

The big issues with any drug or finasteride in this case. Are your problems from simply getting older or from the drug? I can you tell for a fact nothing in life in constant so enjoy it while you got it because none of us have any guarantee for the future. Getting older could be part of it or all of it and there will never be any way to pick those apart aside from guessing

 

[swingline747]

The big issues with any drug or finasteride in this case. Are your problems from simply getting older or from the drug? I can you tell for a fact nothing in life in constant so enjoy it while you got it because none of us have any guarantee for the future. Getting older could be part of it or all of it and there will never be any way to pick those apart aside from guessing

The difference for me was it wasn't gradual but instant. I started finasteride and I could tell things were changing. For the better at first but then bam. I tested to check if it was the drug. On and off 3 times with the same results each time off the sides becoming more permanent

 

[sumitdhawan]

Didn't read the whole thread, so it might already be mentioned but let me get this straight:

You were fine for years on finasteride. Then your libido or whatever goes wonky, and you decide its propecia, you quit and its still wonky. This leads you to believe it was finasteride?

Am I the only one seeing this?

 

[swingline747]

Didn't read the whole thread, so it might already be mentioned but let me get this straight:

You were fine for years on finasteride. Then your libido or whatever goes wonky, and you decide its propecia, you quit and its still wonky. This leads you to believe it was finasteride?

Am I the only one seeing this?

I will believe him. I was on finasteride for 8 months. In the first few months my T levels must have sky rocket from roaming T and I could not keep boners down, was always horny, it really seemed my junk was like swelled and plump ALL the time. Then overnight it all crashed at like 7 months. MY junk was shrunken all the time, I could not get erections unless I REALLY tried, I had no libido, I had awful groin pain, and symptoms like prostitis. I got all my blood work done and came back clean. I got a urine test and clean. I dropped the finasteride and after about 2 weeks I bounced back. I questioned whether it was Telogen Effluvium finasteride and tried again. After a couple doses again, groin pain, mushroom penis, burning tip, etc. I stopped and waited even longer dropping all my vitimans and meds to fully clean myself out. I decided after about 2 months to try one more and took a couple doses a couple days apart to lessen the dose. Did not help and that last time pushed me too far.
There is no other reason my T levels dropped so drastically and once fully stopping finasteride they came back.

The stuff is great for some but horrid for others. I think they should stop its sale until they can think of a test to whether you will have bad sides. Me personally I think if your a high T and high DHT then taking finasteride stops the DHT conversion that your body needs. Then on top of that you end up with more free roaming T which is like taking roids. Eventually you have a body roid crash and then by screwing with your prostate you end up with chronic prostisitis on top of the roid crash. Just a theory but from my symptoms thats how it sounds.

 

[badbeat2]

[/QUOTE]I also noticed anti biotics help me and have heard this prostate massage thing. Not to sound to weird or intrusive but is this a self applied thing or do you have to go get it done? Can it be done on your own....? and pray to god I hope I dont end up liking it more than getting my boners back lol.[/QUOTE]

The prostate massage was performed by my urologist after I was on antibiotics for 2-weeks. It was the most painful/uncomfortable experience I can remember having. He was putting pressure on my prostate in hopes that the bacteria would distill from it. He claimed both of my lobes released during the thirty second procedure. I felt like crap the rest of the day as he released a bunch of bacteria into my body, but felt like a new person the next day. For the first time in a few months I could bend over and tie my shoes without pain.