Off for 5 yrs still have sides - My story

  1. Where are you from (country)?

USA

  1. 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 “Propecia side effects”

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

Age 30, 5’11" 155 lbs

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

Monday-Friday for 2-3 hrs, because my job is exercise (unloading semi trailers by hand) also occasionally play soccer

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

I eat everything but do eat more fast food than I should

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

Started going bald on my temples (receding hairline)

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

Between 9-11 months cant remember exactly

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

Age 25, started taking it around May or June of 2005

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

Age 25, quit around January/February of 2006

  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.)?

1mg daily

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

A few months

  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
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[x] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Depression / Melancholy

Physical
[x] 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
[x] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[x] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[x] Frequent urination
[ ] Lowered body temperature

[x] Other (please explain)
[x] Dribbling after urinating

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

Have tried a few of the natural supplements people have suggested on here, DIM, Green Tea Extract, Quercetin to little/no effect

  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)?

Haven’t got blood tests done yet but should have them soon

  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.

I started losing my hair in the front on the sides when I was probably around 21, but it didnt become that noticeable until I was around 24-25 to where I started becoming a little insecure about it. Found out about propecia when I looked up hair loss on google, and figured if I could take a pill and keep my hair or at least slow down the loss of it, why not. I believed the “only 2% had side effects” and that the side effects stop on cessation of taking the drug BS from Merck. Started taking 1mg daily and don’t remember noticing anything much different, although I did stop having morning wood and spontaneous erections but its weird because its almost like I didn’t even take that much notice, I didn’t feel anything close to like I do now, I figured I would still be able to perform fine if the occasion came up.

I used to look at porn or play video games with my roomates and stuff like that but once I started propecia I started feeling way more motivated to do constructive things instead, I started working out everyday lifting weights and got pretty bulked out, I was in the best shape of my life, and felt way more confident than I ever had been. Usually I would avoid confrontations before but now I felt like I could stand up to anybody that messed with me and throw down with them, before I never felt like that, I used to get picked on a lot coming up and would just take it. At the time I didn’t think propecia had anything to do with that, I just thought it was because I started lifting weights, but after reading stuff on here I think the propecia maybe boosted my testosterone levels. My roomates also said I was being way more aggressive and agitated about stuff. But to me it just seemed like I was finally standing up for myself and calling them out on stuff that would piss me off. Like coming home from the bar at 2 AM being all loud and me getting woke up.

The main side effect that I actually felt and noticed and attributed to the drug though at the actual time I was taking it, was after a few months when I would take a piss, it didnt feel the same when I was “done” and there would still be piss dribbling out my dick. Like my bladder wasnt completely emptying or something. Even after I started noticing it I still kept taking the drug for probably another month or two because the hair loss forums that I was going to said you need to take it for a full year to know whether its working for you or not, so I tried to continue taking it, but the piss leakage got worse and worse to the point where I couldn’t take it anymore (take a piss and then pull up my pants and feel a bunch of piss leak out) so I just quit taking it cold turkey at that point, I figured once I stopped taking it that everything would return to normal.

Also as far as sexual sides while I was on it, I started seeing this girl after we met at a party and the first time we messed around she gave me a hand job and I came super quick, like immediately. That had never happened to me before when I was with a girl. Before I could hold it, now it felt like I didnt have any control over it. My dick wasn’t as hard as it used to be also. But later when we had sex a couple times I wasnt that into it. Almost the opposite effect. Before just having a girl there naked next to me my dick would be ROCK hard. Like way harder than it would be looking at porn. I was able to have sex and everything but it definitely wasn’t the same as it was before, my dick didn’t feel as hard and I couldn’t really feel it, couldn’t even really feel how tight she was or anything. That was the first time I really realized that it was messing with me sexually, this was probably 3 months before I quit taking it.

Another side effect that I didn’t realize was from propecia at the time was a couple times when I was at work, I couldn’t remember the name of people that I work with, and I work with them everyday, and theres only 3 other people I work with. I would eventually remember but it was like when you first meet somebody and you forget their name, and it takes you a while to remember, it was like that, when it should have just been immediate. I thought it was weird at the time but I never attributed it to the propecia until way later on this site when I was reading about “brain fog”, and that totally clicks, I also felt the difficulty putting my thoughts into words sometimes too. This went away after I stopped taking it though and only happened a few times while I was on it.

Maybe a week or two after I stopped taking it, one day I got super horny for no apparent reason, and went and looked up porn for the first time in forever. It was weird too because I hadn’t felt that way the entire time I was on it, even when I messed around with that girl that “horny” feeling wasn’t really there. That day was the last time I have had that feeling. Ever since then I barely ever get morning erections and when I do theyre usually not even that hard and go away pretty quick. Same thing with nocturnal erections, and spontaneous. On the rare occasion that I do get a spontaneous one it feels like its a super slowed response and just gets maybe like 15-20% hardness. Before it would get super hard like right away. If I look at porn, somedays it will get close to fully erect without touching it, but then other days it wont get hard at all unless I give it a lot of manual stimulation.

Also there seems to be no in-between stage, like my dick gets hard looking at porn, but it wont stay hard unless I constantly mess with it, and the only way it gets all the way hard is if I get it to where I feel like I’m just about to come, then back off, then it will start to get limp again. Before when I would look at porn or have sex there was like an in-between stage where my dick would just be hard, on its own, and there would be precum during that stage too, which is also absent now. Now its just like I can make myself come or I can just stop and have my dick go limp. Also when I do orgasm it just feels like a “biological event” now, it just has this emptiness to it.

I messed with one girl since I stopped taking it and it was pretty much a disaster, she started giving me a BJ and I felt like I was going to come right away and had to pull her off me. She got on top of me and it was pretty much the same thing, felt like I was going to come super easy even though I couldnt really feel anything and my dick was only semihard. Also no horniness or pleasurable feeling (she came on to me and I was trying to accommodate her as much as possible) and that same no “dick hard on its own” stage.

Anyways to summarize the side effects I still have 5 yrs since quitting

  • ZERO sex drive, never feel horny
  • Decreased penile/scrotum/testicle size
  • Dick feels disconnected
  • No morning/spontaneous/nocturnal erections (do get them sometimes but very rarely)
  • Dick is always tiny (doesnt change throughout day)
  • Balls also hanging low most of the time
  • Premature ejaculation/Erectile disfunction
  • Still have leakage after pissing
  • Constipation (dont know if its fin related though)

Hi fin 2005

Have you had any help from doctors since quitting?
i can relate to never feeling horny on the drug, funny thing is though on my last bout I was jerking a lot right up until the end, even if requiring porn to do so. Then when I stopped it’s like any desire was wiped straight out of my brain…

Hadn’t went to a doctor as I didn’t feel like getting the run around like so many on here have posted about. I hadn’t signed up for an account here until now either, but over the last couple years I’ve come on every few months to read peoples posts and see if any progress had been made in finding a cure. Saw the info about Dr. Jacobs on the front page and decided to setup an appt with him over the phone. He’s sending me to get blood tests to be done. So hopefully I’ll know where I’m at once that takes place and hopefully I can do something.

I can still watch porn and get a boner usually but its like I don’t have the urge to, its more like I do it just to make sure I still can. I don’t know if looking at porn and getting a boner counts as a spontaneous erection? Because just throughout the day I don’t get any.

Make sure you get a full thyroid panel done.

TSH
Free T3
Free T4
Reverse T3

Fin2005,

Do something to help yourself and others. Get a blood done as soon as possible. Be sure to include as many hormones as possible and definitely include the Thyoid hormones that Annon mentioned.

I never signed up for an account before because I didn’t feel like I had anything constructive to add. Now that I have an account I will definitely keep everyone updated. I did a phone consultation with Dr. Jacobs and he is sending me orders for lab tests but I’m not sure what all he put on there. The only thing I remember him saying was one for bioavailble testosterone and I asked if thats the same as free T but he said it wasnt and described what the difference was, but to tell the truth a lot of this stuff is just way over my head. Anyways as soon as I get the letter in the mail I’ll post what tests he put on there and am planning on going to get them done ASAP. I also told him my insurance will pay 90% so if there were any tests he thought might not be needed to go ahead and put them on there too. He said these initial tests were just to get a picture of where I am and that he might order more depending what these come back with.

Fin2005,

Please keep us posted. I will be interested to see what he recommends for helping you recover. His article that is listed on the main webpage here, indicates he believes high levels of Testosterone replacement and an Estrogen blocker are one method he mentions.

This what many of us have been unwilling to comit to. A life long use of TRT or ANdrogel.

I got the bloodwork order in the mail today, I’m planning on going in this weekend to get the blood drawn.
Here is whats listed on the order:

  • Bioavailable Testosterone
  • LH
  • DHEA-S
  • DHT
  • FSH
  • Cortisol
  • IGF-1
  • Ultrasensitive estradiol
  • 3-Alpha Andro Stane Glucoronide ? (illegible)
  • 17-OH-Progesterone

Free T3, Reverse T3, TSH, and Free T4 is very important…Can’t stress this enough…

I’ll see if he will add those :confused: What about Vitamin D and Liver Function, should I get those done at the same time too?

fin2005,

Sure I would add the vit D. The more you can add on the test the better.

I hate to admit it, but when I see guy’s like you come on here after being off of this crap for 5 years and still have sides it scares the hell out of me. I just feel like we need to get as many guys as we can to be agressively seeking out medical care.

There are almost 1400 members on this site. It seems as though only a small percentage of guys frequent the site, but there are only a handful of recovery stories. There are also hundreds of vistors frequenting the site that haven’t joined. The bottom line is guys are just ignoring the problem and not seeking out care.

That’s why when I see a new guy join the site, I try get them to participate. The more of us that seek out doctors, the more likely it is that the medical commmunity will consider this a wide spread problem. So, be persistent with the doctors visits and blood tests.

Just a small update…got an e-mail from Dr. Jacobs today saying my bloodwork results came in. “3 alpha-androstanediol is quite low and am cortisol is mildly elevated.” So he’s sending me back for a 3a-diol level test and a 24 hr. urine free cortisol. Will keep you guys posted.

Your the first guy I have ever seen on this website that had a doctor suggest 3adiol test. Good to see a competent doctor know enough to suggest this.

twas the infamous jacobs himself - who is treating a ton of guys worldwide now (apparently)

Anyone know if 3-alpha Androstanediol is able to be tested for? On the Quest website I’m only seeing one for 3-alpha Androstanediol Glucoronide, which is the one I already had done. But he sent me an order for just 3a-diol to be tested.

call quest and ask.

Hmm…called up and asked, put me on hold while they contacted the lab, came back and said that test used to be offered but has been discontinued. Has anyone had this tested or know a lab that can do it?

maybe labcorp?

or maybe ur doc got them confused and wants gluconoride - ask what the diff is for him.

My endo goes through quest for labs and told me they did not offer this test.