Same Song, Different Verse (My Story)

Member Stories
#1
  1. Where are you from (country)?

United States

  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?)

Can’t remember exact search terms. Just decided to google Propecia and sexual dysfunction soon after crashing, hoping that I wasn’t alone with these side effects

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

25, 5’11", 140 lbs

3) Do you excercise regularly? If so, what type of excercise?

I’m attending school 5 days a week, so I get regular walking around a very large campus. I also still play basketball one day a week (down from 2 or 3 days a week), which has become more difficult with joint pain. I sprained both ankles within about 3 months of stopping Prop. I also have plenty of joint popping.

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

I definitely eat less now than I did during finasteride and pre-finasteride, but my diet has mostly remained the same. I don’t eat particularly healthy, and I don’t eat completely terrible. I do still eat fast food. Try to get some fruits and vegetables, though I’m not even that disciplined with that aspect of my diet.

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

hair loss

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

roughly 2 years

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

I was 22 when I started (~January 2009)

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

I was 24 when I quit (January 2011)

  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 mg) for about 18 months and generic (1.1 mg I believe) for 6 months before quitting

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

see above

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

[b]It was at roughly the two year mark that I noticed what looked like a slightly protruding vein on the side of my penis, and some very slight pain in that area. I saw a urologist who laughed at the idea of me taking finasteride for hair loss as he obviously knew of its original use (BPH), which he prescribed it for all the time. He shared with me the nice little tidbit about male genitalia in a developing child not forming correctly in pregnant women exposed to tablets, and suggested I stop taking it.

At that point I figured it was worth a shot to save what could potentially happen to my libido/genitalia by continuing use of the drug. Looking back however, terrible anxiety came out of left field while I was taking Propecia (to the point of panic attacks), and I wish I had considered that it was a possible side effect of the drug. I really can’t say that I noticed any significant changes in my libido while on the drug (there were probably some minor ups and downs). That all came afterwards. [/b]

  1. What side effects did you experience while on the drug that have yet to resolve since discontinuation?

***Just about every one of the side effects that I have "X"ed occurred after stopping my final dose of Propecia.

Put an X beside all that apply:

Sexual
[X] Loss of Libido / Sex Drive
[X] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[X] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[X] Watery Ejaculate
[X] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[? should have had this checked] Reduced Sperm Count / Motility

Mental
[X] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[X] Confusion
[X] Memory Loss / Forgetfullness
[X] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[X] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[X] 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
[X] Weight Gain
[ ] Gynecomastia (male breasts)
[X] Muscle Wastage
[X] Muscle Weakness
[X] Joint Pain
[ ] Dry / Dark Circles under eyes

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

I have not done much in the way of treatment. It’s partly that I lack the time (still working 20 hrs a week and inching my way through school) and money. I also have read about too many supplements/treatments that sound promising, and then right as I consider ordering/attempting them, someone comments on their horrific relapses due to them and it easily deters me. I semi-regularly take fish oil/a multivitamin/vitamin D3. Tried horny goat weed (for kicks) only a few times. It helped a little, once or twice, and then tapered off in effectiveness. I tried maca root without any luck. I attempted to get back into weightlifting, which (at least early on after crashing), really pushed my brain into further funk. I will admit I should be doing more, I’m just not exactly certain as to what.

  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)?

While I did see several doctors/endos/urologists after initially crashing, they only did a very basic blood panel (thyroid, testosterone, etc.) and said everything looked fine. I have since lost insurance (but should get it soon) and plan to go back and have some more extensive blood tests done. I am also curious to know if those levels have changed at all since those visits, some 6 or so months ago. Had a 10 minute courtesy call with Dr. Goldstein, who emailed me his treatment protocol, but I do not have the time/money to fly out and see him. That, and I remain very skeptical as to what improvements I would actually see, even for a hefty sum of money.

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

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

[b]I don’t know how typical my crash is, but I found it odd that I stopped in January of last year, and probably didn’t crash (penis/testicles shrunk, was mostly impotent, brain fog set in) until about late April or early May. I sprained my ankle and fractured my wrist just around the time I was crashing, so I had to come to the realization that my penis was broken while I was hobbling around with a crutch and walking boot for my left ankle, and a splint on my right wrist.

Sitting down in the shower (because I could not stand) and using one arm to do all the scrubbing while looking down at a broken pecker was an incredibly depressing way of coming to terms with my new situation. While the shaft of my penis shrunk at exactly the same time I lost my libido, it wasn’t until 6 or 7 months later that the head of my penis shrunk along with the shaft. What the hell is that?

For about 4 or 5 months after the very severe onslaught of sexual side effects, my libido actually got to be somewhat variable. I could be completely unphased by watching pornography, but around my girlfriend I could just touch her and still get an instant erection. Granted it wouldn’t last anywhere near as long as it did before, and once it disappeared it was more difficult to reattain. This ability has dwindled a bit in the past few months (she has stuck with me through this) but I do still have my ups and downs.

I am able to get (softer) erections from watching pornography (not always), and I am still able to achieve erections around her (not always), but it is the desire and the mental excitement that seems to have left me almost completely. It’s no longer something I think about or look forward to, but rather something that I force. Whereas sneaking off to masturbate while on Prop. and before Prop. used to be somewhat of an obsession (I never had a problem, I just loved it… like every other guy on the planet).

However, even though it was very frustrating hearing doctors tell me that it was anxiety and depression keeping me from experiencing or enjoying these things, I do give more truth now to performance anxiety making my situation worse. I have definitely convinced myself that I’m mostly broken, and so I expect very little when attempting to masturbate or trying to enjoy some “intimate” moment with my girlfriend. We are not having sex. Luckily she is okay with it (for whatever reason).

While I am very rarely able to recall dreams (which I must not get much anymore), I do find it strange that morning erections are something that have not left me. Even after I felt almost impotent just after crashing, I could still wake up the next morning with an erection, and still usually do. The exception to this is masturbating the previous night. If I do wake up to anything, it’s a lot more tame.

The onset of brain fog might not have coincided my initial crash, but it definitely popped up shortly after, accompanied by severe depression. My brain fog was very thick, and it seemed as though any time I chose to masturbate it would exacerbate the situation, as well as add to my joint pain. I’m definitely still depressed and suffer from brain fog, but I must say I have been able to joke around more and think a bit more clearly in the last month or so. I feel like I’m maybe already experiencing some relief in those areas.

As I stated earlier, I had very extreme anxiety that seemed to be the only really noticeable side effect while on Propecia (I wish I had realized it was a side effect at the time, as I may have quit sooner), but since stopping, my anxiety has almost completely disappeared. I used Lorazepam every once in awhile at night while on Propecia because I absolutely couldn’t clear my mind of worries/concerns and it would always throw me into bad breathing patterns or cause some heart paliptations.

Towards the end of my Propecia usage (when my anxiety was the worst), I probably had more restless nights than I do post-Propecia. My sleep now is still suspect, and I’m guessing my activities tend to dictate my sleep more than I realize. I don’t work out much anymore, as I think that probably contributed to poor sleep. However, even my sleep seems to be improving too. I fall asleep fairly quickly, and seem to be able to sleep more hours at a time before waking up than after my initial crash.

Like a lot of guys on here, working out vigorously (weights or cardio) shrinks my penis to childlike proportions and leaves it feeling very cold. I’m not sure why urinating also causes my penis to shrink. Even if it’s hanging “nicely” (which isn’t all that often), it will be very tiny after emptying my bladder. Any ideas? Anyone with similar experience?

The consistency of my semen is very rarely watery, as I usually see it described as on the website. Instead it is more easily described as stringy. I’ve honestly ejaculated and seen nearly all of it come out as one long, gooey strand. That’s pretty disgusting, sorry. But can anyone relate?

I’m sure there are some other obvious symptoms I should include, but at the moment I cannot think of them. As I have said, I definitely have my ups and downs, and except for any leaps and bounds in the sexual department, I do feel like my quality of life has been improving gradually. It has been just about a year since I stopped the drug, and about 8 or 9 months since actually crashing, but that seems like a horror story when I compared to the way things are now.

Maybe I’m just accepting my situation better than some guys on this forum, which isn’t necessarily a good thing. I do still cling to some hope of seeing more improvements in time (both naturally and with the increasing awareness/research), but I also suppose I could be more proactive in my quest for the restoration of my health.

I am obviously impacted emotionally (as in I am rather dulled), and sometimes I feel unable to really put into perspective the magnitude of my/our losses, so that maybe helps me from breaking down constantly.

Anyways… I might update this post if anything substantial comes to mind. I can’t imagine much of this is out of the ordinary, so there probably won’t be many questions. But if you have any, I’d be happy to answer them. (Well, I’ll be as happy as I can be, given PFS.) Thanks for reading.
[/b]

#2

The morning erections. Are we talking full on ‘press down to piss’ erection or just some hardness upon awakening?

The one time i got proper morning erections back that don’t go down until you take a piss in the morning, i felt great all round.

#3

Well, I don’t often go straight to the bathroom, but some mornings I would say I would have to press down (they really can be that hard). I’m not sure why going from lying on my back to standing can kill them rather quickly though.

#4

its because your body doesnt have the strength to keep blood trapped in your penis…and doesnt have the mental stimulation either, your body is in lockdown , because your immune system is trying to fight whatever is going on within you.

#5

Donkeyboy,
I have the same thing. Rock hard morning erection just like pre-fin but they go away once I get up, I feel totally normal once I wake up in the morning then it all goes away.

#6

Yet another example of why it’s hard for me to get out of bed in the morning.

#7

I can mostly relate to the sexual situation that you describe: Strange symptoms (shrinkage, etc.), poor to average “performance” in masturbation, but usually acceptable performance with a girl. I didn’t do any statistics but this seems to be quite common around here, and is definitely similar to my situation in the sex department.

I really believe that you can’t underestimate the power of your psychological situation over this. You’re lucky to have a girlfriend. In the time when I had a partner and regular sex, I’m pretty sure that I’ve seen a gradual improvement.

Do you have anyone to talk to about this (other than your GF)? I’ve found this to be one of the hardest aspects of this situation, but when I did go to a psychologist with whom I could discuss this openly, I also found that it would help.

#8

I had a really good therapist who worked less than a mile from where I live. He really pitied me (to the point to where he wasn’t charging me for visits because he knew how dire my situation was at the time), but I also knew it was a tough situation for him. There was only so much help he could offer me. But even still it’s very comforting being able to talk to someone. I really found it to be an emotional release, freeing my mind up a bit on the days I would see him. I’ll probably go back and see him again as soon as I get health insurance back. And you’re right, like so many others have said on the forum already, it’s insanely difficult being a changed person and not being able to share with close friends why you’ve changed so drastically. I’ve come very close, many a time, but always decide against it.

#9

I know testosterone is highest in the morning, so why by the end of the day do I feel so much better (physically and mentally)? I stay up very late, so I see most of my relief late at night or early morning. I feel like the one thing sleep does is it always makes me feel worse. I can go to bed feeling somewhat alive, and upon waking my brain has always gone to shit. This has been a consistent thing for months and months. It really makes me wonder if it isn’t 90% hormones that dictate the mental side effects. In fact, in thinking back at my recovery periods, they all seem to be during periods of very little sleep. Can anyone relate or provide any insight? I just know there is a pattern here and wonder what it means.

#10

Just to mention a few tactics that have been life savers for me lately. I know most of these are well known, and some strategies work best for certain people, but I’d like to emphasize these, as last week and even now I feel much better. I think the benefit of daily (cardio) exercise cannot be overemphasized. Get out and run, do what you feel comfortable with. Weights can sometimes have the opposite effect on me… maybe it ups my testosterone levels too quickly and shocks my system? Either way, I got out and ran/exercised every day last week. I spent the weekend out of town with my girlfriend after running and playing basketball during the week. Sure I don’t have the energy levels I used to, but my joints have strengthened a lot over the last year and a half since quitting Propecia, and I am able to get out and compete. I’ve even started playing pickup games with guys I have no business playing with. Some of them run circles around me, but I don’t care… I’m trying to build energy levels back up. It’s really satisfying anyways. Even while staying at my gf’s place, I jogged a trail behind her apartment whenever I started to feel my mood slipping. I capped one night off with a nice dinner outing and a single glass of red wine, which sent me into the best mental state I’ve been in in months. It even carried over to the next day. I know the alcohol strategy isn’t foolproof, but every time I have seen its benefits, it has been by drinking only a small amount (a single glass) after a week of regular physical activity. It’s as if the alcohol somehow successfully converts all the built up energy from the week into useful mental energy, and often times, libido. Coincidentally, or not, those nights were the fewest hours I have allowed myself to sleep. Which brings me to another point. I think (at least for me) that 6+ hours of sleep, or staying in bed too long, makes my day much worse. If I allow myself to only get a few (3-5) hours of sleep, my mood during the day can be quite good. At the end of my stay last weekend, I had a sexual encounter that sent me tailspinning a bit. It actually didn’t make it to a full-on sexual encounter… just some fooling around. And this is my last point. Overdoing masturbation and sexual activity only worsens things for me. I do seem to feel a high shortly afterwards, and I’ve even had some of my best days in the last year and a half after a night that involved an orgasm, but lately it has been the opposite. I certainly wish this was not the case, but it makes me want to shy away from any sexual activity… and when I have some libido, it sucks. The patterns are not always clear.

As I said, none of this advice is really new… except for the sleep. I haven’t seen anyone mention undersleeping being helpful. I certainly oversleep some days, but I find that the more I stay in bed, or the more I hit the snooze button to get back to sleep, it seems to negatively impact my mood during the course of the day. I’m mostly just rambling, but these things have made life 10 times better lately. Hopefully someone finds this useful.

On another note, I did start using Doxylamine (25mg) during that week, as I have seen others speaking of its benefits. I would have to say it definitely allowed me to see some deeper sleep, so maybe it helped me out during those days as well.

#11

It’s really amazing how often I think I have some patterns figured out, only to learn I don’t know what the hell I’m talking about. I think all of those things I mentioned in my last post might be working against me now. I really worry that my mind is deteriorating at a rapid pace. This sort of out of body experience that I would usually only feel ever so often has gotten much worse lately. Things are very hazy.

I find myself obsessing too much these days… convincing myself that everything I’m feeling is getting worse. I’ve always been a chronic worrier, but this shit has been swirling around in my head morning to night, only periodically abated by short-lived distractions. I have started Wellbutrin, after months of pleading by my family, and my own curiosity about whether I can kill off some of my depression, and at least eliminate some of this sadness. Five days in and I’m as depressed, cloudy, listless, hopeless as I’ve been in months. Up until recently, I actually felt like I was a lot better off than so many people on here mentally, and lately I feel like my brain is leaking right out of my skull. I sometimes go back to my benzo (1 mg Lorazepam), as it is always the one thing that reliably kills these awful thoughts in my head, but the next day, it sort of kills everything else too. My disconnect with reality tends to grow. I always worry about the effects and withdrawls of benzos in combination with PFS (even in short term use), so I don’t usually take more than one every couple months, but even that one tends to set me back. It’s like I down every type of pill with regret and worry nowadays, because I just don’t know what they’re doing to me. I have not taken the Lorazepam in a few weeks though, and I have certainly not taken it while on the Wellbutrin, but wouldn’t you know my anxiety is up too. I have just been suffering through some nearly full-blown panic attacks.

I haven’t been sleeping that well lately either, even though I liked the Doxylamine that I took for about a week. I am just always trying things and stopping them, out of fear of the long term consequences. So indecisive now… and I’m a mess, and I’m rambling. Don’t know what to do…

#12

be very, very careful with wellbutrin … you know the drill man, i know your family thinks it will help, but be careful!

#13

D.B. be extremely careful with Lorazepam or any Benzo. For most people, if you take them for as few as 5 successive days tolerance withdrawal and dependence sets in. I got into a bind with them innocently in the past and was up for three days straight (i mean not one second of sleep).
If you search benzo addiction you’ll see some hellish accounts online.

#14

I know they can spell trouble. I keep thinking back to how much I was using them while I was on Propecia when my anxiety got bad, and how much I used them during my crash when anxiety was worse, and I worry that I’ve like permanently altered my brain chemistry further than Propecia was capable of doing. However, the worst part is when my anxiety spirals out of control now, they’re the only thing that can ground me. It’s such a vicious cycle, and I hate it. I’ve mostly kicked them, but I just don’t have control of my brain sometimes. It has control over me. I was wired this way unfortunately. Got it from my mom. Anyone have some other alternatives to benzos that help take the edge off of anxiety? Most of the sleep meds only make me groggy. They don’t ease my mind.

#15

Is there anything encouraging about waking up with erections or near erections most days of the week? Even 1 and 1/2 years after a crash? I mean I guess it’s not a bad thing… I just don’t know what can be made of that.

#16

My old psychologist did for years. Sadly he passed away. Any anxiety eased by a pill, invariably you’ll have to ‘pay back’ in one way or another, I believe.

#17

Eucommia has reduced my anxiety and made me sleep like a baby. Take it with some melatonin before bed time.

#18

I really worry that Lorazepam did me in (mentally). During my crash I was taking it once a night for sleep (only 1 mg). I probably took it for a month or so, off and on, and then maybe a total of 15 times in the next year when I was having trouble sleeping. I just read about its side effects on Wikipedia…

“Long-term effects of benzodiazepines include tolerance, dependence, a benzodiazepine withdrawal syndrome, red eye, and cognitive impairments which may not completely reverse after cessation of treatment; however, for most patients, cognitive impairment is not severe. Withdrawal symptoms can range from anxiety and insomnia to seizures and psychosis. Due to tolerance and dependence, lorazepam is recommended for short-term use, up to two to four weeks only. Adverse effects, including anterograde amnesia, depression and paradoxical effects such as excitement or worsening of seizures, may occur.”

A part of me hopes that most of my mental side effects are Propecia-induced, but I guess it’s just impossible to know.

Does anyone here have experience with benzos and have bad mental sides?

#19

how are you finding the welbutrin??? i recently tried it myself for around six weeks to see if it would give my sex drive a kick and lift my depression,first week i felt nothing,second week depression and chronic fatigue dissapeared,i felt energised again like i wanted to do stuff all the time etc,as for the stories of it giving your libido a lift i did notice i had a fuller dick than usual when trying to masturbate and got a small orgasm when i come instead of the usual nothing,the downside of it was bad heartburn at first which soon went away,some mild insomnia,some anxiety and terrible feelings of anger and really painful headaches,for those reasons i had to stop taking it…

#20

I am slowly in the process of weening myself off of Wellbutrin. I guess I have taken it for about a month now, and I feel it helped me out a bit in the same ways you mentioned, but its effect has started wearing off. I am just too fearful of upping the dose to try and sustain some benefits. As others have said, it helped me cope some, but it didn’t fix all of my mental issues, and I worry too much about side effects of any medication now. That, and as bad as it may sound, I still enjoy drinking from time to time, and drinking with Wellbutrin was an awful experience.