My Story - 21 and dealing with side effects

Member Stories
#1

Hello everyone

I’m going to give my story and I’m hoping some of you can offer advice on what I should do.

I’m 21 and I’ve been dealing with these effects for a little over two years now. I came upon this site after taking Propecia for the second time, in August of 2007. I immediately stopped taking it after a day or two shy of a week.

My story began in September or October of 2005 when I first noticed I was beginning to have hair loss, and so unwilling to accept that the medical industry had no solution for MPB, I accepted finasteride treatment under doctor supervision. As far as many, even my doctor knew, I had nothing to lose and might as well at least try it. My doctor reassured me that it was safe and there was really no risk in taking it as it would/could not really cause permanent side-effects, and that the very small percentage of men who did experience some side-effects from it were back to normal in a few months.

Much to my surprise, after a bit more than one week, I was devastated by the side effects and horrified that I couldn’t feel my member. The sensations were very reduced and I felt like it was disconnected and numb. I knew it was the Propecia/finasteride I was taking, and stopped my dosage. I told my doctor about this and he figured it would be alright and that I would return to normal soon thereafter, and I did recover, but it took a little over one month and I wasn’t really the same. I felt more stress and became a bit depressed, while my erections were not as strong as they naturally used to be, they at least came back 75 - 80%. Still, I probably couldn’t have been very sexually active because of the side effects.

Fast forward a year, and I’d still hardly grown out of my depressed state, and my sexual dysfunction was still pretty apparent despite having not taken Propecia for over a year. Brain fog stuck with me. I really didn’t think that Propecia was the cause of it all, and instead felt that maybe I had over-reacted to the symptoms myself. An important part of what I was told about the drug was that experiencing some side effects could happen but to still keep taking it, because it would soon go away and I’d return to normal, allowing my body to get used to the medication. I figured I had not allowed myself to do that and asked, in retrospect - foolishly, to try Propecia a second time later in 2007, expecting I would find that my side-effects were just the bumps on the road to taking the drug successfully.

However, a week into taking Propecia I had similar side-effects as the first time, but pretty heightened. I had no sexual interest or capacity at all and my penis shrunk. Also, the brain fog that I’d felt ever since taking Propecia the first time was increased a bit, and I felt incapable of dealing with any sort of stress. While on the drug, I found this website somehow, and was shocked enough to stop taking Propecia for a second time, feeling it to be a toxic thing I needed to stop.

I’ve been off Propecia for six months now, and I hardly have erections and am not very easily stimulated sexually. I’ve gained some weight and have a slightly bloated stomach, and I find fundamental thought processes a bit hard. I’ve also noticed that I feel like I have muscle atrophy.

Now, here comes the “fun” part… Now that I knew that Propecia and its side-effects were more than what the drug company told people and that quite a few users were feeling this way, I had to tell my Doctor about my additional side effects. When I did so, he was (and is) very understanding and interested, but checked me out and said I seemed alright, and needed to go to a Urologist to have my sexual dysfunction examined. He did do a simple blood test checking my testosterone and said it came back normal. So, last week I had my appointment with the Urologist and told him that my penis had shrunken and my libido diminished, and so he has taken my blood to check on hormones, my urine, and also physically examined me, only to say that my genitalia seemed alright and normal. That was the most problematic part of it all because I know it is not, and I was upset when he said otherwise.

Anyways, I’m waiting for my results for the tests he ran and I don’t know where to go from there, because my genitalia is one of the biggest problems here as its shrunken and doesn’t seem to work. This affects me in a big way psychologically because I can hardly get any enjoyment out of life if I don’t really feel anything down there, and my body suffers.

When I get my results from the Urologist, what do you all suggest I do from there? I’ve heard talk of “dopplers” or something like that? I’m at a loss and don’t know how I should proceed, so I could definitely use advice.

Thanks in advance and sorry my story was so long

  1. How did you find this forum?
    By searching for info about Propecia’s side effects upon taking it a second time.

  2. What is your current age, height, weight?
    21, 5’ 8’’, 147 lbs.

  3. Do you excercise regularly? If so, what type of excercise?
    I don’t daily, but I will do basic exercises and work with a 25 lb. dumbell at least 3 times a week.

  4. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    I usually have meat at least once per day.

  5. Why did you take Finasteride (hair loss, BPH, other)?
    Male-pattern baldness

  6. For how long did you take Finasteride (weeks/months/years)?
    both times it was just under one week.

  7. How old were you when you started Finasteride?
    19

  8. How old were you when you quit?
    19 the first time, 20 the second time.

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

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

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

  12. How long into your use of Finasteride did you notice the onset of side effects?
    It was about one or two days into the treatment.

  13. What side effects did you experience while on the drug that have yet to resolve since discontinuation?
    Chronic fatigue/weakness, ED, Penile shrinkage, brain fog, muscle wastage.

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
[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
[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
[x] 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
[x] Dry / Dark Circles under eyes

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

[ ] Other (please explain)

(** only selected due to bloated stomach)

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    None.

  2. 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)?
    Low testosterone levels.

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?
    Propecia should be noted to produce dissociative characteristics. This drug has induced difficulty in my ability to present myself correctly. I don’t know why doctors have no knowledge or interest in this life-damaging nightmare, but the reason for these permanent effects must be found.

#2

hello 3pm,

it’s all crap what propecia can do, but hang on, we will find a solution, especially if we keep connected together and find each on our side the way to get better.

one thing interesting you said is that it is on the second time that you “crashed”, isn’t it ?

it did the same to myself and i read lots of people having a crash on the second time they try it. dunnow what to think about it.

#3

That sucks man. Just out of curiosity, did you get any ne veins/varicose veins on your dingdong while it was numb?

edit: can’t believe I wrote “dingdong”…well maybe a bit humour is needed while dealing with this.

#4

Onni, I think I got few of them. Actually I can’t say I’m 100% sure, because I always had a lot of visible dark veins on penis. But it is very likely, that there appeared few small veins of type you mentioned. Do you have any idea, what is the cause and/or how to fight this?

#5

Absolutely no idea. Mine hurt/stung like hell when they emerged. Still got them. Atleast JonA, Mew and a few others have reported this.

#6

Yes, it was my second time trying Propecia that I seemed to totally lose sexual interest/capacity. Could be the additional damage the drug caused or something more.

:smiley: humor is welcome. To answer your question though, not that I recall. I haven’t experienced the stinging/pain from varicose veins.

Thanks a lot for your support everyone. Anyone have any suggestions of what I should do with my doctor or Urologist next? I’d like some advice before I confer again.

#7

Request copies of your bloodwork, get a doppler to check for penile fibrosis/veineous leakage/bloodflow issues, and consider printing out and showing your Uro the research listed here as a possible reason for why you are experiencing penis problems:

Only way to know for sure would be to get a genital skin fibroblast culture/assay done to test for 5AR2 activity… this IS possible to do.

#8

Mew, thanks a lot for all of that. Those studies seem to speak directly to my problems, and if investigated I’m confident I’ll find that they might explain my side-effects. I’m going to print most if not all of those research papers and show them to my Uro upon my next visit and I’ll let everyone know what happens. Great work getting all of those.

I’ll go through with what you suggested and I’ll update everyone then. Thanks!

#9

One more you might want to bring:

propeciahelp.com/forum/viewtopic.php?t=59

Also, look at the studies listed at top of this section:

propeciahelp.com/forum/viewforum.php?f=26

#10

FYI, I’ve updated my original post with the questionnaire. I also have received lab results, and I’ll post that in the appropriate section once I get my scanner on. Thanks

#11

So to update on my situation… it has been about 7 months since I last took Propecia, and I still struggle with side effects of sexual dysfunction, mild myopathy and brain fog. I have only gotten somewhat better, but regardless, these aftereffects remain.

On 3/25 I met with my Urologist for a second time, and we discussed the blood test which returned showing out of range Free Testosterone (I’ll post this test soon). He said he was uncomfortable treating me with anything until I saw an endocrinologist to further examine me, and said also that if it were my Total Testosterone that were out of range, he would probably want to treat me. He also said that he shared my confusion in the cause of these symptoms, saying that he has given Proscar to many patients and that he has never heard of this happening. I informed him about Finasteride being found to cause depression, reduce prostatic blood flow, inhibit allopregnanolone and more, and he reacted by requesting I see an endocrinologist and to report back with him after. He also gave me a trial of Viagra to perhaps fix my sexual dysfunction. He offered this a month ago and I declined, but this time he made a point to re-assure me I had nothing to worry about, and told me to take one half of a pill (25mg). I don’t plan on trying Viagra since I don’t believe it will help my situation very much (I’d rather stay pure & uninfluenced by other drugs to focus on this issue), so I rather will wait until I meet with an Endo.

I’ve seen in the hormonal area of the board where it says to get certain hormones checked and I’ll make sure they are at my Endo. The time this whole debacle is consuming is definitely agonizing, as I’d like to be myself again and live out my youth while I still have it.

Lastly, I’ve completed one week of broccoli treatment and it seems to make a bit of a difference usually when or after I take it, but not long after. I do suspect I have elevated estrogen levels so I will continue doing this.

Any suggestions or feedback is appreciated

#12

Well a subnormal T-level will do that. Although fin SHOULD not cause that as it SHOULD NOT affect LH and FSH:/ Weird enough, my values were in the crapper after fin too and are now 3x that and I do feel better and can actually feel my dick. This drug truly is scary and I have a feeling many will get burnt before anything gets done about it.

#13

I just met with my first appointment with an Endocrinologist… never been to one before.

I introduced my story and issues to him, provided the very same blood test results that are available here, and he wasn’t convinced that the results were troubling or indicative of anything attributed to Propecia, which I am now off for about 8 months. Instead, he was more concerned with the anxiety and difficulty functioning normally that I am having, and my claims of sexual dysfunction, so it was assessed that I might have mental issues causing my problems (even the unideal hormone levels). I was prepared for this and told him that the drug is capable of interfering and inhibiting brain hormones just as it does to DHT, but he did not have much to say and was focused on the fact that I was off the drug for so long. The decision he made was to run another blood test to search for anything else awry, however when I tried to suggest checking for Progesterone, GABA and other hormones he told he he did not do such tests, and I would have to see a psychiatrist to have brain hormone tests. Didn’t know this…

So basically, I’ll have my third blood test done by next week, and I’ll be discussing the results with him then. I doubt the test will be much more extensive than my last one and I’m very disappointed about that. Yet more time expiring before I can get a true read on all the crucial hormones involved, but I plan on having them examined.

I’m very anxious to find the physiological evidence of my problems… I probably already have it with the last blood test I had done, where my T was low, Prolactin high and so forth, but - of course - the doctors are not making this easy.

#14

Well, a week later and I just had a brief phone call with my Endocrinologist, who seems to be operating more like a drive through doctor than someone interested in my complaints (which he suggests I now direct to my primary physician since everything returned normal). Says my Total T was around 614, my Thyroid came back fine, and thinks I have no endocrine disorders. Which is good, but I doubt he checked for Estrogen or DHT, which will be needed so I can figure out if my 5AR enzyme is working.

At this point I’m pretty confused and see three areas of possibility.

1 - the neurotransmitters are potentially a big problem screwing with my brain and my sexual function. I’ll be going to a psychiatrist to have neurotransmitter tests soon… I definitely feel like I’m disrupted in this area, since I’m so incapable of normal thought and cognition that I’m left helpless. I also have tight muscles which probably can’t be significant myopathy since my weight has not changed in many years, possibly due to GABA deficiency.

2 - Liver damage. If this is an issue, since the symptoms of such a problem are similar to my issues, at least I’d have evidence of damage brought on by Fin, instead of doctors shaking their head at me.

3 - Androgen Receptor desensitization/downregulation. This is a avenue I hope isn’t the case, but since my body apparently has adequate hormones, maybe my big issue is the hormones not being sensed and received. I’d have to check how to test for this and so forth.

I’m waiting to have my results mailed to me. I’ll post them once I get them.

#15

3pm, I have similar situation, that my endocrine system is quite ok. I will check again some hormones soon, but recently almost everything was within good ranges.

According to your points… I will write what I think about it as related to my case. I suffer only strong difficulties with getting erection.

1.neurotransmitters - of course possible, but in my case I don’t have such sides like difficulties with thinking, focus, no brain fog. I assume that in case of neurotransmitters I would suffer from these.

2.Liver damage. Over 3 months I really take care of liver. Liver enzymes are ok. Maybe liver needs more time. But I don’t know if it is possible to have only ED coming from liver damage. Or there are sides which I haven’t noticed yet/sides which haven’t manifested.

3.Androgen receptors. That would be really interesting to test it. But I don’t know if it is possible and if yes, then how? But still I don’t think that this is the reason of my sides. About each 48h I have one random erection during day and have all sensations and feeling like I was before fina. I get really strong erection which lasts for over 10 minutes without any additional stimulation or something. Similar feelings with morning woods. It would be really odd, that sometimes receptors are sensible, sometimes not.

Honestly saying, I keep reading a lot of stuff on this site and on google, trying to get any clue what can be reason for my sides and I really don’t have any convincing idea.

Sorry, that I write reply so strongly related to my case. Probably a lot of us suffer from different damage.

#16

No problem peres, our situations seem to be similar in many aspects, as with anyone else struggling with post-Propecia issues, hence the three side effect areas on the board.

I just wanted to mention here that I just tried to actually soak my testicles in warm/hot water, and about 5 minutes later I have like double the energy that I usually have since this whole mess started for me. It’s going away b/c I only did it for a short while but I thought I would just report some sense of improvement, despite it being temporary.

Anyways, I’m going to post my latest (& most-brief) blood test results later today. It shows what I’ve been thinking lately… that I do have the potential to be healthy in a hormonal way, but it’s been my mental cognition, chronic fatigue and muscle tightness/shrinkage/weakness problems that have hit me the hardest. I definitely haven’t had my mind clear or restful since this started, and I can’t fall asleep when I want too unless I crash. Additionally, I forgot to report that I have had visual issues from the first time I tried Propecia in late '05, which brought me to an opthamologist who checked me out and said I would be fine, and explained rods & cones of the eye. Now, I think it might be the whole withdrawl of corticosteroids problem, and while I’d like to have my CSF tested for pressure & neurotransmitters, I understand that this procedure can be dangerous.

I’m going to start to deal with this by getting evaluated by a psychiatrist, inform him how finasteride might have impaired by neurotransmitter balance, and see what he says. I’m more interested in a diagnosis and examination rather than a treatment, but it may come to me using Xyrem. Ideally, I’d prefer to have my DHT and Progesterone levels checked before I hop on another drug, but this is absolutely debilitating, and I need my peace and clarity of mind back.

I’ll let you guys know what happens for sure.

#17

I too have visual problems after fin, especially in my right eye. I had it both, but now the left one is fine. As with member 19 and a few others, there was nothing physically wrong with my eyes and the discomfort is at its worst behind the eye itself. I am also making an appointment with a psychiatrist to see if he has any ideas on what is happening with and if the depression and mental ill being brought by these issues can be addressed with medications (safely!).
My theory is still a combination of a hormonal imbalance and a shock to the prostate. The mental sides can be due to crashed T-levels and other imbalances and is surely worsened by the panic and depression brought by e.g. dick problems and changes, gyno, weight gain etc.

All the best and hope you make out of this.

#18

It’s weird if your junk works part of the time? I don’t mean to offend you, but are you 100% sure something is wrong? Depression can ruin your libido and it sounds weird that it sometimes works and sometimes doesn’t, I mean if morning wood etc. is there, it might be a psychological problem caused by stressing about your libido. Even my morning wood is soft now and I don’t get those strong “piss boners” I had prior to fin, so I’m guessing my problem is more complex than just hormones. Right after fin I didn’t even get morning or other erections for over two months!

Just a thought!

#19

Little update…

I met with my main doctor hoping we’d work together on finding the reason for my maladies (my brain fog leaves me pretty dysfunctional), but unfortunately, he was less-moved by my recurring complaints of brain fog and chronic fatigue, since none of my minimal blood tests have had alarming results. Instead, he is of the opinion that I’m just “in a rut” and need to do more activities, but he has provided names for a Neurologist and Psychiatrist. I’m hoping the Neurologist will be able to explain, or at least detect the fact that my ability to process information, express my true feelings, and function normally has significantly been compromised. I was actually even about to cry in the office, as I knew there’s something causing my problems, but I don’t have the mental ability to describe myself right now, so I just come off as senseless.

Lately, I’ve felt I may have adrenal fatigue, since I fit the symptoms of feeling very tired, having insomnia, and brain fog, but my doctor does not want to run any more tests right now. This only means I’ll probably have to go elsewhere, or find other means to test cortisol and DHEA.

I’m in a pretty bad spot at the moment, but feeling closer to any kind of diagnosis or remedy in any of my symptoms. I’m pretty sure my condition is reversible and fixable, but its finding the cause that’s the killer. Of course, feeling anti-social due to my change in mental capacity doesn’t help matters. Still, I’ll probably have proper assistance soon.

#20

Seeing Neurologist now, he’s going to have an MRI, Carotid Doppler, EEG and a Neuropsychological test on my brain. My main complaint was cognition and visual concerns, so we’ll see what these examinations show. I’m pretty confident at least one will show something, particularly the latter 2.

I find I have trouble believing fin’s effects could STILL remain a factor in my brain, but these side effects persist. Been following a diet for hypoadrenia sufferers, and I have felt some of my strength, energy and mental capacity return, but still pretty much struggling with the symptoms in my initial post. Saw maybe a 30% increase in energy and mental clarity.

My question now - is my slow thinking and cognition problems primarily a result of neurochemical imbalance, or the effects of adrenal fatigue and blood sugar issues? In the process of finding out now.