Don't know where else to turn...

Member Stories
#1

  1. Where are you from (country)?
    USA

  2. 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 Search - something like “Propecia Side Effects”, “how long until sex drive returns” etc…

  3. What is your current age, height, weight?
    29, 5’10, 145 lbs

  4. Do you excercise regularly? If so, what type of excercise?
    Work, swim, etc…

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

  6. Why did you take Finasteride (hair loss, BPH, other)?
    Hair Loss

  7. For how long did you take Finasteride (weeks/months/years)?
    2 years on and off, I am not even sure I would have to get records

  8. How old were you, and WHEN (date) did you start Finasteride?
    27

  9. How old were you when you quit, and WHEN (date) did you quit?
    29, Dec last year

  10. How did you quit (cold turkey or taper off)?
    “Cold Turkey” after my findings

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

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

  13. How long into your use of Finasteride did you notice the onset of side effects?
    Honestly, did notice lack of sexual desire but wanted hair back so badly thought I could always discontinue use and regain libido. Not the case. Also experienced other symptoms which seem to be related to this drugs negative effects. If possible, seem to be worse after stopping Propecia…

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation?
    Sex Drive, Unable to “think straight”, memory loss, Concentration and cognitive thinking problems… again, almost seems worse after stopping

Put an X beside all that apply:

Sexual
[X ] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[X ] Loss of Morning Erections
[X ] Loss of Spontaneous Erections
[X ] Loss of Nocturnal Erections
[X ] Watery Ejaculate
[X ] Reduced Ejaculate
[X ] Inability to Ejaculate / Orgasm
[X ] 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
[X ] Slurring of Speech
[X ] Lack of Motivation / Feeling Passive / Complacency
[X ] 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
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[X ] Muscle Weakness
[X ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[X ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[X ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[X ] Frequent urination
[ ] 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?
    Folic Acid, Fish Oil - PLEASE let me know of anything

  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)?
    Don’t know, never reviewed blood tests myself, only had blood test done after about 6 months I believe. Then after change from dermatologist to MD, wasn’t asked to do another blood test to my recollection.

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

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

Hello everyone. I don’t know what to do at this point. I have NO ONE (am not comfortable with anyway) to talk to about this.

I starting taking Propecia to halt and hope to maybe even reverse hair loss. As this “medication” was so well marketed, I was certainly aware of it and made an appointment with a local dermatologist, after friends would notice my hair thinning. At that point I thought I need to do something before it’s too late. Dermatologist prescribed Propecia and I began taking it.

I did notice a lacking of sexual desire, but was under the impression that once I discontinued the drug, this side effect would subside and stop. If anything, my libido has gotten worse. And I now have quite literally, ZERO desire for sex. It has been 3-4 months since I stopped taking it.

Nothing puts me in or prompts that mood or desire any longer. I mean NOTHING.

Also, I have certainly noticed other symptoms that through my recent research seem to be tied in to this horrible drug. I seem to quite frequently be in a sort of brain fog. I don’t know how else to describe it. I can’t remember things. I stumble over my words and have trouble with cognitive thinking which used be no problem for me. I am in sales and customer service and have been at this very same job for 13 years now. But only recently am I having this problem and it is affecting my performance at work and home.

I have a very attractive wife and we have not had sex in many months. How much longer can I say I’m just stressed from work or make an excuse. I can’t play it off any longer!

I can’t believe I started taking this horrible, HORRIBLE drug. I should have just let my hair fall out but I was feeling embarrassed about losing my hair and thought it was safe to try and see if I could keep it. I’ve been doing research lately and found that the website for Propecia is now a splash page and that does nothing but terrify me more.

I feel like a zombie. It’s hard to explain. It’s almost as if I’m in a completely different state of mind. I don’t get excited or am unresponsive emotionally, but at the same time feel down and sensitive. I don’t know where else to turn. My home life is hanging on by a thread. I have a beautiful son and wife and I am afraid of losing all that I have, but how can I expect any more patience than I have received so far.

Has anyone any suggestions to regain any sort of normalcy? I just want to be myself again. I want to think clearly, be myself and enjoy life and my family. I can’t go on like this.

#2

Dude, you need to tell your wife. I am in the same situation, except only brain fog, but it’s getting worse. No cure yet, I will post if I find anything. But I can encourage you to search around in the forum, there are a lot of options you can try. I am about to start a fasting period, apparently people have had success with that.

Good luck, hang in there - and please, do tell your loved ones!

#3

Man, I’m sorry to hear. I agree with mikewalter - tell your wife.

Cognitive/mental side effects tend to improve over time. Cutting sugar and caffeine from your diet is a good way to begin the recovery process. It took me about ten months before I was really able to do my job adequately after I quit fin.

#4

Thanks MikeWalter and MerryChristmas for the replies, advice and the encouragement. I was obviously in a desperate state of mind when I wrote that post.

I can’t believe so many people are being affected by this, just like me. So many similar symptoms with the common denominator of fin.

I hope to learn some from a community like this, and am thankful for it. I have do what I can to try and get back to some normalcy.

#5

I can only tell you what has helped me. Get a 24 hour urinary cortisol test and a reverse T3 test. Post your results when you get the them back…

#6

it seems PFS is more devastating to a family man. i hope you’ll get better soon on the mental side as it is more important than sexual aspect.

#7

Thanks for the replies everyone!

Moonman, I asked for some bloodwork. I’m not sure exactly what is scheduled to be checked, they said they are going to call me for an appointment, but I will ask about the tests you mentioned! Do you know what it is that I should mention or be looking for, or what the regimen is that may help?

Thank you!

#8

The information is on the main website:

propeciahelp.com/testing

Review the main propeciahelp.com “POST FINASTERIDE SYNDROME” section.

#9

exactly what i’ve felt. the thought of losing my hair really scared me, thinking fin will spare me this embarrasment i took it without hesitation. the odd thing is i was fine for almost 4yrs on fin quit cold turkey still doin good for the next 4yrs until last feb when i started losing ground rapidly. even blaming myself for not taking this drug much earlier as it might have prevented the thinning/shedding.

now there’s no day i would not think of this word, the big IF?. if only i had stopped when the ringing in ears have started i guess i would have still saved my penis from damage. i can deal with tinnitus but the changes in my penis is the one i find it hard to accept.

#10

ben, im right there with you on the wife and kid, im in the same situation and i have little boy thats just over a year old…its very hard but you will feel better emotionally and the anxiety will go away with time.

and if you havent told your wife yet definately do it because you cant keep hiding this from her. I hid my condition from my family for months and it only made our relationship more difficult. your family needs you and they can be a source of encouragement.

#11

Because if you’re married, your wife expects a good railing every now and then. It’s easier to deal with only having to satisfy oneself sexually as opposed to two. If you’re alone and can’t get your own dick up, you don’t need to make an excuse to yourself.

#12

Hey guys, I’m back. Basically not a whole lot has changed. It’s been ~four months since I posted initially. Sorry to have not followed up until now. Life has been crazy and I’ve been just sorta getting by for a while.

But yes, I was wanting to get some blood work done to start and follow up reply with the results. I requested the blood work, but that was before I read the reply to this thread, so I only asked for Testosterone because I didn’t know any better or wiser. Doctors office never called for an appointment (there is a lab in the same building as them they work with). I’m not sure they are taking this seriously, or am not real sure his office has it together. He is a D.O. (I know that doesn’t make a difference), but he is an older guy and often when we are talking, he whips out his little reference book and we look it up together. I could do that. He just recently got a computer system and he groans about how he doesn’t know how to work computers or the software. I don’t know, that doesn’t necessarily mean anything, but this issue seems like you need an open minded, innovative, up to date on this particular subject, doc to help you through. I will call again. Or, startup with another doctor.

This issue certainly does not help a relationship, but we are trying to get through it.

We have now had had sex, semi-successfully, but less than 10 times since my post. So, not much. Not much at all. And, it’s (I’m) not the same by any measure. And, although I could apparently just go without sex, I don’t think the relationship can go completely without. So this is serious for me.

Sometimes I’m able to, sometimes not. We’re talking about the same girl I’ve had sex probably 1000 times totally normal before this.

This was never the case before. I feel like now that I am doing it for the sake of the relationship, that if it were up to me I just wouldn’t have sex ever again. And, I know that’s not normal. I realize that a normal person 30 yrs old should have normal healthy sexual thoughts and desires. I just don’t. It’s like something has disconnected there, like a sort of atrophy of my penis. Only you guys can understand.

There are no ‘morning woods’ or passing sexual thoughts. When I do ejaculate, it’s not much and the consistency is watery. It barely even comes out. No matter what the scenario is I can never obtain a complete erection. Never.

I’m back here because I want to figure this out. I have to. To me, it is extremely complicated (especially the deeper the researching gets), so I am VERY thankful to have a community like this to turn to for advice.

Otherwise I feel like the doctors would steamroll me and pay no attention.

I thought Cortisol was a hormone in response to stress so we can have heightened function and awareness? I’m not doubting the suggestion at all (I appreciate it!) just wondering how it fits in to this.

So should I start there?

Should my prostate be checked?

I know I need to read through the FAQ’s but there’s a lot and honestly, my brain almost exploded from starting to get into it. I need the time to go through it slowly. Like I said, I have a full-time job, and family, it’s hard to find the quite time to read, more importantly - absorb and understand all the info.

What tests should I be asking for?

Do you think I should switch docs? See an endocrinologist?

#13

If you have trouble with erections, have you tried Cialis? Maybe 20mg twice a week or even trying 10mg first. If you find Cialis doesn’t work, adding an alphablocker can increase its effectiveness. Just try to go with the lowest Cialis dosage that works and don’t take them close together.

Unfortunately, this doesn’t improve the sensitivity… Dulls it a little more actually, but, if it keeps the sex going it’s good.

#14

And I’m still in this F’ed up situation. I managed to get my GP to actually get some blood work done. At first, I showed him the short list that is here on this site (without showing him what specific site, just copy/pasted the “short list” onto a piece of paper). He basically hardly glanced at it, thinking i’m just trying to be some internet educated medical professional. Like I want to spend another damn second worrying/ researching about this. I JUST WANT TO LIVE MY PRE PROPECIA LIFE AGAIN!

Anyway, I managed to get him to agree to check my T levels… and somehow that was not done, instead a CMP and CBC were the only things done. The only things out of range from the CMP and CBC were:
CO2 - 33.0 (21.0 - 32.0)
ALT - 37.7 (0.2 - 36.0)
A/G RATIO - 2.9 (1.1 - 2.5)

So nothing really stands out there. If there is anything from that test I should post other than that let me know… But I asked what the T results were and he said he didn’t order it, which is BS because it was what was mentioned specifically. I said I would like to have at least that done and he said “what are you going to do when it comes back normal” in a condescending tone. Like this isn’t embarrassing enough on it’s own.

Well managed to get T done nonetheless.
Testosterone, Serum
Result - 616 ng/dl
Reference - 348-1197

[b]So T is being measured normal. Should I have LH, FSH, DHT tested as well (somehow)?

Where do I go from here? I know that isn’t much to go on but any help or advice is appreciated
[/b]
I’m 30 and have the sex drive of a 7 year old child. My penis is not the same size. My ejaculate is 1/10th of the volume it used to be. I have not had “morning wood” since this “crash”. I’m fogetfull and can’t remember shit that people look at me funny because I can’t remember. I don’t have any kind of desire for sex or anything related. I literally have about as much desire to have sex with a woman as I do to have sex with a hole in the ground, or any inanimate object.

I am fit and in shape. NONE NONE NONE of this was ever a problem until Propecia. Then, especially worse just about immediately AFTER I stopped it. Is that a coincidence? Unlikely. The people on the hair forums argue it and just call you a “fearmonger” or wtf ever and it’s insensitive and they just don’t get it. So, according to them the exact time frame I took and discontinued Propecia and had these issues is nothing more than coincidence even though there are sooo many other accounts of people experiencing the same exact thing!

My relationship is in the toilet and somehow still hanging on. If it wasn’t for the information about this PFS that I have been able to show her, it would have been done by done. She is probably with me now out of convenience alone.