My Story - Hoping for a Recovery Soon

Member Stories
#1

  1. Where are you from (country)?
    United States of America

  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 about propecia

  3. What is your current age, height, weight?
    5’8", 21 years old, 140 lbs

  4. Do you excercise regularly? If so, what type of excercise?
    I do a quick cardio and weights about 3 times a week.

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    I don’t subscribe to any one diet, but I think I eat alright.

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

  7. For how long did you take Finasteride (weeks/months/years)?
    I took it for about 3 months

  8. How old were you, and WHEN (date) did you start Finasteride?
    I was 20 years old, and started taking it about October of 2010

  9. How old were you when you quit, and WHEN (date) did you quit?
    I was still 20 years old when I stopped taking it in January 2011

  10. How did you quit (cold turkey or taper off)?
    I quit cold turkey

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

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

  13. How long into your use of Finasteride did you notice the onset of side effects?
    I noticed about two weeks in.

  14. 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 (I think)
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

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

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

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

  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.

My hairline started to recede when I was 17, and by the time I turned 20 it was getting pretty noticeable, so I went to see a dermatologist. She recommended I try propecia to help slow my hair loss, telling me that the sexual side effects only occurred in men much older than me. Even if I did get side effects, she said, they would be gone two weeks after I stopped taking the drug. I did some google searching and found the propecia side effects site, and told her about it, but she didn’t take it seriously at all.

I got some generic finasteride and started taking it 1 mg/day. I noticed loss of libido and sexual dysfunction a couple weeks later, but I was convinced it was psychological. Then one day, I was in bed with this girl, and for the first time in my life, I couldn’t get it up. I also noticed that I stopped getting random erections, and that I lost my morning erections. I decided enough was enough and quit the drug after 3 months.

I never really had much of a crash that I remember, but things never fully recovered to the place they used to be. I’ve always seemed to be able to get it up, miraculously, during sex, but instead of being consistently horny like I used to be, I’ll have a day where I’m normal followed by a couple days where I can’t even get it up. I used to be able to have sex 2-3 times per session, but I have since gone down to 1 max. Lately I think it’s been getting worse. I haven’t had an erection in 3 days. I’ve tried masturbating with and without porn. Every time I’ve woken up at night, I’ve either been soft, or just a tiny bit hard. The weird thing is that, even though it’s as bad as it’s ever been, it’s not that far from my post propecia base line. This is over a year after quitting the drug, mind you!

So now I desperately want to go back to the way I was. My hair loss has resumed, but my sexual side effects haven’t disappeared. I don’t think it’s psychological. I’m thinking about seeing a doctor to get my hormones checked out. What I want to know from you more experienced folks is whether you think I’m on the road to recovery. Does it sound like PFS? I think it’s a relatively mild case compared to some others, but it’s still frightening. I feel like I have the dick and hair line of a 60 year old.

#2

Hi drx, welcome to the forum.

I would say it sounds like PFS symptoms especially since you’re so young. The one thing working in your favor (at the very least) is that your symptoms are indeed pretty mild, even though they are still serious.

The first step now since you’ve already identified your possible condition is to definitely get some labs drawn to see where your levels are. That’ll help you figure out possible methods/treatments to consider, if indeed you need to consider any.

Keep your head up high and stay educated and you can rest assured that if you are actually going through PFS then you’re one step closer to recovery. Good luck man and keep us all posted.

domino

#3

You say that your symptoms have gotten worse lately and your past improvements have diminished? If that is the case then it does not sound as though you are recovering.

I am 21 and suffer similarly to you. There are times when I can manage sex and masturbation but they are now rare. Nocturnal and morning erections are extremely rare.

Read through the FAQ section of the website. If you have trouble with doctors, be persistent with them and print off the new side effects warning that Merck added recently.

#4

Things are still getting worse, which has me quite concerned. My gut is telling me it’s propecia causing all this, but is it really possible for things to be getting worse 1 year after taking a drug for only three months? Obviously, people here will tell me it is.

I’m a lurker on the bald truth forums. I wonder if any of you guys here have watched this show: thebaldtruth.com/hair-loss/spencer-kobren-discusses-post-finasteride-syndrome-5512/ . I thought it was an interesting listen.

Anyways, I just noticed that I lost two patches of leg hair on the back of my calves, symmetrically on both legs. I haven’t had morning or nocturnal erections since last posting, but I’ve been able to sustain a weak erection while masturbating.

Emotionally, though, other than the slight freakout when I saw my leg hairs missing, I think I’m doing pretty well. I haven’t suffered any mental side effects yet, and I’m feeling pretty content with my life outside of the sexual realm.

I set a doctors appointment for this Thursday. I just have to find a way to get my insurance card without having to tell my parents about the issue…

#5

Well this completely and utturly sucks. The doctor could not have been less helpful. She basically felt up my balls and called me healthy. When I asked her about propecia she told me it was absolutely impossible for that to have any effect on me once I stopped using it, and since I was a healthy young male, she didn’t want to give me any blood tests. She basically said that guy my age only get sexual problems when they get to anxious about it.

I not only have no morning wood, I’m sure I no longer get nocturnal erections. At all. Is this common? Any advice on what to do?

I also am starting to notice my pubic hair thinning. Fuck.

#6

Did you bring ANY supporting materials to backup your case? Media articles? Published studies? Merck’s own label updates regarding persistent side effects??

Most of this stuff is on the main website of propeciahelp.com and in the Finasteride Studies section of the forum. Use it to your advantage when dealing with medical professionals.

Other than that, you’ll probably need to try again with another doc.

#7

I’ve avoided going on to this website because I’ve been trying so hard to convince myself that everything I’m going through is psychological like my doctor told me. Unfortunately, no amount of positive thinking has had any sort of impact on my state. I go through brief periods of seeming healthiness, but they rarely last more than a week, and they seem to be getting fewer and farther in between. I get tired very early and feel fatigued most of the time, but I have difficulty sleeping. My libido is at a 0. I have no desire for sex whatsoever. I could go weeks without masturbating and I never get morning erections. My pubic hair has thinned to a noticeable degree. I see plenty of bald patches straight to the skin.

I went to a new doctor who did a testosterone and a thyroid test on me. Here are my results:

Component Value Range
TESTOSTERONE 3.2 2.2 - 7.8 ng/mL
THYROID STIMULATING HORMONE 1.838 0.400 - 5.000 uIU/mL

Based on my numbers, he says I’m completely normal and sees no reason to schedule another appointment. I am now 22, and things have gotten progressively worse since quitting the drug two years ago. But I can’t find a doctor who will tell me something is wrong.