My story, 21 years old, finasteride for 11 months. Two years after quitting. Where to go from here?

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)?
Sweden
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?)

What is your current age, height, weight?
24, 183 cm, 80 kg
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Finasteride
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1 mg/ day
What condition was being treated with the drug?
Hair loss
For how long did you take the drug (weeks/months/years)?
11 months
How old were you, and WHEN (date) did you start the drug?
21 years old, February 2016
How old were you when you quit, and WHEN (date) did you quit?
21 years old, January 2017
How did you quit (cold turkey or taper off)?
Cold turkey
How long into your usage did you notice the onset of side effects?
6 months
What side effects did you experience that have yet to resolve since discontinuation?
Impotence
Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

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 or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

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

Physical
[X ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ X] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[X ] 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
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Viagra 50 mg every night. Vitamins - D, E, L- Arginine,
If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?
Did a testosterone test, turned out within range.
Anything not listed in the above questions you’d like to share about your experience?
Brain fog has gotten worse over time, two years since quitting.
Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

I was 21 years old with bad self confidence and had noticed diffuse thinning since the age of 16. I had lost a fair share if hair, 1/4 of what I had at 16 perhaps and was getting desperate. I wanted to do something to halt the loss before it was too late. So I went to my health care provider, who was very young and did not even know what propecia was, but she gave me a prescription. I knew about the the possible sides before starting the drug, and was rather scared about them. I was very hesitant about starting and went between this forum and Baldtruth.com. I ended up with telling my self that I would quit IF i experienced sides.

So i started in February 2016 and apart from some slight ball ache the first week everything went along with me not noticing anything really, the hair did not stop falling, but no sides. Efter maybe 6 months I lost my morning erections and nightly erections. I read how this was kind of common but not a dangerous side and that it would probably disappear if continued the drug. So I did. I also started noticing how my erections were getting weaker while masturbating, and a couple of moths on I also had vary little or no ejaculate. And when I diad have, it was watery. Shortly after I lost my erections completely and at that point I threw the pills out the window.

A day after, or maybe two the morning wood was back in full force and i felt great. It lasted maybe for a week and the it was gone. It wasn’t a brutal crash, I could still get hard, a good erection when needed, but no morning wood or nocturnals. I also had problems concentrating and brain fog which was manageable at the time. This is in February 2017 and this state is unchanged until December 2017 when I think i noticed a slight change in penis curvature. But it took me another three months before really noticing how bent it had become and also, shorter, thinner.

For some reason I waited to this autumn before going to visit my doctor. She sent me to the urologist, who said A.) That he was young and inexperienced, B.) That he had never seen anything like it (this he said when i showed him my hourglass shape, which only occurs in flaccid state and was there already while on propecia) C.) Prescribed my Viagra and said it was a bloodflow problem. D.) Almosed laughed at the possibility of it being Peyronies “Why would you have that?”.

This is where I’m at right now, brain fog is worse than ever, feel dumb as fuck compared to how i used to feel. It’s like my mind is being stopped from fully functioning. The sexual sides are about the same, no nocturnals, no morning wood and obvious Peyronies or general fibrosis of the penis. I don’t know where to go from here. I’m so tired of the public health care, they don’t give a shit unless you’re bleeding with your intestines hanging out. I’m thinking about going to a private clinic. And not being believed is exhausting, “It’s all in your head!”, oh really? That my, penis has shrunk? That it is curved more than ever? That I, a 24 year old have not had morning wood in two years? All in my head? Please…
Anyway where should i start, which tests do you recommend? It feels so hopeless…

4 Likes

Hi there Tommyz and welcome to the forum.

I’m really sorry to read your story. It’s sadly an all too familiar experience of unnecessary battles with the health care system to be both believed and to be taken seriously and your problems properly looked into. Although there are no existing protocols for addressing our problems, if you feel you have the strength, it would probably do no harm to seek out a professional who will give you the consultation that you rightfully deserve, whether that be by going private or by explaining to your G.P. that frankly the previous specialist admitted that they were young and inexperienced and because your problems are not reflective of an off-the-peg solution then you would like to see someone else. The fact that the specialist acknowledged the hourglass shape of your penis and had not seen anything like it before is evidence that something is indeed wrong and hopefully this is documented in your records.

There are several projects which are taking place here which hopefully will help with uncovering what has happened to us all. It would be absolutely fantastic if you could take part, especially as I believe that 23andme may be offering a Christmas discount just now: Important Announcement: Two Community-Led Research Projects - Please Participate

2 Likes

This: https://link.springer.com/article/10.1007/s11930-018-0161-6

might be of use if you’re going back to see a doctor and are having difficulty in having them acknowledge your position.

Also, what Scotsman said.

2 Likes

Thanks for such quick answers! I will look into the 23andme when I get back from work. I have looked around somewhat on the forum regarding for example hourglass formation when flaccid. It looks as if more people here have experienced it but few if anyone have any explanation why it occurs. Its seams as if hourglassing connected to Peyronies is almost only when erect. Such strange symptoms of this drug…
Is it worth visiting an edocrinologist and paying for tests? Has anyone had any luck with that?

Don’t waste your time on endocrinologists mate. Pfs isn’t a hormonal problem, it’s a total body imbalance and your dick is just suffering from the imbalance. Read the recovery stories like Chi, cdnuts, ihatepropecia702, JN1. Seems like the key to recovery is an excessively healthy lifestyle.

2 Likes

Ive had the merry go round with the doctors but don’t let this put you off mate ive since found a good urologist that is looking into things for me.
My advice to you is don’t go rushing into protocols and supplements until you have exhausted every medical avenue possible.
When I first took finasteride it was due to steroid induced hairloss when things went wrong i listened to all the wrong advice tried a multitude of things that im sure just made things worse.
I would advise anyone to seek medical help get blood test find out where your system is before tampering even further with things.
Cover all the basics to make sure your not over looking a fundamental problem.

4 Likes

I think it’s very much a hormonal problem, but not one of serum levels. While I agree tests are useless, I think the issue is with the androgen receptor. Low libido, erectile problems, brainfog, tiredness, mood problems, less body hair, less hair loss. These types of symptoms are quite clearly showing that androgens are not binding properly.