Schneider's story

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)?
Germany

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

What is your current age, height, weight?
38, 177 cm, 71 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 per day

What condition was being treated with the drug?
Hairloss

For how long did you take the drug (weeks/months/years)?
4-5 years

Date when you started the drug?
2005

Date when you quit the drug?
2010

Age when you quit?
26

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

How long into your usage did you notice the onset of side effects?
Few months

What side effects did you experience that have yet to resolve since discontinuation?
ED, Peyronie’s, IBS, social anxiety, Gyno, insomnia

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

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

Misc
[X ] Prostate pain
[ X] Persistent Fatigue / Exhaustion
[ X] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[X ] 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?
TRT

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)?
Low T

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

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

Hello everyone. Thought I’d sign up to share my experiences and get some advice. I took finasteride for 4-5 years around 2006-2010. I can’t remember exactly it’s just too long ago. When I noticed that a mild gyno had grown on me and more and more negative reports were heard, I jumped off. The gyno was also not classic with cartilage directly under the nipples but rather scattered lumps in the chest area. Well, I’d rather have an ending with horror than a horror without end. I have never noticed any sexual side effects. Well, in hindsight, I have to say that while I was taking finasteride, other changes also made themselves felt in me. I became more withdrawn, developed social anxiety and food intolerance/irritable bowel syndrome. Nevertheless, I always thought I had made the jump soon enough. The big shock a few months ago. I felt hard plaques in my penis, diagnosis Peyronie’s. A disease that otherwise mainly affects the late 60s and rarely the late 30s. At the same time, erectile dysfunction begins and the sensitivity of the penis decreases rapidly. A urologist asks me if I regularly have a morning wood and I’m perplexed. I’ve never thought about it, but in fact it must have been a long time since my last morning wood. My cavernous bodies probably aged massively during the period of fin consumption and I have now received the receipt.I was prescribed tadalafil and all of a sudden I started to feel action again at night and in the morning. But now throw in chemicals again for the rest of your life… And who knows how long it will last. The endocrinologist diagnosed me with low testosterone. Once 11 nmol and once 5 nmol. Am now on TRT. Does it change anything? Presumably finasteride completely shot my axle at that time. Unfortunately, it has become clear to me that this stuff will probably haunt you until the end of your life. As the dermatologist said to me: If the libido weakens, stop taking it. How foolish I was to trust that. I also consider making an appointment with Prof Zitzmann. I am currently wondering whether the journey makes sense. He also seems to just prescribe TRT most of the time. What do you all mean? Also, how do you rate his androgen resistance test? Does this diagnosis help you?

Self-reporting template - ONLY USE FOR FUTURE POSTS TO REPORT ANY TRIALS OF TREATMENTS, NOT YOUR INITIAL MEMBER STORY

  1. Name of the therapy/substance:
    • Dosage:
    • How often you took it:
  2. Status
    • Still using [ ]
    • Stopped with no lasting change to initial symptoms [ ]
    • Stopped with persistent change to symptoms [ ]
  3. Duration of use: Days [ ] Months [ ] Years [ ]
  4. Response when you started:
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  5. Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  6. Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
2 Likes

Welcome @Schneider! Thank you for telling your story. Every story helps us understand this disease a little bit better.

And I’m sorry you’re still struggling with the side effects. Would you say that they’re the same as they were in the beginning, or has there been a lot of change on the way (apart from the Peyronie’s)?

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Very sorry to hear that you’ve been dealing with side effects for so many years now. You have some pretty difficult symptoms that I can definitely relate to. What kind of TRT protocol are you on?

TRT will most likely not do anything for you, for whatever reason Finasteride or any other anti androgenic inhibitory drugs with these side effects permanently change the function of androgens and to what extent we don’t know. I used TRT for 8 months and I never got an erection or my libido back and I lost muscle mass even while on it. There’s also a few others here who already were taking TRT and once they got PFS it stopped working all together.

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I am on 100 mg testosterone enanthate per week

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Doesn’t sound good. I’ll still give it a try. Nothing much too lose. And with t levels that low I might get other problems like diabetes pretty soon as well.

I did have improvements regarding social anxiety and being more social in general. I’d say my life was quite good until the Peyronie’s diagnosis. Now this diagnosis has totally crashed me. My thoughts are always about: why the hell did I start taking this drug back in the days…

“Nevertheless, I always thought I had made the jump soon enough. The big shock a few months ago.”

This is absolutely horrible, if you think you didn’t enter the hell after a great mistake and than it takes you after a decade.

I’m only one year in and I’m in permanent regret over taking the poison and having destroyed my life for nothing. It was no need for such a brachial medication at this time.

As mentioned by @Taw, I was on TRT (Androgel) for 3 years before I took Proscar. Apparently the AndroGel kept my testosterone levels propped up despite the PFS, because the numbers showed no decrease.

I went from daily sex then, to having no sex for over 3 years now. I’m still on TRT and my test levels remain constant.

Honestly, the loss of sex and penile shrinkage are the least of my worries. My brain fog, utter exhaustion, poor balance/coordination suck life’s essence out of me. I wish you a better recovery. My retirement years are a joke. Jim

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