Oh God, This is really not a dream

Member Stories
#1

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)?
South Africa
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
What is your current age, height, weight?
42, 1.89m, 105kg
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.)?
1mg/day
What condition was being treated with the drug?
mpb
For how long did you take the drug (weeks/months/years)?
4.8 months
How old were you, and WHEN (date) did you start the drug?
42, 1 Mar 2021
How old were you when you quit, and WHEN (date) did you quit?
42, 24 Jul 2021
How did you quit (cold turkey or taper off)?
Cold Turkey
How long into your usage did you notice the onset of side effects?
3 weeks
What side effects did you experience that have yet to resolve since discontinuation?
all
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
[x] 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 or Difficulty to Ejaculate / Orgasm
[?] Reduced Sperm Count / Motility

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

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
[ ] Weight Gain
[x] 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
[x] 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?
None so far
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)?

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.

God what have I done. Never wished I could turn back time so badly. Like an idiot believed I would not be part of the statistics and would just stop if side-effects got too bad. Now, a life sentence - doom -despair - tears. The real realization has not yet set in, cause I still have some unfounded hope, which I know is nonsense looking at people who had a similar crash than me here.
Already mentally preparing to wave goodbye to my gf - not putting her through this - or living through the embarrassment of her having to deal with my limp mini penis.
Sorry for the rambling to follow - just typing as I think it.
Been on fin for almost 5 months, things were going ok. Thursday or Friday morning woke up with my cushion soaking wet - just thought it was because of the heater, but in hindsight it was something going whack upstairs in the brain. Both Thursday and Friday I have major anxiety - Saturday during day have phone sex with gf, after ejaculating penis immediately goes soft - think mmm that’s strange usually stiffness goes slowly. Take my fin tablet. Later that night look at my penis and I’m like wtf is going on here?! Looks shrunk to more of when I was a child. Freak out. Immediately resolve to stop meds and go on a google mission to calm my panic - after hope, delusion, denial pretty much realize I’m fcked. Looks like I had a “crash” and worse seems like anyone on here whose had the penile shrinkage never regain it and expecting a turnaround of symptoms like some of the lucky ones is pretty much out the window. Connection to my dick to brain is non-existent. Shrivelled and dead now since Saturday afternoon - like nothing, no life. Can feel some pressure starting in my perineum I guess it as the fin starts to wear off. Sleep is really bad, 2/3 hours over the last few nights. Brain is hyper awake.

What completely is freaking me out, is the (almost certain?) possibility that I will have a second crash coming down the line as the drug exits, and that my penis will shrink even further - I have read about someone who had that experience here - if there is any way to prevent or mitigate this please please let me know.

And I also read one should get on cialis asap for cases with penis shrinkage, but on the other hand people saying don’t take anything else at this stage. Thing is, if cialis helps with preventing fibrosis or helps against further shrinkage I should probably get on it asap? Do you guys recommend I make an appointment with an urologist to see how quick I can get him to prescribe it to me?

I know it’s still only barely 2 days but can I ever expect my penis to show some form of life again on its own? Is there scenarios where people dicks just never get filled ever again?

Another thing freaking me out: Low-T with Covid infection is associated with much worse disease and even death. Anyone know what my T-levels are at the moment probably from past experience? Scared to death now for leaving the house as well!

I really have no idea what I should be doing right now. I want to be as pro-active as possible. Should I start with lifting some weights and taking some of the recommended amino acids like l-arginine asap to start repairing while still in the acute phase and hopeful dampen some of the effects of a potential second crash?

Thank you

Also, thank you for everyone on the forum and for those lending a shoulder to cry on.

2 Likes
#2

Hello,
Sorry that this has happened to you.
My advice would be to stop panicking, try to stay calm and don’t feed your fear and catastrophic thinking. DONT jump into any drugs to try to resolve this. Wait it out give it at least 3 months. Take things easy and stay away from stress, do light exercise and things you would normally enjoy. Avoid stimulants and alcohol for the time being. You have a good chance of recovery. BELIEVE!! Where abouts in SA are you from?

2 Likes
#3

Thanks for the feedback @LazarusRy
I hear you. But I just don’t want to be in the position 1 or 3 months from now going, damn I should have gone on cialis asap as per this post
I am located in Cape Town

1 Like
#4

Any intervention could slow recovery or even worsen things especially while you’re in a state of flux. Please refrain. What’s 3 months of pain in comparison to a lifetime of hell. My sister lives at Shely Beach and is very supportive of pfs. One of her friends partner also has pfs but is in denial. Best of luck. Continue to seek support on here thats what we’re here for. It’s been a ife saver for me many times.

#5

Ok, that’s a valid point. I will just try and take each day as it comes and try to stay calm.
I took a prebiotic the last couple of days… do you think I should put that on hold for now as well?
Oh, interesting, that’s about 30min away from me. Your sister sounds like the kind of people we need.

1 Like
#6

Yes I’d put hold on any changes as it would potentially cloud things for you. She’s an absolute star I just wish she lived closer. If I didn’t have my son here in the UK I’d join her and would reside in SA its an absolutely beautiful place. My 2nd home! People are so genuine and friendly and no one i have spoken to has judged pfs negatively.

#7

If you don’t want to take any medication, penis pumping could be an alternative.

People undergoing ADT due to prostate cancer is encouraged to do pumping.

Apparently it promotes regeneration of tissue and decrease apoptosis, and is key during ADT to keep the penis healthy.

There’s a lot of studies done on it and it should be safe when comparing with PDE5I.

1 Like
#8

Thank you. Looks like a good alternative. Just ordered a Vacurec. Will not overdo it, just want to get some moderate blood in maybe once or twice daily.

1 Like
#9

After 2 months in Finasterid I had penis and scrotum shrinkage
After Stopping the drug brain penis connection break off. After one week from tat Point one evening Yi Had bloodstream in Penis and scrotum again, all became to it’s old size. I thought OK IT was just the normal sideeffekt. But ED and all the other symtomes remained.

All day, every minute I Thing, why didn’t you Check the Internet about this horryble sideeffects. Why did you Take this pills

Im shocked and suicidal of taking this Shit Up to now. But other Sides Like brainfog etc. Much better. Muscle Wastage and weakness going worse.

#10

:frowning: Scared I will be
sharing the same fate

1 Like
#11

Yes, Internet is full of warnings about the sideeffects. There are Videos, newspaper and TV Reports. And I took the pills without any Check. I Play the evening I took the First Pill a thousend Times in my mind and I Stopp than this ugly suicidal behaviour in the Last Minute.

#12

Same here

#13

Thats the Thing, depressed and psychological instabile people seem to have a predisposition. My urologist discribed me the poison two Years ago
Because of having a relationship I didn’t use IT. Than a Stopp and I started the pill. Out of any Control. Suicidal Ideatinon Not about the disease, but about my self harming by abuse this Shit.

#14

!!! I don’t want to frustrate you totally, because there is a Chance that you solve the sideeffects in the next 4 weeks without developing pfs.!!!

This is absolutely true. I Just want to Help you, staying you are Not allone with the weird Finistarid usage in 2021.

1 Like
#15

I did check but the articles I read said it was a small percentage and in most cases would resolve on cessation. Forums like these didn’t come up, wonder if by design. I did it because I was balding badly and have scarring on my head. Now I get to enjoy that was well once I loose the little coverage I gained. Going to be honest, at the moment I look forward to the day I finally die.

#16

Don’t Hurt your shrunken Penis by to exsessive using of the vacopump. Give dick some weeks to recover.

#17

I don’t want to go excessive, just get some blood in

1 Like
#19

Everything all right. You are Not in Panic? I told you, shrunken Penis can recover, If reductase gets more and more unblocked by Finistarid after half live and DHT Level increase, neurological blockades dissapear and everything can change to normal in the first weeks.
Even pfs symptomes Change to a better state.

1 Like
#20

Update on my status

Hi all

Just came back to give a quick update. I’ve been putting this off for years, mainly due to wanting to put all this behind me, but today finally decided to get this done mainly for this following reasons:

  1. To let @LazarusRy I’m ok and alive and kicking, and to thank him for all the support he has given me. He was truly a saviour to me in my darkest hours.
  2. I didn’t want to be like the others who post actively and then you never hear from them again.
  3. Maybe my post could potentially help someone else who are in dire straits.

I’m not really going to go into all the detail, but will provide a rough outline how things progressed from my last posts. This is written off the top of my head, MANY years later, so it will probably be a bit all over the place.

I went to a few more doctors and specialists, who were all mostly dismissive and not helpful at all.
My symptoms at one stage were pretty severe, and all over the place. Both mentally and physically. I came very, very close to doing something very stupid, at the end it was a final prayer that suddenly gave me respite from my suffering (I don’t care if you’re religious or not, just conveying the truth for me on what transpired).

This spurred me to look up a doctor from my past in another town who had moved his practice, so it wasn’t easy for me to locate him initially and it was a distance to travel while barely being able to walk to the corner store. I just remember him being open and friendly from visits long ago. Long story short, apart from my weight loss of 15kg in 2 months which freaked him out and he didn’t have an explanation for, his main theory was that I messed up 2 hormonal pathways in my body with finas and a potential vit D overdose from supplements (I took high dosages daily for a long time) - said he had seen quite a few in recent time because of covid. On a side note, I myself also have a theory on the specific supplements themselves. Not sure if they had been tainted or mixed with something, but long ago, I took the same brand (vibrant health) of vit d3 for quite a while and also had similar bad and weird mental/physical reactions - only now realized it could maybe be related. I remember I was also convinced there were steroids in the pills or, seeing as my symptoms so closely matchedsymptoms of steroid withdrawal or when they don’t taper off, or something like that - I don’t remember the details I was in a very strange/delusional mental state, I’m just putting here as reference.
After blood tests came back, I think he told me to take zinc and some other supplement iirc, and told me to do strength training exercises for bulding up my testosterone. From what I remember tests showed low s-bicarbonate, highish anion gap, low testosterone, high ferritin.
I barely took any of the supplements, because my symptoms drastically improved after having moved to the coast as I will mentioned in the next section. I have thrown out all supplements, and have not taken any since then. I just don’t trust them anymore - too many variables and lack of oversight, not that I trust the pharma industry either.
The outcome from that doctor’s visit gave me some hope that at least someone was listening and had an idea. Still not sure if it was correct or not. I remember coming home and still suffering and not really recovering, but in the following day or two I remember noticing mold growing on a new blender i bought. i then remember having struggled with mold all over the apartment for quite some time. Long story short, I uncovered a big black mold batch behind my bed headboard, where there was water seeping into the walls from the upper floors. I just remember thinking that I’m probably living in a mold haze and didn’t even realize it. I had to get out of there. I got the keys for my parents beach house some hours away, and decided to go live there for a while, and plan my next moves. The first night there I slept the best I had in months. My sleep slowly but surely returned to normal and it was such a relief and wonderful feeling. I also noticed my mood slowly improving over the weeks. I never went back to sleep at the apartment and ended my lease, sold about 95% of my appliances and furniture, and got a company to clean out the apartment.

To this day I am still staying at the beach house. Long story short, everything kept improving with time, and as I sit here today I feel completely well and normal. Regarding my guy downstairs, If I had to put a number to it (physical/performance), it would probably be 8.8/10 from what it was before fin. That being said, I am also much older now, so it could just be that. The size and shape have returned to what it was before. No more anxiety/depressed state after ejaculation. I’ve had sex again without issue. The main thing is that I would say that I don’t get as horny “just because” as often anymore. That said, I could arouse and masturbate myself to ejaculation more than once daily if I had to.
So, in summary, I think either it was the combo of fin and vit d overdose or contaminated vit d or having lived in a mold infested flat for so long that messed me up. Or it could be something completely different that just coincidentally resolved itself with time after I moved. That’s about it.

Seeing as I just wanted to come give my testimonial, and want to put this all behind me, I don’t think I’m going to come back to this forum again soon , but I will check in again in some time to see if there are any follow up questions that I could maybe answer.

I wish everyone here that’s suffering the best and for healing and my final message would be : DON’T GIVE UP, and we don’t know what tomorrow might bring, and maybe try a break from your environment for a few weeks, who knows.

My prayers with you all.

PS. and to anyone thinking about taking finasteride or similar drugs for the first time, run as far away as you can. Trust me, it’s not worth it. Only people here understand what a laughing joke “having hair” is compared to the consequences of rolling the dice.

5 Likes
#21

Thank you for coming back to post my friend. I often worried about u as I do others who disappear from the forum.

It’s great to read your story such recoveries, of some getting their lives back. should give hope to everyone

Again some common themes, exposure to mould can have a profound effect on this condition either as a pre curser or as an additional toxin worsening the pfs symptoms.

I had years of exposure to mould in my bedroom pre the development of Rheumatoid all setting the stage for pfs years later. I now find myself in the group that are very sensitive to all man made products/ chemicals of all types. Everyone with pfs seems to develop sensitivities to different degrees, whether that be to 5aris or a lot more. Degrees of disease severity seem to be linked to the level of sensitivity and those who get worse tend to become increasingly sensitive.

Another common theme in recoveries for those with long standing pfs is the ability to create a lifestyle where all problematic substances / chemicals, processe foods etc are removed giving the body a chance to heal. Yours story is another one that bears this out.

I’ve tried to limit exposure over recent years but it seems nigh on impossible to do that while still having a stake in the ground with functioning people. Something I need to change. Living a nomadic life for however long it takes seems to be the only way out

In my opinion Limbic Disfunction (one of the pfs facets) has been tripped via over exposure to neuro toxins. Any and all future exposure no matter how small keeps the body in the fight and flight causing chaos across multiple systems.

People can develop pfs like symptoms from pharma drugs, chemicals, implants all sorts of man made shit…

Sorry I could go on… but

A big thank you for thinking of us all, for the PM and kind personal words. Your update and post has great value to the community.

Take care man…and live it to the full

Kindest

Laz

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