PFS since 2.5 / 3 years | I want & will recover

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)? France

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? 25

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?

For how long did you take the drug (weeks/months/years)?
2.5 / 3 years

How old were you, and WHEN (date) did you start the drug?
2015 - 21 years old

How old were you when you quit, and WHEN (date) did you quit?
23/24 years old

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

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

What side effects did you experience that have yet to resolve since discontinuation?

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
Loss of Libido / Sex Drive
Erectile Dysfunction
Complete Impotence
[x ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate
[x ] Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
Emotional Blunting / Emotionally Flat
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
Extreme Anxiety / Panic Attacks
[ x] Severe Depression / Melancholy
[ x] Suicidal Thoughts

Physical
[ x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
x[ 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?
Cialis

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.

Hey there,
I took finasteride for 2.5/3 years, and I still experience some side effects, like erectile dysfonction, loss of libido…
It’s kinda hard, because I had some blood test, but my testosterone is fine. My prolactine rate is a little bit high but nothing abnormal for my doctors.
I have to do a blood test for my thyroid hormons, but I don’t know… I wish they would find something.

Welcome to our community @MoodRing and thank you for sharing your story. If you haven’t already, please have a look at our new user guide

Blood tests can be useful insofar as ruling out other problems but there are currently no consistent blood test biomarkers that point to a diagnosis of PFS.

2 Likes

So, I just have read my results, and everything is cool.
But it makes me so nervous not to understand whats happening in my body, I feel a little bit depressed about that

Hey there.

I’m feeling very depressed right now. And even if I really want to believe in a recovery, sometimes it’s just too hard.
Many questions in mind, is my condition permanent ? Will time make myself better ?
I have a huge lack of motivation.

My endocrinologist gave me Andractim, and told me it helped some PFS victims. But idk… I’ll see, I only took it for 6 days.
I also follow the advice of Moonchild. and I take BHB/Butyrate supplément.

Could Time heal me ? Even if it’s two years, I’ll take it. But when I read than some of the victims are still experiencing side effects after a decade… makes me wanna surrender.

I don’t know about those supplements but I would be cautious! Would hate to see you get worse, as there is no known solution supplement, so be careful!

Do you have cognitive side effects? And with the sexual sides, do you have any physical changes to your genitals, or is it just reduced libido and weak erections? Does cialis help? I am sorry to hear you are struggling, I don’t know about likelihood of long-term recovery, obviously unlikely but not impossible to see some improvement, I suppose. I would say, as someone with physical gential changes and slight cognitive issues, I would love to be as recovered as you seem to be, based off of the checklist in your OP. And if cialis could improve things further for you, that would seem close to an actual recovery, in effect. If you have recovered from physical changes to genitals, or cognitive issues, I would love to hear the timeline of how that went.

Stay strong, and best wishes.

Thank you for your answer.

My symptoms : low/0 libido, ED, watery semen, lack of sensivity, cold genital, somehow thinner. Mainly sexual.

I get tired quite easily, and my skin is dry, and a weird back pain. But it is very manageable for now.
And for the cognitive symptoms, it’s very hard for me to define, because I used to be a little depressed since my teens days, and it’s hard to tell if it’s linked to finasteride or not. I think my memory is more weak, as my capacity to learn, but I don"t if it’s the drug or just if I’m obsessed with the condition.

Cialis helps me in a way, but far from completely.
Thank you for your answer tho, much appreciated.

I know what you mean about the cognitive issues, it being hard to know if it’s just you over-obsessing with your own thoughts. Are you able, with stimulation, to get a strong erection, even if only very briefly? I am able to do that much, and I generally think of it as a good sign. Out of interest, have you tried viagra? Supposed to be stronger. And have you ever had any brief, temporary recoveries? Or only negative symptoms with no respite at all?

I think there’s basically very little we can do with all this other than to stay positive, keep your mood up. Stay unstressed, live healthy, get exercise and lots of sun, the more you focus on sexual sides the more your whole psyche will get dragged down. If you have a clear mind and the only bad thing is annoying sexual issues, you can definitely find a ton of things to enjoy that will keep you away from depression. Being on sites like this can be good, but can also be tortuous and demoralising. Best thing is to focus on the positives and wait for time do to what it can. You took the drug for a long time, instead of being (like me) someone who took it only a few times before having the bad side effects – I would assume that means was more thoroughly in your system, so improvement could take longer and be far more gradual. I don’t mean to offer false hope; I genuinely do imagine that people who took it for a long time are going to see far longer and more gradual improvement, so just take it easy and let your body heal itself.

No need to focus on worrying about the side effects-- they will recover when the body is ready for it, just take care of what you can take care of for now, which is your own psychological well-being.

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No, when I masturbate, I’m at a level of 70% I would say with Cialis. But it doesn’t last, and my erection tend to disappear without stimulation.
Yes, I’ll try to ! Your words are welcome. Sometimes I’m very motivated, like I try to hold on, and sometimes I’m just depressed haha my mind is a rollercoaster.
I’ll keep all of us informed, thank you !

Just read again your message, and it made me calm I think, so thank you again for that.

Since July 17th, I’m using Andractim (5mg/day). It’s a DHT Therapy, the goal is to intensify the 5AR activity. It was prescribed by an endocrinologist who treats PFS sufferers and he claimed it has helped a lot of them.

So, it’s been like 20 days, and I don’t know if I feel anything, I don’t want to be supersticious and it’s quite early in the 6 months treatment. But I think I feel a little (very little) brain/dick connection, and my semen is more whote, still watery tho. But it’s definetely a little more white, stronger and a little bigger in quantity.
My skin is a little bit more oily too, I’m have few acne spots. I’ve masturbated twice today, and the first one was pleasurable, orgasm too. The second one, was less pleasurable.

I’m just writing my experience 'cause it makes me calm. I enjoy to write a lot when I feel bad, it’s kinda therapeutic for me.

The goal is to make this thread a diary, and to follow my improvements (fingers crossed) through this journey.

Love.

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Are you located in the US? Just wondering what doctor you went to to get the prescription for andractim??

I’m french unfortunately

Ah I see thanks for the reply I wish I could get my hands on topical dht

I hope your Andractim treatment goes well! I don’t know much about it to be honest, but that’s likely because the majority of members here are from the US, so they don’t have as much experience with it. Just skimming the wikipedia page it doesn’t seem obviously harmful, especially if you’re using under direction by a doctor who at least acknowledges that PFS is a condition.

And yeah, having some kind of diary-type outlet to take the measure of things from time to time can be very useful. And I’d say oily skin and acne are good signs. Outside the sexual conditions, you never had especially dry skin or aching joints, or other miscellaneous symptoms, right? I would say things look not too bad for you, for now, at all – I hope your getting a lot of sun, and taking cold showers, they both help.

How bad were things at their worst would you say, if you were to rank how you felt from 0-100%? And how do you feel now? For example, I was 30-40% at my worst, having settled at 85-90%.

I did experience dry skin. Sometimes my joints are aching but nothing too hard, so maybe that’s not linked to finasteride.
I think I’m sitting at 15-20% since 3 years. And Cialis could bring me to 50%/60% but temporary.
I never experienced a sudden improvement in my condition.

Today I woke up without a morning erection, my penis was so cold. It makes me kinda sad.

You know, I wouldn’t have thought, from reading your symptoms, that you were at 15-20%. For me, the absolute worst of 30% was with complete brain-penis disconnect and fairly bad brain fog. But I had no dry skin and aching joints, and no suicidal thoughts (which would have taken me down to 0%). When you talk about being at 15-20%, are you just talking about genital issues? Because even though that is a bad point, you are still close to 100% perhaps in other areas? Best to remember the things that are going well in addition to the bad parts.

And this condition has lots of variation. Last night I felt pretty great, but a couple days ago I would wake up without a morning erection, and feel “off” all day. So don’t put too much emphasis on bad points, just look for an increase in the occurrence of good days.

When I say 20%, I compare to the side effects I’ve been experiencing of course, and not my health in general. That’s the limits of using percentage to describe your condition, imo. I’m close to 100% in the side effects I never experienced for example gynecomastia, testicular pain, penis curvator, hearing loss…

I just compare to my old self. I know there are some worst case in this forum, and they have my full support, but using percentage is only informative for following one person’s evolution imo. I have genital change tho, my penis is thinner and shorter.
I filled the list quite quickly I have to confess.

Yeah I understand what you mean, not saying you should be feeling bad for not having worse symptoms! Just have a wider general idea of what the symptoms for this condition are. The less you have, the more likely that a relatively simple hormone treatment like the one you’re on could actually make positive improvements. So good to keep in mind the positives you have.

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Yes, I hope you are right !
Thanks for your positive thoughts, hope you’ll get better too

So, it’s been a month with the DHT Therapy.
As I was on holidays, I did not masturbate for like 5 days. But when I did on monday, my sperm was increased, whiter and way thicker. The day after, the quantity was reduced but still more important than before, and still whiter and thicker.
Sensivity increased a little too.
I hope it’s a good sign for future major improvments.

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andractim impossible to get…would you be able to provide name of the endocrinologist who was able to source it?