took Fin for 5 years and now I repent

Member Stories
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#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)?India but I live in USA

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,reddit

What is your current age, height, weight? 30 years old, 5’ 10" . Weight 170 lb

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Finasteride 1mg (Rx )

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? Male Pattern Baldness

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

How old were you, and WHEN (date) did you start the drug? 25 years old

How old were you when you quit, and WHEN (date) did you quit? 29 old

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

How long into your usage did you notice the onset of side effects? Immediately after 1 st week, then I quit and the side effects went away , so I continued for many years thinking this is reversible

What side effects did you experience that have yet to resolve since discontinuation?
Non-existant libido ,Severe ED, no penis brain connection, severely low sperm count

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
[x] 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
[ ] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[ ] Suicidal Thoughts

Physical
[x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] 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
[ ] 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? over the counter herbal medicines, vitamins etc.

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)? Yes everything was normal except the FSH was on the higher end 12.1 and sperm count was bad i.e.1million

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.

When I was 24 I was shedding badly. I went to a dermatologist and my male pattern baldness condition was diagnosed based on the blood work. I started taking finasteride 1mg everyday as prescribed by the physician, after 1 week my penis was numb and my morning wood completely stopped. Doctor said the side effects will fade out after few months and I continued. They didn’t, side effects persisted, now I had visible Gyno at least on one side. I stopped taking the drug and the side effects went away in 15 days. I was happy but started shedding like crazy, I had no dating life so I didn’t care about sex, so I restarted my Finasteride regime, this time 1 mg every other day, this continued for 3 more years. I was totally focused on my masters and getting a job, so didn’t bother me much. My libido was there but not as strong as before taking Fin. Coming to 2019 my existing propecia prescription had expired so I went on the website “KEEPS” to order finasteride, this time I started taking 1mg everyday for more than a year because my shedding had increased. Thankfully it worked and I had wonderful thick hair, but I stopped feeling my penis, I was peeing more often , and lost any feeling of orgasm. So in 2021 I came across propecia help and I was sweating and scared by reading all the horror stories. I immediately threw away the Finasteride tablets and stopped cold turkey.

Initially after quitting the drug I started feeling my penis again, my balls weren’t cold and hanging anymore . But I still had no libido, and no erections. I waited for 4 weeks didn’t see any noticeable improvements, I got a semen analysis done and I was diagnosed with azoospermia because my sperm count was 1 million/ml .I was devastated, now I am engaged and about to get married(arranged) and its been almost 5-6 months I have not seen any visible improvements.
Although worth mentioning is I had started taking Tongkat Ali and Shilajit, and after 3 months of quitting the drug I started having morning wood, crazy erections that won’t go away and I was feeling horny AF.
My sperm count went up to 19million/ml. (ref 20-200million), motility 52(ref 71-100), normal forms 13(ref 15-100), normal vigor 65%(ref >70%)
LH was 3.3 mIU/ml(ref 1.5 - 9.3)
FSH 12.1 mIU/ml(ref 1.6-8)
Prolactin 6.2 ng/ml(ref 2 - 18)
Testosterone free 579 ng/dL(ref 250 - 1100)
Estradiol - 23pg/mL(ref <=29)
Karyotype test(normal 46X,Y)
Y chromosome microdeletion(none found, normal)
I thought I was healing or probably heading in the right direction. This was when I was not working out regularly, probably once a week. I stopped taking all the over the counter medications.

But sadly once I started working out regularly(deadlifts, squats and bench press and a little bit of HIIT) my energy levels were depleted and I was not feeling anything down there anymore, and today after 2 months I had a semen analysis done once again(01/14/2021), my semen count was only 5 million/ml,(motility 60%(ref 71-100), normal forms 19%(ref 15-100).
And I didn’t even achieve orgasm while collecting the semen sample. I am not sure what’s going on with my body .

All the guys here have mentioned their sperm count were high or normal after quitting the drug. But my case seems to different. Even the urologist that I am seeing says he has no clue at this point.
Doctor said he is going to refer me to a subspecialist to find out whats happening, he said he was aware about PFS and propeciahelp but didn’t think it was real. He said he cannot see why would finasteride cause this.

What do you guys think could be the issue ? Because I am 30 and want to get married and have kids one day. Is the drug still present in my system ?Do I need more time ? Did I see the temporary increase in the sperm count because of the herbal medicines ? I have read a bunch of posts here and I am honestly at a loss and have no clue where and how to begin the healing process.

If you guys could recommend me any doctors here in California SF bay area or any where in USA who treat/acknowledge PFS patients , it would really help me.

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

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    • 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 []
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#2

Hey there @SayNotoFin and welcome,

First of all I’m sorry to hear you have had to go through this awful experience. Sadly, we do not have all the answers in terms of what’s going on and it’s still being investigated. We currently believe that androgen receptors are likely to be overexpressed and that there are epigenetic changes involved, which is not very specific and it doesn’t really hint at a clear target or a way to alleviate the issue.

At the very least I can tell you that you are certainly not alone in this experience and that with more time things hopefully get slightly better, although that certainly isn’t true for everyone here. I think that if some of those supplements had a positive effect on you then that’s good and I hope they will continue to help you.

It’s not uncommon for people here to report that they feel worsening of symptoms after physical exercise. I think exercising is something anyone should definitely pursue if the condition allows it, but if it doesn’t and it makes you feel worse, it might be wise to take it slow and build up over time and see how it goes, or just take a break from it altogether.

In any case, it’s very important that this phenomenon is reported to the relevant authorities. Please make sure to contact your relevant agencies that collect side effect data. It’s highly underreported due to the stigma of many of the mental and sexual symptoms and every single report counts.

In the meantime, take good care of yourself and try to avoid obsessing over the symptoms, although I perfectly understand how difficult that is.

Edit: Oh and if you can find the time please edit your member story and fill in the tickboxes relating to the symptoms. It’s important that our symptom data is as exact as possible.

Thanks for reaching out to us and sharing your experience!

#3

Hi @SayNotoFin, and welcome to the forum!

In California, Irwin Goldstein seems to be the one of the doctors with the most experience with PFS. He doesn’t have any silver bullet solutions, but he might be able to diagnose your fertility problem more accurately.

1 Like
#4

Thank you for taking time to read the message and respond . I really appreciate to have this community.
One thing that I fail to understand is that I have had breaks from taking Finasteride when I was doing the PRP treatment and that time my libido /erection always came back . I just don’t get it why not this time ? Even on Finasteride I had a decent libido , but post Finasteride it seems different

Do guys over here have days or weeks when they feel they are recovered only to realize that the symptoms come back ?

As far as the epigenetic changes are concerned can we induce a positive epigenetic change by using assistance of different supplements or drugs ? Which will reverse the effect ?

I read few posts about guys having success with tamoxifen , but my urologist refused to prescribe that. My urologist said he is going to prescribe me to a sub specialist for fertility to see if anything suspicious can be discovered .

#5

Thank you ! Do you if there are any PFS recognizing doctors ? I also have a endo appointment after a month , but was wondering if there are better doctors who acknowledge PFS exits and treat them accordingly.

#6

Besides Goldstein, there’s Eric Buxton (Endo) in Marin County, and Dr Mariano (psychiatrist) in Monterey. Those are the ones I know about.

Don’t expect any solutions from them, though. They just happen to be in the minority of doctors that recognize the problem.

Which is why I’d really recommend that you report your side effects to the FDA, so that we can get more recognition and medical awareness for this problem.

2 Likes
#7

@M_C Thanks I will report the side effects to the FDA . Do you know any members who had complete ED and recovered. For me even the 5mg cialis doesn’t work for me anymore. I am frustrated and I have lost hope, if I can’t have a woman in my life, I don’t know what to look forward to .

I want to know if it gets better with time ? I have seen people recover but very few of them were in Finasteride for more than a year. I am just not sure if this has done irreversible damage to my genitals . Although I did get my erections and partial libido back after 3 months of quitting finasteride, so I am not sure if i will see those days again.

If you know any threads which can alleviate ED , it would really help me. After reading through numerous posts my anxiety is through the roof and I feel more depressed.

#8

When I first got sick I had complete ED with no sensitivity at all. Complete anaesthesia. My erections gradually came back - not 100%, but good enough.

There are many other stories. But there are also many who do not improve at all.

Why do some improve and not others? That’s the €80,000 question.

2 Likes
#9

Made me laugh with the ending

1 Like
#10

@M_C Absolutely ! I am going to donate money next week. Do you know if symptoms worsen with time ? My libido has been going down and have total ED.

Should I start HCG protocol to see if it helps ? Does it only work for Hypogonads ?

I have read posts where people say herbal supplements have made their symptoms worse, is there a reason it appeared to work for me in the short duration before I stopped using them?

I am not sure my blood tests are fully relevant since I was on Tongkat ali and shilajit when I got the blood tests done.

I am honestly lost as to which protocol should I start following before it gets too late . I don’t have cognitive symptoms but I am worried I might eventually develop them.

#11

That’s awesome! I’m so happy to see people are willing to invest in science to find a solution to this.

This is what we all want to know, isn’t it? My impression is that side effects usually improve in the beginning, and then you either recover or reach a plateau. However, there’s also a pattern of repeating crashes that seems to come up. Then there’s another group who seem to get slightly worse over time.

But it’s much more complex than that, of course. E.g. my libido has gradually gone down (partly because of stupid mistakes with drugs/supplements), but anxiety has gotten much better.

It’s so frustrating that we don’t know more about why some people are very sensitive to various compounds after they get PFS.

I’m not sure if there’s a “too late” with this condition. It doesn’t seem to be a progressively worsening disease like Alzheimer’s (although, like I said, some people do get slightly worse over time). There are many anecdotes of people experiencing temporary recoveries (they “snap back” for 2-3 days) before becoming sick again, which makes me think that whatever damage finasteride did, it’s not permanent.

#12

Hello

I have similar symptoms.

After stopping taking the drug, the sperm count temporarily rose, but then fell.

The change in sperm count is

24milion -> 44milion -> 16milion

I don’t know why.

Testosterone is also falling steadily.

Test your testosterone You’ll probably get a low figure.

I wonder if there are any recent test results.