PFS symptoms appeared after withdrawal

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#1

Where are you from (country)?
United States

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?)
Googled my Finasteride side effects

What is your current age, height, weight?
Age 24, 5’7", 135 lb.

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?
Male pattern hair loss

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

How old were you, and WHEN (date) did you start the drug?
Age 21. February 2018.

How old were you when you quit, and WHEN (date) did you quit?
Age 23. March 2020.

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

How long into your usage did you notice the onset of side effects?
I experienced on-and-off difficulty maintaining an erection about 1.5 years in.

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
[X] Loss of Libido / Sex Drive
[X] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] 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
[X] 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
[X] Testicular Pain
[X] 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
[X] 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?
N/A

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)?
I took a blood test for testosterone levels in October 2018. Result was high: 860 ng/dL. Have not tested since.

I took Finasteride for about 2 years to treat relatively mild hair loss. Around July of 2019, 1.5 years in, I suddenly started having trouble getting and maintaining an erection while masturbating. I also had generally low libido. I attributed these symptoms to the drug and stopped taking it, which resolved the problem after approximately 4 weeks.

In mid-August, my hair loss increased noticeably as expected, so I resumed normal usage of Finasteride. I was fine for about 6 months, until late February of 2020, when I began experiencing the same erection difficulties. On March 2nd, I decided to stop taking the drug once again, for good this time.

In late March, I noticed reduced arousal and an unusual lack of sensitivity in my penis during masturbation. By the end of the month, my testicles had a constant, dull pain (like they were being squeezed) and my genitals were cold to the touch. My penis lost some rigidity and began to take on a small, wrinkled appearance. Orgasms were less pleasurable and resulted in intermittent sharp pains in my testicles. Urinating was also mildly uncomfortable due to a slight burning sensation, but that was very transient.

The worst of the symptoms lasted no more than a week and a half. As of this writing, my lingering problems are difficult-to-maintain erections and very low sensitivity in the head of my penis. Orgasms feel surprisingly normal, but it’s difficult to achieve them; sometimes I just give up. I also think my penis has lost girth (length seems fine) in both flaccid and erect states, and it has a stretchy/floppy quality that wasn’t there before. I still occasionally get morning and spontaneous erections.

Fortunately, I never encountered any of the mental effects that seem common in PFS cases, other than feeling a bit lethargic. I’m still holding out in the hope that I recover fully, but I have a lot of uncertainty about it. And quarantine is probably making it worse, so there’s that.

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#2

i used for 3 days , on the 3 day i notest that i cant maintaining an erection if no stimulation , if its stops erection goes back ,

another thing is more dificult getting a erection in the first place

looks like we have low libido or we dont have strength to move the penis

im in 2 months now on this hang up there

#3

Update ~2 months after initial post, ~4 months after onset of symptoms:

Have not taken any meds or tried any remedies thus far; just waiting for time to heal me. I can’t say I’m seeing much improvement. Neither the shrinkage nor sensitivity has gotten any better. I can maybe get erections more easily now, but they’re still much weaker than normal. At least nothing has gotten worse.

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#4

Taken any blood tests or anything? Maybe try some cialis at some point – I don’t know for sure if it’s a condoned treatment on here but I would imagine it was. I am about 4 months post-cessation too and I reckon if things aren’t improved at 6 months then I will try cialis. Good luck not to have cognitive issues, hope your physical ones do improve as time goes on. I have had a handful of moments when my penis/testicle issues get better, as in long stretches where my testicles are not shrivelled, and very occasionally (with much stimulation) will get a fairly full erection, which I imagine with cialis would come more naturally. Then again, have had recurring issues of 70% strength erections and extremely shrivelled testicles. Do you have this sort of variation?

#5

Even if you’re yet to see the desired effect this is the wisest move. I know it’s painful and extremely tempting to start loading yourself with different supplements in an attempt to return to normality, but it’s a huge risk that often leads to dire consequences.

Others experience improvements over time and I wish you best in that regard.

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#6

No blood tests yet.

Thank you. I know I’ve been fortunate in that regard.

Yeah, I know what you’re talking about. The stretches where I’m capable of getting a strong erection are very short-lived though and return to the softer state within minutes.

#7

Posting an update so it doesn’t look like I recovered and abandoned the forum.

I’m still dealing with PFS after almost 10 months: poor libido, inability to get a full erection, numbness, shrunken genitals, etc. No improvement for any significant stretch of time. Some days it’s very slightly better, and other days it’s worse. I’m single, so it’s not like it’s affecting any personal relationships, but it still does a number on one’s outlook on life and self-esteem.

I haven’t been to my doctor all this while because I considered it a waste of time. From some of the stories here, I didn’t think he’d take me seriously or be able to do anything about it. I’m planning on giving it a shot anyway and scheduling an appointment tomorrow to discuss my options, but I’m not sure how to broach the subject in a way that makes me sound credible. When I first started finasteride, a different doctor in the same practice spoke highly of it and said any potential side effects were highly unlikely. I know there’s some informational material floating around this site that I can show him, but I worry it won’t be enough.

Has anyone had a productive conversation with a clinician about this that led to a positive outcome who’d be willing to share advice?

#8

Quite sure an appointment won’t do much, if anything. Medical community simply doesn’t know what to do with us, sadly enough. Probably their gonna just deny everything and say u r delusional (easy, no? A thing that nobody accepts doesn’t exist, that’s the logic).
If I was you, I would go to an endocrinologist and get a full blood panel, that’s the best and only thing medicine can do to help you know where u r at.
I would try to bet on a holistic approach to beat PFS.

#9

I chatted with my doctor today. He didn’t deny anything or call me delusional, but he was skeptical of finasteride’s role. He said my dosage (1 mg) was too low to cause serious side effects, and that any problems should have ceased once the drug left my system. He said his medical experience made him believe there was some other issue at play. However, he listened sincerely as I explained my side of the story and seemed to keep an open mind when I informed him of what I knew about PFS. He referred me to a urologist.

#10

Something I should have noted earlier:

A session of weightlifting may have relieved my symptoms temporarily. On the 2nd, I lifted for the first time in a while. Less than an hour and nothing intense; I’ve always been kind of a skinny guy, so I can’t do much anyway. By the 4th, I was able to get the strongest erections I’ve had probably since the start of quarantine, and my penis actually had some sensitivity when masturbating. I would say I reached 70-75% of my pre-PFS feeling.

These improvements all went away by the 9th or 10th, but it’s interesting to me because weightlifting was one of the first things I tried way back in April/May 2020 (and continued intermittently during the summer), and it did nothing back then. Yet this one-off session after months of being sedentary seems to have helped. Granted, I don’t know for a fact that exercise was responsible for my temporary alleviation, but I can’t think of any other plausible explanations. I guess the next step is to see if I can reproduce it.

#11

Could be an increase in testosterone from lifting? Ive long suspected i had lower T levels even before fin. Im gonna try zma as it helps boost t levels and helps with sleep. Will see if i have progress with that. Thats the only thing i can think of as to why lifting would help. For tou though

#12

It’s possible. I’ll find out soon what my T levels are. For what it’s worth, 2 years ago (8 months into taking fin), I suspected I had low T too and the results actually came back high: 860.95 ng/dL. Wonder if that all came crashing down at some point in-between.

#13

Time for another update. Lab results from early March were:

Testosterone, Serum: 574 ng/dL
Free Testosterone(Direct): 20.0

So while lower than pre-PFS, still within the normal range.

Also of note: though I don’t want to speak too soon, I may be recovering as of… almost exactly the 1 year mark since I crashed. Most of my symptoms have drastically reduced in severity seemingly overnight. I often feel 90-100% of my normal self these days.

My recent lifestyle and diet changes:

  • I’m taking multiple walks a day, where before I was quite sedentary.
  • I started taking Vitamin D3 in February because I find it boosts my mood.
  • But I sort of got busy/distracted and dropped my workout regimen a couple weeks ago, which made it all the more surprising when I started getting better.

Other than that, there isn’t much. I never tried any of the various supplements or protocols that are suggested here. I know this information probably won’t be very helpful to most, but hopefully it adds to the evidence that recovery is possible even after a long time. I will keep this forum apprised of any new developments.

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#14

Hey random,

Glad to hear you’re recovering!! So happy for you! I’m actually new here and it seems we have similar symptoms (I only got sides post-fin). Most of my problems are being less energetic and severe loss of penile sensation; has your numbness reduced significantly since a year ago?

#16

The numbness is definitely better. The return of feeling surprised me this morning when I was just putting on my underwear. I wouldn’t say it’s all the way there yet (at least most of the time), but the improvement is like night and day.

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#17

I stopped using this forum a long time ago, but I’m providing an update now because my last post gives the false impression that I eventually recovered.

I did not. A few days after my post on 27 March 2021, my self-proclaimed recovery went up in smoke. I was just too disappointed to say so here. In the two years since, I have gone through several similar, unexplained ups and downs in the severity of my symptoms, which all relate to my genitals and sexual function.

If I had to give it a score, I’m almost never below 60% these days, and I rarely touch 90%. I can have sex pretty normally. Even though I can’t get them as quickly or maintain them as well, I have good erections most of the time and really good erections on occasion. If I want to foolproof it, I just take 2.5 or 5 mg tadalafil a few hours beforehand. My sensitivity is good, and orgasms are at least 90% of what they used to be. I usually get morning erections, even if they’re often weak.

My flaccid penis still doesn’t look normal. It’s longer than it was before finasteride and no longer draws close to my body when it’s cold. The middle looks thinner than the rest at times. It vacillates between rubbery and soft many times over the course of a day, for no clear reason.

One critical piece of information I learned in the past year is that I have, according to my urologist, “significant proximal and midshaft corporal fibrosis.” I’m now operating under the assumption that this is the crux of my issues, and I’ve been researching methods of reversing such fibrosis (so-called “regenerative therapies” in the literature).

Overall, I’m okay, and I recognize that I have one of the luckiest outcomes for this condition. Do I wish I didn’t have to deal with this stuff in my twenties? Yes. But I’m immensely grateful for what I do have, and if I remained like this forever, I could live with that.

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