Recent sufferer, trying to stay positive

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)?
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

What is your current age, height, weight?

25, 6ft, 150 lbs
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 every other day

What condition was being treated with the drug?

Hair loss

For how long did you take the drug (weeks/months/years)?
Every other day for 3 weeks

How old were you, and WHEN (date) did you start the drug?
25, March 5th 2020
How old were you when you quit, and WHEN (date) did you quit?
25, March 25th 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?
Some time in the first week
What side effects did you experience that have yet to resolve since discontinuation?
Erectile dysfunction and low libido

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
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate
Reduced Ejaculate
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
Extreme Anxiety / Panic Attacks
Severe Depression / Melancholy
Suicidal Thoughts

Physical
Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
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?
None
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.

Started taking fin for hair loss after speaking with a pharmacist, urologist, and dermatologist about it, all of whom said it was a relatively harmless drug and that side effects while rare, always go away after discontinuation. I ultimately decided the risk was worth it (it’s not!) and began taking 1 mg every other day. I was on the drug for about 3 weeks and during that time I began noticing some mild side effects. There was less interest in sex, masturbating was feeling different, like more of a chore than something I actually wanted to do and my penis was beginning to feel different. The first side I noticed was a mild pain in my testicles.

I have no idea why but at the time the side effects hit I wasn’t too concerned. I continued on the drug for about another week or so before finally deciding it wasn’t worth the risk. 3 days after my last dose is when I crashed. That period was the scariest time of my life. I could not get an erection, there was absolutely no feeling in my dick, i couldn’t even focus on sexual thoughts for more than like 3 seconds.

Thankfully I have improved significantly since that initial crash. After ten days erections started coming back and things seemed to be back to normal! I started masturbating again daily, sometimes twice a day. I must have gone too hard too fast though because now here I am.

I want to stay positive because I AM improving and my case seems very mild compared to most. I don’t have any of the other mental or physical sides and have no trouble sleeping. Everything I’m experiencing is sexual. Since that initial crash nearly two months ago, testicle pain has gone away, I regularly get erections at night and in the morning, and the strength of those erections can be anywhere from 60-90%. I’ve even managed to have sex a couple weeks ago! My penis doesn’t feel as different in texture as it did before and it’s no longer curved or rotated like it was at the start of all this. So basically my recovery has been a bit up and down, almost like a zig zag as some on here have described it. Basically I think I will recover from this but man is it scary.

The reason I am posting now is because yesterday I hit a real low. I was hooking up with the person I’ve been seeing for a few months now and I could not get hard at all. It was during the day when my erections are typically their weakest. I also know I was in my own head about it which didn’t help I’m sure. Later that night and the next morning I was able to get hard enough to where it probably wasn’t noticeable and we were able to mess around a bit but man was it awkward when I couldn’t get it up.

I will continue updating as my symptoms change and hopefully improve. For now I just wanted to share my story and hopefully get and give some support from people going through similar experiences.

Wanted to follow up even though no one replied initially. I guess my post was a bit too wordy? It’s been a month since I last posted and for a while I was improving greatly! In fact, up until last week I was feeling 100% back to normal. I stopped masturbating for 2-3 weeks and my erections were 100% full again and my libido was back to close to where it was pre-fin. I had 2 hook ups last week and masturbated once and am now back to a low point. Erection strength and libido are both pretty low against

Is this how it will always be? Feeling like I beat this nightmare just to have it return as soon as I engage in any sexual activity?? Again my case does seem mild compared to most and my low points have gotten less severe with each cycle. But as I approach the 3 month mark I am starting to worry.

It’s still too early for you. A lot of people with only libido and erection problems recover within a year.

It’s the people with other physical symptoms that get it for life.

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Oh really? That’s the first I’m hearing of that but it’s reassuring so thank you!

The fact that you made some recovery before crashing again is a good sign. You’ll probably crash a few more times every now and then before returning to normal.

When you have other physical symptoms, it’s a sign that finasteride did far more than disrupting hormones, and it’s a real pain figuring out what happened. Recovery almost never happens when you have other symptoms.

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Wanted to update. I had a guy over last night (I’m gay) and we smoked a lot. I thought my symptoms had gotten mild enough to the point where I’d be able to perform but when we started hooking you felt nothing. I didn’t know how to explain it to him and he didn’t exactly take no for an answer…I just want this all to go away it’s ruining my life!
I think there were a number of factors at play in this instance beyond just PFS. The guy was being very pushy and forceful which obviously turned off what little arousal I’d had. Also we smoked a lot of weed. And then my roommate was home so I was paranoid about him being able to hear us. I’m freaking out though that was one of the worst experiences of my life and idk how to prevent that from happening again.

I’d say you’re on a good trajectory. At least you aren’t getting worse.
Just try not to think about sex.

Wanted to give an update. My new strategy is to only masturbate once a week but still work on getting erections when I wake up (if I don’t have morning wood already that morning) and before I go to bed. I actually masturbated twice today, I think my libido is starting to come back which is good.
I’m able to get practically full erections now but I’ve noticed they don’t “feel” the way they used to. It’s almost like an empty hollow feeling. But the orgasms still feel good.
Idk it feels like there’s changes to these side effects every week or two, it’s such a roller coaster ride. But I am definitely improving and I’m hoping as long as I don’t overdo it again I won’t crash this time :crossed_fingers:t3:

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Sharing another update - I’m doing really well overall! I was able to have sex last week and fully enjoyed it! My libido is nearing pre-fin state and my erections range from 80%-100%. I’m even able to get them spontaneously once in a while. My foreskin is beginning to feel like my own again whereas before it always felt loose and just kind of off.

I’ve masturbated a few times since having sex but I’m REALLY trying to limit myself still out of fear that I’ll crash again. Does anyone have any tips they could share to avoid crashing, if that’s even possible? I think limiting how often I masturbate for the time being is a good measure to take but any other advice would help greatly!

I’m just really happy things are trending in a positive direction and I’m hopeful this will continue. I’m wishing all of you nothing but full recoveries as well!

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Hi! Spouse of an “Unacknowledging” PFS suffer -meaning he’s never fully admitted his symptoms, nor their cause. I very knowingly lived it, however unfortunately! We’ve been married 18 yrs+ and I know him better than he’ll ever know himself (loving eye-roll) I believe denial, fear, disbelief, & shame to be almost insurmountable hurdles for some PFS sufferers. My guy still has not taken the survey, which saddens me. I wish this drug could be eradicated.
Anyway, we are about 90 days from my last update, 5 months since his last dose of fin., 4 mos since his horrible crash, and I can’t tell you what a relief it is to report that things in his head (&outlook) AND “down there” are better than back to normal! All structures & traits are healthily endowed, responsive & sustainable, and pleasure is even heightened with a bit of “hyper”sensitivity. STAY POSITIVE! As several here have already mentioned, there is much to remain hopeful over in early days.
My guy has stopped all meds (heart meds-see my previous posts) and we are well on our way to writing a more hopeful PFS, chapter 2. I will say that open communication, selflessness, love, compassion, sexual creativity and open mindedness have played big parts in this chapter. Finasteride took a lot from us, but we’re not giving in! Neither should you-any of you! Keep up the good fight! :heart:

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Thank you for sharing! It’s always reassuring to hear of people who have made full recoveries. While I’m not completely better yet, my low points seem to be getting less low and my high points are much closer to my pre-fin state. As it stands now, I can get by as is and live a healthy functional life. Of course I still want nothing more than to make a full recovery.
I look forward to reading more on you and your husbands journey. He’s lucky to have a spouse as supportive as you! Best of luck.

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It’s the people with other physical symptoms that get it for life.

what is other symptoms

Muscle loss, changing facial structure, etc.

Hey guys, I wanted to wait a couple weeks before sharing this update to know for sure. I think I’m recovered! Maybe not fully just yet but I’d say I’m about 95% there. My erections are full and my girth is back. The tissue of my penis feels like my own again. My libido isn’t quite where it was pre fin but it’s there enough to get aroused when I need to.

It’s been almost 6 months for me so to those reading this who are still struggling after a few months I say hang in there! I didn’t take any supplements or do anything different with my diet or lifestyle but just let my body heal on its own. I know it’s tempting to try something you’ve heard has worked for others but my advice would be to just stick it out for awhile. Easier said than done I know.

Wishing you all full recoveries and hoping I am done with this nightmare for good! :crossed_fingers:t3:

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Congratulations man, that’s great to hear. Two weeks of near-full-recovery is huge news and means (I imagine) that even if you were have another bad spell of a week or so, a full recovery is massively likely in the even longer term.

Out of interest, what’s your diet and exercise been like? Alcohol consumption? Did you ever have any testicular shrinkage? And how hot is it where you live? My best spells have always been related to sunny weather.

Again, congratulations and all the best.

Thanks man! Really happy with the progress I’ve made the last couple weeks and trying not to do anything extreme that might alter it. My diet is fairly healthy though I do eat out a couple nights a week and have junk food from time to time (pizza, fries, etc). Though I gave up meat almost a year ago (before ever taking finasteride) so I’m on a pescatarian diet. I usually work out about 5 days a week doing cardio and weight training.

I drink a couple nights a week. When I first crashed I tried limiting myself and didn’t drink or smoke much if at all. But as my symptoms got less severe I started going back to my regular habits.

I live in nyc so the warm weather is just starting to go away and fall weather is kicking in. Hopefully that won’t affect my progress in any negative ways!

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Oh and regarding testicular shrinkage I didn’t notice that as a symptom so if there was any it wasn’t significant.

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