UPDATE: 67 Days Since Cessation - Mostly Better, Still Some Problems

Member Stories
#1

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 Search

What is your current age, height, weight?

  1. 6,1". 180 lbs

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

Finasteride (generic)

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?

Maturing Hairline

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

9 Months (Sept 18 - April 19)

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

  1. Late September 18 - don’t know the date for sure.

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

22, 4/10/19

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

Cold Turkey

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

~6 Months

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

UPDATE: I’ve been off the drug for 36 days and my ED is about 70% better. Still have mild insomnia, penile shrinkage, and loss of libido, but those seem to be improving as well. No crash yet!

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
[X] Loss of Morning Erections
[X] Loss of Spontaneous Erections
[X] 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
[X] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[X] Severe Depression / Melancholy
[ ] Suicidal Thoughts

Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] 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
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[X] Other (please explain) Mild Insomnia, waking up 2-3x per night for 15-20 minutes.

I’ve been off the drug for 9 days after learning that side effects can be permanent. As you can imagine, I’m pretty terrified, but haven’t given up on recovery yet.

I got Finasteride through the Keeps service when I was 21 year old. After about 6 months of use, I started experiencing sexual side effects, going from having sex 3-4x per night to 1-2x, and losing spontaneous erections. But because my sides were mild and I could still have sex, I waited for them to get better - I believed the line about Finasteride being safe. In retrospect I had some anxiety and depression too, but I’d never been told these could be caused by the drug. I also experienced some minor darkening and shrinkage of my flaccid penis, but not enough to make me really worried, since my erections were big as normal. But then my sexual function got worse, and sexual sensation started to decline about two weeks ago.

I did more research and learned about PFS, and as you can guess, it was pretty horrifying. I stopped taking Finasteride 9 days ago. I considered tapering, but the idea of putting any more of that stuff in my body made me feel sick, and there didn’t seem to be any conclusive evidence about which method is better. Since then I’ve gone through some very emotional times. I’ve talked to my family and girlfriend about the situation I’m in, and they’ve been really supportive and accepting. I’m trying to stay positive and focus on the chance of recovery. The good news is that I can still have sex regularly, and the side effects overall have been pretty mild. Of course, my biggest fear is the dreaded crash and decline.

I could live with my symptoms as they are, although I would really prefer that they improve, but I don’t know what I would do if they go worse. Since stopping the drug I’ve been improving in sexual function and sensation, and my mood has been better too. However, I’m aware most crashes happen after 2-3 weeks of apparent recovery. Although my sexual function has been improving, I have experienced some mild insomnia, more anxiety, hot feelings in the groin, and prominent veins in my left scrotum.

It’s hard to tell if the insomnia and anxiety are from the Finst because I also stopped using cannabis at the same time to help my body return to equilibrium, and have been going through withdrawal. However, the hot feelings in my groin and the new veins are pretty ominous. At the same time, I like to think I have a good chance of recovering, although it’s hard to say exactly what my odds are. I’ve heard of people expressing new symptoms after stopping Finst and then going back to normal, and others get completely better before crashing months later. It’ll be a long time before I know for sure what the outcome will be.

In the meantime, I’ve been trying to exercise every day, eat healthy, and keep a good mindset. I’m encouraged by the recovery I’ve experienced so far, but at the same time, I’ve accepted the possibility that my symptoms will persist or get much worse. But I really don’t know what I’ll do if I experience a crash. I love my family and my girlfriend very much, but I can’t imagine having a sexless relationship with her, or living with the mental side effects and physical deterioration of my body. It was always my dream to be a writer and an artist, but the idea of doing that with constant mental fog, insomnia, and memory loss is just laughable.

It’s pretty terrifying to realize that the life I always thought I could have now seems to be in peril. To be honest, the thought of suicide is the only thing that comforts me when I think about crashing. But then I imagine the effect it would have on my loved ones, and I really don’t know if I could do it. At the same time, it’s not much happier to imagine them watching me slowly decline while in the prime of my youth, or being unable to have sex with the woman that I love. This has been the most fear I’ve ever experienced in my life. But if I do crash, I’ll do what I can to help others with the condition, and get the word out before I make that decision.

I’m willing to consider any advice about what to do in the cessation period. So far I’ve been using no drugs or alcohol, exercising aerobically and with weights, eating healthy, drinking lots of water, doing kegel exercises, limiting orgasms, and masturbating to erection once or twice a day to get the blood flowing and check my function. Things have been steadily improving so far, except for the new veins and hot feelings in my groin, but I’m aware this fits the profile of many crashes. I have an appointment with my doctor at the end of the week, and I’m trying to be patient and enjoy the health I have now.

Thanks guys, a lot of people have warned me to stay off this forum because it’s ‘negative’ or ‘pessimistic’, but in the threads I’ve read I’ve seen a lot of support and optimism which is a really beautiful thing. I’m not looking for a pity party and I’m not going to give in to the fear, but all advice and encouragement is appreciated.

2 Likes
#2

Welcome to the site! What you wrote reminded me of the quote from Mark Twain, “I’ve had a lot of worries in my life, most of which never happened.”

So far all you have it seems is relatively mild symptoms and a lot of fear. You are afraid you might get full blown PFS, which is understandable but premature. I can tell you cut the fear but I know it won’t work. So I am going to tell you that you have a very high chance of not getting worse and a high chance of getting better.

The important thing is you made the right decision to stop Finasteride. Another important decision would be to never start finasteride again no matter what. Consider yourself lucky so far.

5 Likes
#3

Thank you, I really appreciate the optimism.

#4

As @Sibelio says, the odds are in your favour.

I’m only posting because though he said that you should never use finasteride again, you should also be aware that SSRI anti depressants, natural 5ar inhibitors (saw Palmetto) and topical treatments that affect 5ar should also now be avoided as they are other ways people find their way here.

2 Likes
#5

It is very important stop alcohol and any other drug that are you using.
exercise and eat healthy, watch out there are many food and oils that are 5-alpha reductase inhibitor, there are also supplements like saw palmetto that are 5-alpha reductase inhibitor.
the vain in your scrotum can be varicolored what it happen to me.
In my case I go PFS a year later after I stopped, I took propecia for 11 months Janueary to november of 2006 I was 36 years old, after I stopped I was great for around 1 year or so, in 2008 when insomnia started ( waking out around 3 to 4 AM and not able to resume the sleep , I went to the doctor for regular check out, he found that my fasting glucose level was in the bottom line 109 for prediabetes, He sent me Ambiem PM that I stooped 3 days later for giving me hallucinations and I switch to Melatonin, also I noted that I wasn’t able to tolerate alcohol, my erections started to become weak although my libido was normal, also had some symptoms of depression but not anxiety yet.
in 2012, my symptoms started to getting worse, a very high anxiety begin, anhedonia, depression, total impotent, libido banished, I still don’t know if 2013 was worse or the same as 2012, 2014 no much different from the 2 or 3 previous years, 2015 started to improve, very little ( no much ), 2016 some improvement but the continue crash made so frustrated that I wanted to die I really want to end my life, but I didn’t give up, I guy from California contact me, he said that was recovered 99% after 10 year on propecia, but it took him 5 year to get better from PFS , and give some advised, After that, I started to take a lot of supplement that did nothing to me, but some time I believe that they were working maybe do placebo effect, I started running, meditation and fasting worked better than the supplements, 2017 I focus in fasting that I believe that was really what pushed my recovery symptoms, since then I started getting better and better at the point that I am happy with my life I am feeling normal again.
I made this history short, I know that I miss details, but the message here is that recovery can take a lot of mental effort and time.
Do not waste time and money visiting doctor, it will not help you at all, I spend ton of money visiting all type of doctors specialist, endocrinologist, neurologist, urologist, geneticist, general doctors, I only wasted time an money.
I hope that you will recovered soon, but if NO and you get worse, please do not commit suicide and remember my history.

2 Likes
#7

Thanks for the advice, I’m planning to stear clear of any new medications or supplements for now unless things get worse.

#8

It’s a shame that it can take so long to know if I’ll be okay or not, but I’m glad to hear you’re feeling better.

#9

Well it’s been 35 days off Finasteride now. I haven’t crashed, and my erectile dysfunction has improved a lot, but I’m probably only at about 70-80% of the function I had before. I’m hoping things will continue to improve over the next 2 months, and then I will update again. I’ve been lifting weights very frequently and continuing to eat healthy, and trying to get more cardio as well.

The sides I still have are mild insomnia, waking up 2-3x per night, but with Melatonin I’m able to fall asleep again when this happens. Getting an erection during sex has been so much easier, but in the past few weeks I’ve started occasionally going soft during sex. I still feel like I can’t get hard enough to do certain positions like cowgirl, and I lose erections quickly if I don’t start having sex. My libido and sensitivity have also improved, but not returned to their normal state.

For the first 4 weeks off the drug I was just getting better and better, but for the past 2 weeks I feel that I’ve gotten slightly worse again, although nowhere near as bad as it was a month ago. I’m hoping this is just the ‘zig-zag’ recovery pattern that many people describe. I’ve also been getting morning erections almost every day, which is the most encouraging sign.

Even still, I’m feeling a bit anxious about the recent times I’ve gone soft during sex. I’ve been doing a better job of controlling my anxiety, especially since I haven’t crashed, but I’m still afraid of things getting worse again. I got blood tests done and my testosterone came back high, my DHT mid range normal. Also had a good phone conversation with Dr. Irwin Goldstein. Just hoping for the best, and a full recovery soon. I’m not sure if anyone will even see this thread now, but wish me luck bros. Good luck to everyone else as well.

5 Likes
#10

You should try and put a stop to that. Even completely healthy men can have problems if they have anxiety and uncertainty in the bedroom.

It sounds to me like you’re on a positive road. (a positive road?! I think I meant moving in a positive direction and added in road to recovery).

2 Likes
#11

It happen to me in 2009, I was having sex and then suddenly get soft, loosing totally the erection, it was the reason for my first time visit to an urologist.
I never had that problem before in my life.
After that day it started to happen more frequently, by 2012 I was already totally impotent, the scary part was that I was recently remarried in December of 2011.
Libido vanished, panic attack, and extreme anxiety surge.
I still have that mark in my mind, even after recovered from those side effects, I think that I will never be recovered from the psycological impact of PFS.
I give thanks to God every day of my life for the wife that I have and for the support that she provided me every day. l own her my recovery and my life.

2 Likes
#12

It’s true, it would even happen occasionally long before I used Finasteride so it’s not really that abnormal.

#14

I just looked back at your first post and the timeline you talked about - it’s interesting that it took so long for your symptoms to develop, and it seems like you never really had a crash event where they appeared suddenly. It’s different from most other accounts I’ve read, but then almost everyone’s account is different.

#15

The problem that the symptoms appears slowly and you don’t even notice them, then you realized that you are fuck when you reach rock bottom, that is when the mental side appear, anxiety, panic attack … etc …also and you want end yourself, it is really a nightmare.

In my experience, I didn’t knew what was going on with me, I didn’t make the connection with finasteride (propecia) at the moment, I was looking for the cause of the problem and started to blame thing around me like maybe the deodorant that I was using, the soap, the water that wasn’t filtered, maybe my something in my workplace, maybe a Varicocele that I had at that time …etc…and because I stoped propecia long ago and I wasn’t making the connection with the real culprit of the problem.

2 Likes
#16

It’s now been 67 days since I took Finasteride. Overall, I’m a lot better, but still don’t feel like I’m back to normal. Sexual sensation is at 100%, I can even orgasm from oral which was never possible on the drug. I’m no longer afraid of going soft during sex or not being able to get it up. However, my libido is still low, and things just aren’t the same as they used to be. At one point I could have sex 3-4x in one night, now I’m lucky if I can do 3x, which doesn’t happen very often anymore. I’m still having problems with sleep, and have been on and off Melatonin, which does help a lot when I need it. My recovery seemed to plateau after 1.5 months or so, and I haven’t noticed much change since then. Overall, I’m actually very grateful, because things could be worse, but I still feel like this drug has left its mark on me. I can accept where I’m at, though. I’ll update again if I ever get back to 100%, or if things get worse. Thanks for the support and good luck to everyone.

2 Likes
#17

Wow man not even 3 months and that is already a very good improvement! Definitely keep us updated I’ve heard some guys go back 100% after 9 months or so, good that you stopped that poison. For now just avoid any supplements ect. and let your body slowly heal I think you have a good chance to keep getting better!

1 Like
#18

Thanks man! That’s true, my doctor said it should take 3 months max so that’s the way I’ve been thinking, but you’re right.

1 Like
#19

4 years for me…

1 Like
#20

It’s now been about 4.5 months since I stopped using Finasteride. Unfortunately, I’m still not 100% better, and my sexual function seems to cycle between improving and then getting worse again. I’ll go 1-2 weeks with almost no problems, and then 1-2 weeks where getting and maintaining erections can be a real struggle. Right now I’m in one of the worse cycles. My pleasurable sensation during sex isn’t great, and I’ve lost my erection during sex multiple times within the past few weeks. That being said, I’d still say my sexual function is better now than it was on Finasteride. However, the time when it was best (besides before using the drug) was roughly 3 weeks after I stopped. I still haven’t hit that high point of pleasure and erectile function again. I’m also not getting as many morning erections as I was a month or two ago. I got my blood tests done again, and my testosterone and DHT were about 15% lower than the May 1 test (650 and 29 respectively, vs 750 and 31 in May). They’re still within the normal range, but low for a 22 year old.

It’s been emotionally hard, as I was hoping to make a full recovery within the 3 month grace period, and it looks like that’s not going to happen. I might still get better in the next year or two, or this could be my new baseline from here on out. I suppose it’s also possible that I’ll get worse. It’s hard to see a trend in my sexual function over the past few months - I can’t tell whether I’m overall improving or declining, and if I had to say, I’d describe it as a sort of meandering plateau. One thing I’m extremely grateful for is that there have been no new symptoms - no testicle pain, no muscle loss, no difficulty urinating, no mental side effects. It’s seems entirely limited to sexual function. I’ve also been able to gain a significant amount of strength and muscle from weight lifting during that time.

Yesterday I went to see a urologist in the hopes of getting some advice on what else I can do. Luckily, the doctor was knowledgable about PFS and strongly anti-Finasteride. He told me there’s nothing he can do to reverse any damage Finasteride caused, but he did have some good recommendations that I’d like to implement. He suggested that I completely abstain from watching porn, limit orgasms (from masturbation or sex) to only 3/week, get regular exercise, abstain from marijuana and alcohol, and use a supplement such as Neugenix or Megaman to increase free testosterone. He also prescribed some low dose 20mg Sidenafil, which I haven’t had the opportunity to try yet. I’ll report back about how that works. I’m definitely glad I found a good doctor who’s sympathetic to the condition.

Some other comments: I’ve tried using marijuana again a few times since I quit Finasteride, after the 3 month period was up and my sex function was in a good period. One night after smoking weed, I tried to masturbate and got an hourglass shaped erection. It looked like there was a band around the middle of my penis under the skin. That really freaked me out, but when I continued masturbating I managed to get a full erection and the hourglass shape went away. After that incident I decided to put off trying weed again for a few more months. The urologist checked my penis and testicles and said that there weren’t any plaques, but that my testicles are a bit small for my age. I honestly cant remember if they used to be bigger. But I’m guessing that means the hourglass penis shape is not due to plaques, but has something to do with bloodflow. I also strongly encourage anyone who thinks they’re getting better to hold off trying weed or alcohol again until they’re really sure.

1 Like
#21

That’s awesome that you have a supportive doctor. Who is this urologist who is vehemently anti-finasteride? We keep a list of physicians who accept PFS to prevent members from wasting time and money. Not that they are typically successful with treating this condition, but even band-aid treatments for particular symptoms are a godsend for some.

3 Likes
#22

Dr. Bruce Thompson of Kaiser Permanente San Diego. I told him about this forum as well and he said he’d check it out.

2 Likes