How I ruined my sexuality and my life

#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)?

US

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?

28, 5’10" 170 lbs

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

Use finasteride, minoxidil and ketazanole

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?

1mg per day for 3 weeks - stopped for 1 week then used for another week

What condition was being treated with the drug?

MPB

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

A month

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

age 26 when started, July 2016

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

August 2016

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

Cold Turkey

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

2 Days

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

Penile Shrinkage, Difficulty having orgasm, Lack of pleasure from sex, penile pain, peyronie’s disease, anxiety, lack of morning erections/spontaneous erections, lowered libido, lack of motivation, lack of joy for life

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
[ x] Watery Ejaculate
[ x] Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
[x ] Emotional Blunting / Emotionally Flat
[x ] Difficulty Focusing / Concentrating
[x ] Confusion
Memory Loss / Forgetfulness
[x ] Stumbling over Words / Losing Train of Thought
[x ] Slurring of Speech
[ x] Lack of Motivation / Feeling Passive / Complacency
[x ] Extreme Anxiety / Panic Attacks
[x ] Severe Depression / Melancholy
[ x] Suicidal Thoughts

Physical
[x ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[x ] Penis curvature / rotation on axis
[ x] Testicular Pain
[ x] Testicular Shrinkage / Loss of Fullness
[x ] Genital numbness / sensitivity decrease
[x ] Weight Gain
Gynecomastia (male breasts)
Muscle Wastage
Muscle Weakness
Joint Pain
Dry / Dark Circles under eyes

Misc
[ x] Prostate pain
[ x] Persistent Fatigue / Exhaustion
[ x] Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
[x ] 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?

Cialis 5-20mg as needed, Penile Doppler, Amino acids, Emergen-c, DHEA, Pregnenalone, Pro-hormones

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.

Today is my birthday. I am 28 years old. In July of 2016, I began 1mg of daily finasteride for the treatment of male pattern baldness. I walked into my Harvard educated dermatologist’s office to have a standard procedure of getting a few moles removed. After the removal, he had taken a look at my hair and waited for the female assistant to leave the room. “you know, I didn’t want to say it in front of her, but have you noticed hair loss?” I was a bit offended, as a few weeks prior I got into an argument with my girlfriend at the time, and she made a snide remark about “atleast she’s not losing her hair.” I was shocked - I never noticed any sort of hair loss at the time. I looked closely at my hair in the mirror. Sure, my hair wasn’t as thick as it used to be in my teens but I didn’t notice anything alarming. I said to the dermatologist, “yeah, that’s what I heard.” He said “well, its not so bad right now - but i’d hate to see what it looks like in 5-10 years.”

Before leaving, he handed me a prescription for 1mg daily finasteride. “I’ve been taking it for 15 years,” he he mentioned. Looking back now, I had wondered why he seemed so robotic in his speech and movement during my visit. Afterwards, I went to work. Once I made it in, I made a few simple google searches and found a large amount of information regarding propecia. While the information was conflicting at best, I had come across a few legitimate looking websites, including this one. Within 5 minutes, I had learned that this drug apparently had the potential to obliterate most men’s sexuality within weeks. I laughed. I thought it was the biggest joke ever that I would ever intentionally ingest a drug that had even the slightest possibility of ruining my junk. I nearly threw the script right in the trash. Thought, I didn’t. I kept it. It was tucked away in my drawer and for weeks, i researched the drug.

I tried to find any confirmation bias the I could. After all, my hair was very important to me. I’ve always been a good looking, athletic young guy. I had the potential to do just about anything I wanted. For every negative story I read, I read another one saying that it was a miracle drug and it saved their life. I was torn. On one hand, I wanted so desperately to keep my hair. I was told growing up that I was so lucky to have such a full head of hair and always took it for granted. I noticed everyone on propeciahelp was a total hypochondriac and everything seemed going wrong in these guys life seemed like they used this drug as an excuse. I visited other sites again, to find someone who had more good things to say to affirm my beliefs. Despite everything negative I read, i refused to believe that there was any sort of possibility of long term or even more unlikely, permanent effects. I decided then, I was going to start 1mg daily and see how things went.

I finally went to the pharmacist and filled my script. Expensive I thought, but that just means the demand is high and it works. I took it home and eagerly ate my first pill. “Fingers crossed” I thought. I had been at work all day and was tired, and decided to take a little nap. I lay in bed and fell asleep. A couple hours went by. While I was dreaming, something odd happened. My eyes popped open instantly, I was wide awake. I was very confused at first, I’ve taken naps all my life and there have been times when I wake up groggy, or wake up energized, but it was always gradual either way. I had never felt like this before. It felt like a switch was turned off in my brain, a switch that let me have restful sleep.

After a few moments, i remembered today was the day i began finasteride. I thought it was strange for sure, but hadn’t noticed anything else besides that.

The next day I woke, nothing out of the ordinary. I read online it was a good idea to dose the medication around the same time each day. So, I waited until 24 hours had passed and ingested my second pill.

I had continued this for several days, maybe a week. I began to notice some side effects. First, I couldn’t figure out why my stomach was hurting. It felt a bit like nausea, but mostly like someone had hit me in the nuts. I had researched the hell out of finasteride before taking it, and if there was anything consistent in most stories, it was the infamous ball ache. I knew then that this is what I was experiencing, but it wasn’t life changing, just a minor annoyance, really.

The second week is when things started to become even more bizarre, Within two weeks of daily 1mg finasteride, I started noticing a couple things. First, I noticed sex with my girlfriend was different. Not horrible, but my dick had definitely not felt as sensitive before. Hm, i thought. Definitely propecia related, but its a price I’m wiling to pay for hair. At work, I started having hot flashes. On the way to work it felt like I was sitting on my balls and was in pain. by the time I walked up to my building I was in a hot flash as my hormones felt on a roller coaster. Life felt a bit different, but not necessarily in a bad way.

On my third week, this is when things really started to get out of control. I had gone to the local pub for happy hour with some coworkers. While I’m probably a little naturally introverted, I always enjoy going out after work and soaking up the atmosphere. Though today was different, I had been talking to a few coworkers while out and realized that I had no interest in being there. Come to think of it, going home and relaxing didn’t sound appealing either. I came to the conclusion I didn’t even feel like I was a person at that point, I felt like some sort of ornament or decoration. I had no interest in the females there, I had no interest in talking to any of my friends.

After I went home, I went to sleep and woke up the next day with no morning wood. Again, I knew this was a possibility with finasteride. Morning wood was always kind of a pain in the ass, anyways I thought. I tried to watch some porn and wack it for the hell of it, and realized I just wasnt into it. And neither was he. I realized at this point that something super fucked up was happening, and decided to quit cold turkey.

I went at least a week if not more without taking it. Things slowly seemed to balance out and I started feeling myself again. It wasn’t until after that I had realized how insidious finasteride was and how much it had changed me without me realizing it. Despite that, I had went back online to find the confirmation bias I needed for me to start taking it again. “Just let your hormones balance out - it takes time” one member posted. I read several instances of people saying they had side effects for a couple weeks and then months later everything was back to normal.

So, within 2 weeks of quitting cold turkey, I went back on it. Within 4 days, side effects came roaring back with a vengeance. The ball ache was unbearable, morning wood was nonexistent, and I was having extreme hotflashes and anxiety. I said “fuck this.” and quit again cold turkey.

For the next two weeks, again, i was slowly starting to feel back to normal again. On the 14th day, I went out with some friends on a Saturday night. We were at a crowded bar and there were attractive females everywhere. One of my buddies had got the number of an absolute perfect 10 there. Though, I had seen this before. A guy gets a girls number instead of pursuing her, for some reason. So, I decided to take it from here.

I began talking to her and somehow, she was super into it. Sometime during the conversation she started dancing with me. I realized something though. I wasn’t into it. She was about as attractive as I could imagine, and yet it felt like something was wrong. I kind of just chalked it up to something else and went on with my night.

The next day, something happened. I woke up in a panic. It was like before my eyes had even opened, I was having the worst anxiety of my life. I woke up and realized my dick was absolutely dead. It was cold, shriveled, and lifeless. I had the worst confusion and anxiety I ever experienced. I woke up and started crying because I couldn’t figure out what was happening. I turned on a porn thinking it was just in my head and I’d be fine. Nothing. I looked at myself in the mirror and it felt like I was looking at a stranger. I had read awhile back about the infamous “crash” that some people claimed to have. All of the stories came flooding back into memory, and I realized I might be fucked.

I was so terrified, I decided I needed some endorphins or anythign to take my mind off of what was happening. I got in my car and drove where the was a stretch of road and started taking off into a full sprint, something I had done in the past when i needed the dopamine that it provides. Every time my foot hit the ground, it felt like my balls had 20 lb weights attached to them, and each step I felt the pain radiate into my stomach.

I hunched over myself and started crying in the middle of the road.

For weeks, this continued with no signs of improvement.

I was at a loss. I couldn’t believe this was happening. All the hypochondriacs were right, I thought.

For the next several weeks and months, I tried my best to stay calm. Members of propeciahelp said to others “give it some time, after 3 months most issues resolve.” It gave me some reassurance. I thought “ill just give it some time, my body is strong and I am healthy and eat well.” But for weeks, things seemed to stay relatively the same. After about a month or two, i noticed some improvements. The strangest thing, was that some days I woke up feeling almost normal, with everything feeling just fine. Then I would wake up the next day and it was like a switch was turned off. Everything came together, the mental fog, the anxiety, the ED, the lack of libido. It was a package deal. For months, this is what life was like. either feeling relatively normal or absolutely nightmarish.

After about 4 months, i started having pain in my penis. I was used to the daily ball ache, but this was different. It was actually in my dick. It didn’t matter if it was flacid or hard, it was very disturbing. About 6 months in, I woke up one morning and looked in the mirror. My dick had a fucking kink in it. not a natural curve, like it always had - a fucking kink like a hose that got bent entirely. I knew that peyronies was something that people had dealt with - but 6 months after cessation ? what the fuck? I was devastated. I couldnt believe now I was having physical disfiguration this long after stopping. Sex became pretty painful, it was not very enjoyable before but now, even if I could get hard, it was painful and I didn’t have much sensitivity. Even if i could orgasm, there was no pleasure when it actually happened. So, within 6 months I had felt at an absolute loss.

I started making visits to urologist and other doctors. Long story short, nobody has been a help. I have a prescription for cialis to help with the peyronies. I took several blood panels, mostly everything had come back relatively normal. My t was low for my age, my urologist mentioned Clomid could help, or Wellbutrin to bring things back online. I was petrified to take anything else that could possibly make me worse. At this point, I had lost all trust in healthcare providers and big pharma.

I had read several members stories on here saying clomid and wellbutrin didnt help - if anything made things worse long term (eye floaters, anyone?"

Fast forward to today - because this shit is hard to talk about as it’s still very much a real part of my life. I have had major improvements. Brain fog has improved, I sometimes get morning wood, very occasional spontaneous erections. Sex can either be about up to 85-90% as enjoyable as it used to be, though i would say on average its about 55-65% as enjoyable as it used to be. I’ve had penile doppler done, which showed no scarring at the time, and exceptionally good blood flow according to my uro. I have a MRI appointment set up to gain additional insight as well. Unfortunately, My penis is not the same. I have what seems to be a permanent alteration in its aesthetics. It is shaped like an hour glass, there is a band around the middle that never existed. It - in general, is shrunken both flacid and hard. There are occasional times when I get hard that it looks almost like it did when it was normal. So there may be hope there. I have a tough time visualizing sexual thoughts, I don’t have libido like I used to, which of course affects my motivation in everything else in my life. Cialis provides Nitric oxide which seems to help. The peyronies is definitely not as bad as it once was, but its still not back to normal. I’ve tried many different supplements including riskier things like pro-hormones and DHEA/Pregnenalone with no real benefits i’ve noticed.

I’ve been taking a daily whey protein shake with non-essential and essential amino acids which, in my opinion, is the most consistently helpful thing I’ve done. Emergen-c also seems to be useful, but not consistently. I’m taking each day at at time, awaiting information from Baylor to decide if i want to continue on this journey - because honestly, if a full recovery isn’t possible, it’s very much likely I will have to decide on alternatives.

Edit: Thank you guys for the responses. I can’t tell you how much i appreciate it.

I’m sure i’ve left a lot of stuff out but I wasn’t really planning on writing this today - hopefully I can add in more later. I’m here a lot so if anyone has any questions about my story I’m happy to answer.

Thanks.

7 Likes
#2

You sound just like me my friend, it does get worse but you’ll hang in there. I believe in you.

I would recommend making sure you get a lot of sleep. And make sure you exercise regularly. Have you tried a fast yet?

2 Likes
#3

Thanks. I do intermittent fasting, occasionally, but I haven’t committed to a water fast yet. Have you?

#4

I have, it helped early on. It really jacks up your growth hormone which can help. I’m currently trying soyflour and seeing how that works. The idea here is that it can downward express the AR receptor which has been proven in men with PFS to be very over-expressed. Hopefully it will downward express to the point that my DHT starts working as it should again.

2 Likes
#5

Wow, I can relate to so much of your member story its scary. The way you vividly describe it too brings back such clear memories of when I started this bullshit. Thanks for sharing, I’m right there with you and have also found that treating with aminos and protein is the most effective way thus far.

#6

Hey @trav,

This is a true tragedy. I don’t even know how to tell you how sorry I am. People who don’t have PFS won’t ever understand the true magnitude of the catastrophe this condition causes in a man’s life.

A very similar thing happened to me as well. I got PFS after re-starting Propecia after being off of it for months. I was losing hair very fast and I thought I should get back on finasteride so I can taper it more slowly. Even though I had read PropeciaHelp, I thought I was invincible and PFS could never happen to me, and yes - I also didn’t quite believe what I was reading.

Thank you for writing your story! It is definitely going to help many people who are wondering whether to start Propecia and I am sure it will end up saving lives.

I sincerely hope you continue to improve. Your symptoms don’t sound as bad as they can be.

2 Likes
#7

Reading these stories makes me so angry that such a bizzare, fucked up disease even exists.

1 Like
#8

@trav Did you go back to the Harvard-educated dermatologist to tell him what he had done to you?

#9

I am angry not at the disease, I am angry at the people who created it and continue to spread it every day, knowingly destroying and killing thousands of innocent men. I am also angry at the people who deny and try to silence the truth - at Wikipedia, at hair loss forums, in the medical community.

4 Likes
#10

Well obviously I can’t blame anyone cause I got this disease from natural OTC supplements (soy, licorice, milk thistle). So I’m even more angry cause I didnt even took a drug, yet still have to deal with this bullshit.

1 Like
#11

Hi Trav
Thankyou for taking the time to write your story I too can relate to so many parts of it it’s unreal
I’ve been on this road for a long time i think things were a little more confusing for me to start with as i was using finasteride anabolics and high doses of ibuprofen at the time so i wasn’t sure if it was partly the steroids or the combination of all three the whole experience started just like yours and continues to this present day.
It’s all a roller coaster from hell it starts from the top when you realize something is going wrong and swiftly spirals out of control dragging you down into hell where it stops to leave you in that shocked state of confusion and despair feeling half the man you once were.
I cant understand how a drug can take away so much from guys creating a catalogue of sexual issues and mental issues that the medical profession can’t help with.
It’s all beyond belief.

4 Likes
#12

Same to me. It proves that it is more likely to develop PFS when you play with dosis or take- then stop then take again…than just taking finas during a long period of time. That is, i think, because the body cannot manage such an hormone imbalances.

1 Like
#13

This.

Your story shows that although we are getting the word out and people are coming to the site prior to taking finasteride, as long as it is still readily available and the labelling remains inadequate, there will always be more men falling victim to this drug. I pray for a time that this is taken off the shelves or at the very least black boxed.

5 Likes
#14

I crashed on ketokonzale/saw palmetto shampoo alone. I feel you man, I’m 23 and my life is very dark right now. I have very similar sides to yours and many others on the forum. I hope to god there’s a breakthrough with this PFS and all of us can go back to normal or be treated. I’m on TRT almost been 4 months with really no improvement. I’m not worse but I’m not better which is crazy my body is androgen resistant at this point. These 5AR inhibitors are truly something else, I can’t believe it doesn’t effect 100% of men who take them after knowing what it’s done to all of us! Hang in man I have good hopes something will come along eventually. I believe all 5AR inibitors should be taken off the market for hairloss I hate seeing so many guys falling victim to this…

5 Likes
#15

Respect for posting your story here, I can relate and your story sounds similar to mine. I hope you can find a way out!

#16

The thing pisses me off the internet is full of the horror stories that we have been through most of them are more or less a carbon copy of each other the same symptoms the same issues the same cause yet we are all more or less ignored by the drug manufactures and medical world it just doesnt make any sense…

1 Like
#17

This is why it’s important that we assemble here, that as many people as possible sign up, take part in the 23&Me project and take our survey when we publish. Every registered user will receive an invitation to the latter. There’s a thread about the former here:

If we have a large enough group that we can point to we will be able to be taken much more seriously.

These are the first steps to our liberation but everyone needs to do their part on the way.

Anyone reading this who hasn’t registered here, I urge you to do so. It’s free! It takes 30 seconds.

3 Likes
#18

I think where we are now is different to a few years ago. If you consider the rxisk.org site or even the greater awareness of post selective serotonin re-uptake inhibitor sexual dysfunction, not forgetting what has and is being achieved both with the foundation and here. Sadly there are myriad victims of numerous pharmaceuticals that in isolation go under the radar with their own personal despairing experience. The system is definitely failing patients and horribly skewed towards the monetary gain of big business, but the fact that connections between certain patient groups are being made and scientists etc. are working towards a common end will hopefully make all the people who have been affected by endocrine inhibitors be heard.

7 Likes
#19

invictus can you explain how you got pfs from milk thistle ? i thought pfs occurs because of reduction of a hormone that comes back quickly after quitting. my problems started after quitting.i thought there must be a upregulation of the androgenreceptor to get this rebound effect. sometimes i think this problem is so rare that i have something else. i get fucked up because of the german hair loss forum that recommended to cycle propecia. otherwise i would have never get it. sry invictus for my previous post. i believe you …

#20

Thank you guys for the replies. It means a lot. I’ve read hundreds of stories on here but, the nature of this illness is obviously super personal and hard to discuss. Particularly when you are still going through it.