Unexpected Life Changes

Member Stories
#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)? USA, Florida

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?)
I’d heard of this site before, but came here today because it was mentioned in the Reddit FinasterideSyndrome subreddit by someone tonight.

What is your current age, height, weight? 49, 6ft, 155lbs.

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.)?
I started at 1mg/day, then cut to half, then cut to quarters. I took a total of almost 270mg and then my erectile system totally collapsed a few days short of 13 months on the drug.

What condition was being treated with the drug?
Hair loss on my head.

For how long did you take the drug (weeks/months/years)?
A few days short of 13 months.

Date when you started the drug?
October 1st, 2021

Date when you quit the drug?
A few days before November 1st, 2022

Age when you quit?
48

How did you quit (cold turkey or taper off)?
I guess you could say I tapered off because I was only taking quarter pills for the last two months.

How long into your usage did you notice the onset of side effects?
I had side effects by six months.

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

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
[ ] Emotional Blunting / Emotionally Flat
[X ] 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
[X ] 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
[ ] Increased hair loss
[ ] Frequent urination
[X ] Lowered body temperature

[X ] Other (please explain)
I’m really surprised this isn’t here: Insomnia. I slept 8 hours per night every night of my life. If I was short one night, I’d always make it up over the next two nights. Now I sleep just as regularly, but it’s 5.5 hours per night. 2.5 hours less every night since my erectile system collapsed, for 4.5 months so far. It’s not getting better. It’s staying exactly the same. I’ve even tried forcing myself to stay in bed. My body just doesn’t sleep like it did before.

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
I got a Urologist and he has me taking 5mg/day of Cialis just to get blood flow down there. The truth is that I’ve been really spotty about it. I would not say that it’s doing anything. I do see the logic of maximizing blood flow there. I am wary of any penis-affecting drugs at this point.

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)?
My total testosterone was 482 four years before I started Finasteride.
It was 559 when I’d been on Finasteride just over 6 months.
It was 257 five weeks after crashing.
It was back to 371 by three months off of Finasteride.

Anything not listed in the above questions you’d like to share about your experience?

I told my doctor that my penis had shrunk while I was on Finasteride and she said to cut my dosage and not worry about it. I feel dumb now for not freaking out more about it. Her total lack of concern about it made me think that there was truly nothing to worry about. I wish I’d stopped then. I feel stupid for staying on it six more months until I lost all erectile ability completely.

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

I watched a hair transplant surgeon on Youtube, Dr Gary Linkov. He insisted that hair transplants should happen alongside drug therapy. He said that Finasteride is safe, and that people can cut their pills in half, or even in quarters if they have side effects. So I signed up on Keeps.com, I got a discount on my first pills. My doctor kept encouraging me despite my side effects. The truth is that I didn’t report every side effect because I was under the impression that erectile problems came with the territory, but went away in 30 days if I ever decided to stop. I was distracted by the red herring of my hair while being told the sexual stuff didn’t matter because my dosage was “super low.” I finally decided to stop taking it when my testicle pain was just too much and too constant.

The second evening after stopping I felt my penis detach. I could not get any sexual reaction at all out of it for 25 days. My Keeps doctor assured me that I’d be 100% normal again within 30 days. On the 26th day I was able to get my first erection-like behavior out of my penis. On the 35th day I saw a Urologist. He scoffed at my story and said he’d never hear anything like it, especially at the microscopic dosage I was taking. He said I would definitely be 100% cured in six more weeks and that’s when he gave me the 5mg/day of Cialis. He also did some blood tests. That’s when I got the 257 number for total Testosterone.

When we had the 8 week follow-up (he was on vacation at six weeks) he said the 257 number is too low, that the real reason for my problems was that, and he wanted to put me on a drug, I can’t remember the name right now, but it’s to help women ovulate but also, he said, causes men to produce more testosterone. I told him I didn’t want to get on another drug right away. He said to wait three more months and we’d talk again, but that he couldn’t imagine any other outcome than me getting on that drug at that time. We did blood tests again then (early Feb) and I’m scheduled for the same blood tests just before our early May follow-up.

Already my blood tests show my numbers coming back to normal. I’m really glad I didn’t take his additional drugs. My penis and ball still ache a LOT, a LOT of the time. I don’t feel sexual arousal anymore. I still feel attraction, but not arousal. I have no morning erections. Six months ago I was still having really strong morning erections, to the point where I had to masturbate to get it to relax so I could pee. Now my penis is shriveled and tiny. It requires a huge amount of manipulation to get any kind of hardness at all. The orgasm is mechanical and pleasureless. The ejaculate is watery. I didn’t realize how much hope I still had for finding a wife and having kids, and how quickly that could all go away.

My first month without a penis I had REALLY strong suicidal ideation. After a life where that sounded ridiculous to me. I know it was physiological, I think it was a reaction to my major pleasure center being disconnected, because the intensity was so high for the first month, but then really subsided after that. I still think about killing myself all the time, which is so weird because I’m just not that guy. But, especially on the days when my penis and balls REALLY hurt, dying sounds like it would just be a release from pain and not missing any happiness.

At 4.5 months I don’t know what to do. I still wake up and go to sleep enraged about my situation. I’m constantly litigating this in my head, arguing with both of my doctors in my head. Fantasizing about punishing drug manufacturers in my head. Part of me wants to do something to stop this from happening to people. Another part of me wants to stop engaging with this topic that only causes me pain. I do feel like my life was ruined. I’m really concerned about the fact that I only sleep 5.5 hours a night now instead of 8 hours before. How much did this fuck up my whole physiology beyond just my penis? I wonder how many years have been taken off my life, in addition to the option of a really happy, sexy marriage that I still thought was coming.

With all of that said, I think I’m going to accept it, try to find the best in it, and move forward. I do think I’m going to do something to help. At the moment, my current maybe-target is trying to get the PFS Wikipedia page helped, maybe. I don’t really know. I’m still so hurt, so angry. I haven’t told most people, and that’s partially because the people I have told have been no help at all. When did EVERYONE suddenly become experts at my erections? No, it’s not my blood pressure. No, it’s not psychology.

So, weirdly, I’ve been coming to the forums more and more. And, weirdly, it helps to scroll through the lists of guys talking about killing themselves. Five months ago I would’ve never, ever believed that I could be here. And here I am. I hope you guys don’t actually kill yourselves. I’m going to keep considering it, but I would definitely take people with me if I went. But, I don’t intend to go that way. With the pathetic mess that is left behind, I’m going to keep working on my projects and maybe my friend group is now guys who talk about killing themselves on forums. Maybe that’s just my life now. It still really angers me to acknowledge any positivity that came from this event, but I do feel really connected to all the shared pain here. I get it. I want to die too.

4 Likes
#2

Been stuck with this since I was 22 and I’ll be 28 soon and I continue to get worse. I simply don’t have the courage to end my life otherwise I would have a long time ago. I feel everything you’ve said, these pharmaceutical companies are evil and will stop at nothing for profit leaving people maned with this crippling condition. The online vendors selling these hair loss products are ruining so many lives and they will deny it.

Sorry for what has happened to you.

2 Likes
#3

Hi there @PeaceHugs

I just wanted to thank you for sharing your story with the forum and I’m really sorry about what has happened to you including your experience in trying to seek help with the side effects from finasteride use. There will come a time when so called doctors will be unable to treat their patients in this way as PFS will be recognised. It is a tragedy in itself that so many Doctors seem unable to think outside the narrow confines of their prescriptive tendencies and actually utilise their alleged knowledge to be open to the possibility that what their patient is telling them may actually be true and that it is indeed possible. It really saddens me to read that so many alleged doctors seem no better than snake oil salesmen, seemingly making science up on the hoof (like somehow a lower dose will minimise side effects when finasteride is known to be equally as powerful at very low doses) for what obstensibly appears to be to casually reassure, all while abusing the reassurance that a white coat gives. Anyway, that’s my own rant out the way. I just wanted to say that what you wrote was very powerful and really conveyed how the situation of so many men whilst we are still in this grey area of there being an awareness of potential side effects, but not the true extent. Some in the medical community just now, particularly in the hair loss industry, will continue to exploit their position as so called experts whom we trust when in fact a lot are clearly ignorant or willfully ignorant of the true picture for their own vested interests. I’m sure that you have a lot to contribute to help redress this. Are you aware that more studies are already underway, organised and funded by PFS patients like yourself, and that many patients are active in raising funds for the next stage of studies? There are things that can be done to help move things forward so as what has happened to so many can be fixed in the future.

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#4

Just to clarify, Clomid is the drug that my Urologist wants me to start taking. I’m not going to do it. Saw it mentioned in another thread and it reminded me of the name of it.

1 Like
#5

Sorry to hear what’s happening to you man. I can definitely relate to a lot of your words. I have some bad shrinkage myself which by itself is depressing. I’ve spoken to many pfs patients who struggle immensely with insomnia and know how difficult it is.

Try to hang in there. We have scientists working on this and there is hope for the future.

1 Like
#6

yeah stay away from Clomid

just ride this out. research making progress, technological advancements are happening, and we may possibly have solutions to all this really soon, depending on how the research goes.

hang in there

ive been dealing with this for a while and ive gotten worse in some ways, better in other ways. no reason to kill myself now, i keep telling myself if i get better ill be able to appreciate life 100x more than the average person

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#7

Love that attitude. I can honestly say I’ll wake up in and experience pure euphoria everyday for the rest of my life once’s I’m cured.

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#8

This is my six month update.

My penis detached on November 1st, 2022. It was in the cold-pool totally-turtled state for almost a month. My sleep each night went from 8hrs/night to 5.5hrs/night on the same day. I had shockingly strong suicidal depression for the first month, which was 100% out of character for my whole life before that. My prescribing doctor at Keeps insisted that this must be unrelated to Finasteride, which was ridiculous. I started seeing a local Urologist and he also insisted that Finasteride is totally safe and doesn’t have these affects.

Since then I dug up all my testosterone results. Before Finasteride my total testosterone was 482 ng/dL. When I’d been on Finasteride for 7 months it was 559. At five weeks after my penis detached (five weeks without Finasteride) it was 258 (with the low end of the range being 300, so my Urologist wanted to put me on Clomid to get it back up, but I declined). At three months off my number was 408. Four months: 371. Now six months: 368. ------ So, SUMMARY: I was 480 before Finasteride, dropped to near half of that after Finasteride, but had recovered all I was going to recover by three months after, which is about a 25% total, apparently-permanent drop in Testosterone.

I was a very, very sexual dude before my penis detached and that’s gone now. I can still feel sexual attraction, but not arousal. I can technically get erections and have orgasms, but the circuitry that made it automatic and exciting are gone. It’s a huge amount of work to get my penis hard, it’s weakly hard, and it quickly ejaculates and it’s over. I haven’t tried, but I don’t think I could have sex even with a very understanding lady, which is also the polar opposite of my life up until detachment.

My penis and balls hurt a LOT for the first five months after quitting. I couldn’t focus on anything because the pain was so intense, even right up to before my five month anniversary of quitting. They’re still tender, but the constant feeling like I’d just been kicked in the crotch is gone now. I really hoped that all that pain in my penis and balls was healing. Now I can clearly see that it was still cell death. I have the tiniest, most pathetic penis ever now. If I want to rev up my negative feelings, the way to do it is to have my penis out. It’s shocking how much it changed since even a year ago. Every time I pee I’m surprised at how tiny it is now. SO MUCH tissue death.

At five months my sleep recovered a little. I suddenly was sleeping an average of 6.25 hours a night instead of 5.5. It’s less regular, It bounces around that number and I still get lots of 5.5 hour nights, but I’m finally sleeping a little bit more. I didn’t have sleep problems for my whole life before this.

Maybe the most important recovery is that I don’t have such a strong baseline feeling of gloom and negativity anymore. I can still get really upset, but the physiological part of the negativity has way, way reduced. I’m a sunny, reflective, positive dude by nature. It was REALLY clear that all that pain was physiological and not psychological. From the very beginning I was trying to see the upside of it all, but I also really, really wanted to die to end the pain too. I was also really disappointed in doctors, the FDA, and drug manufacturers for not doing the absolute basics of their jobs to watch over me. So part of my pain was being shocked into the reality that they’re all incompetently and maybe knowingly destroying mens’ lives for pennies. But the six months of pain was obviously physiological from the inside. For anyone still feeling that weight, I can tell you that it eventually subsided for me and I mainly only have to deal with the normal suckiness of life without a penis now.

I would really like to join the fight, the research, and the marketing to resolve this very stupid situation. But, I can’t do it. I already had a really full life. I already have projects that require 100% of what I can give them. For me, at least, this whole topic is so negative, it’s so much resisting and fighting, it puts my brain in such an angry state, that I can’t live that way. So, my way of dealing with this is to radically accept the shitty roll I got and keep working on my life projects. I don’t know if that’s what forgiveness is. I’m just choosing to ignore the people who had positions of responsibility to protect me, who instead pushed me into something I didn’t go looking for, who got to keep my money and now never think of me at all. I support all of you who are taking tiny and huge actions. I can’t also take this project on. I’m so saddened by this turn in my life. When I focus on it I want to die. And I spent a lot of months wanting to die. Now, six months out, I get excited about unrelated things, and I’m going to embrace those as much as I can, because there’s still lots of downtime between positive moments.

I feel like my life left is limited. If I were to really engage with Finasteride as a project, I’d start with trying to find a researcher who does rat studies and test how Finasteride affects longevity. Am I going to die early, maybe because I still sleep 25% less than I did for my whole life? Or, by some miracle, does having low Testosterone extend life maybe?

My hair is slightly better still than it was before Finasteride. I think I would murder a Finasteride rep who tried to tell me to be grateful for that, but it is also factually true.

I told one of my buddies about my situation, and his wife had something similar where she got so damaged when her first child was born that she, a former sex maniac, just can’t have sex anymore. She still has a life, she’s still making the most of her existence, and her sexual hardware was destroyed. At this point, if I do pair up, it might be with a girl in a situation like that who is just as certain that no guy would want her anymore either.

I did have a sperm test and I still have the bare minimum sperm quality to have kids. That is a relief. Because I do want kids.

I just cancelled my six-month follow-up with my Urologist. His solution is Clomid. I don’t want to take another drug that he assures me is safe, especially since he still thinks that Finasteride is safe too. Based on the other experiences on this forum, it doesn’t sound like Clomid would do anything anyways.

I still do hold a little hope that maybe the next year will bring some minor healing. My overall impression is that the healing is more psychological as people settle into their new lives. It’s relieving to hear that HCG seems to give people improved results for two months before stopping working (is my impression). The fact that anything can positively affect sexual hardware means that maybe there’s hope for something good in the future. It’s super awful that this happened to us and that the people who did it just keep doing it. I’m going to try to make the most of what I’ve got left of my life.

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#9

Weight lift and incline cardio/ rope jump, and steak diet. Early bed. It Will help the mental issues. And fight ur own mind.

Important donate monthly to PFS network. Their researcy is breaktrough and they need ur fundinga

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#10

This is my one year update.

My penis hurt all of the time for the first five months after I stopped. It was still shrinking too. What I have now as a penis is a shockingly pathetic shadow of what I had before this drug. It takes a lot of manipulation to get any kind of hardness in my penis. I do not have anything even close to morning erections. Before this I had them every day, and they wouldn’t go away either unless I masturbated to orgasm. Now I still feel sexual attraction, but I don’t feel the body feeling of arousal. I can get hard and have an erection, but it’s pathetic, happens quickly, and doesn’t have the corresponding feelings of tension and release that it had before. My sperm is now all watery and much lower volume. I did get a sperm analysis which said I can still probably have kids, which is great.

One thing I’m surprised isn’t talked about more here is the insomnia that comes with this. I know I’m not the only one, but when I brought it up here people didn’t have much to say. I’m not sure if other people just didn’t watch their sleep enough to know the difference, if people already had sleep problems so they couldn’t see the difference, if people just aren’t speaking up, or if many of you didn’t get this side effect. I slept 8 hours every night my whole life, totally fine. I had zero sleep issues for my whole life. The day after my penis disconnected I slept 5.5 hours each night for the first five months. I forget the details exactly now, but it really worried me how much my physiology changed. At a year I now sleep somewhere between 6h45m and 7h a night. I’m SO GLAD that at least some part of that came back.

I do still wake up every morning angry at the doctors who did this to me. The doctors who I told I was having problems who reassured me that I was safe. The doctors who immediately said there couldn’t be a connection when the inevitable results of taking this drug happened.

I don’t log in here and I don’t read messages anymore. I spend enough time upset. I really appreciate everyone here. I’m really glad that you didn’t kill yourself. Part of me wishes I could contribute more, even just to the love in the community. But I’m so angry so much of the time. This was so evil and just nothing is happening. I’m sure my three doctors have all forgotten me by now. They probably forgot me the same week. But, I appreciate any of you who are here. I would like to be more supportive of you but, at a year, I’m still too upset, I get too upset while immersed in this, and I need more time turtled up to heal.

I think this triggered some kind of lymphatic problem for me too. Basically, my body just doesn’t heal anymore. I hurt my foot jumping into a trailer 8 months ago and I still can’t walk. I have been to four different doctors. Each says this heals in six weeks. It would be totally reasonable for you to wonder if I’m a hypochondriac and I’m not sure how to clearly let anyone know how ridiculous that is for me. The reason I took Finasteride for 13 months, through all the warning signs, is that I’m not a worrier. The doctors said it was normal for my penis to shrink and my erections to get weak. That would all go away, so, zero worries, I just plowed forward until I was past the point of no return. I’m the opposite of a hypochondriac. I always think I’m getting better. I always think that things are no problem. I’m just not afraid. But, I also have a penis that legitimately shrunk down and died. I have a foot that is in severe pain all the time, 8 months after I hurt it. Between Finasteride and my foot, now my last 7 doctors have all told me that there’s nothing they can do for me. When did doctors become so pathetic and unhelpful?

I just keep pressing forward. I feel alone. Unlike many of you, I only told a few people. There’s nothing to say. The people I told would wait two weeks and then ask if I had recovered. No. No I haven’t. At a year I am nowhere near recovered. One of my buddies said his wife completely lost sexual function from an injury. She’s young and gorgeous and she was really upset but is just pushing forward with life too. It was interesting because I was kind of jealous of his life and he’s not having sex either. He only told me because I told him how my life has been destroyed.

I don’t feel the depression anymore. But, I’m also more okay with dying than I ever was before this. I’m not going to kill myself. But, I really understand the people who do. This is tragic and awful. I’ve never been a victim in my life, but I was a victim here. I trusted multiple doctors and through ignorance, denial, and ego they convinced me to wreck myself, encouraged me through my warning signs, and then disowned me the moment I had the natural results. I feel like someone should pay, but I also don’t have the energy to do courts, or even revenge. I keep wanting to be in a calmer place, with more perspective, before I take any action.

I don’t have the reference now, but there was a rat or mouse study with finasteride and penis size shrunk 20% in the first 30 days for all the mice. Microscope analysis showed that the former muscle cells died and turned to collagen. I know there are lots of theories here. To me, judging from my experience of feeling it all dying, I think DHT is the fuel keeping that tissue alive and I took a drug which blocked it and all of that tissue died. I think the depression was my natural horniness trying to activate that tissue and getting no response. So I don’t believe it’s coming back. It hurt SO MUCH, for SO LONG. I think I’m like a drunk driving victim, or a surprise cancer patient who just had bad luck. My life was fine. It was going great. Now this huge event happened and I’ll keep giving my physiology time to recover and then make the most of whatever life I have left.

I hate saying this, but I suspect it’s probably some component of my healing: My hair is better now than when I started Finasteride. It’s not fantastic, but I look at before pics and there’s no doubt that my hair is better now than it was. Also, I actually have slightly less anxiety now than I had before. It’s partially that I’ve given up. I am just living now, doing what I can. The dream died. I was still looking for my wife. I was still excited about meeting her someday. That’s why I was trying ways to stay as attractive as I can be. Now I’m at a year and the only thing I can think to do in that department is wait another year and see if any more penis function returns. I am mortified about the first time a girl interacts with my limp collagen. I can’t watch the scenes in movies that used to arouse that muscle that died. I still need more healing time.

I do still have some hope, but I don’t know who I’m built for anymore. I was built for a horny girl before who also was friendly. As a result I still know girls like that, but I have nothing for them now. They need the sharp attraction and erections twice a day that happened regardless of whether I even wanted it before. I can’t offer that anymore, and I can’t fake the arousal that I now can’t feel. I could fake a little probably, but not sustainably. I would just feel bad if I were in the situations that once caused me to feel so much.

So, at 12 months post Finasteride I can say that my life is WAY better than it was at 1 month post Finasteride. But my life is WAY worse than it was before Finasteride. This is a nightmare. I will keep pushing forward. I feel sad for myself though. This is awful. I wish anyone had looked out for me. I wish doctors cared enough to listen instead of blanking out and waiting for me to leave. I hope I still meet a girl someday and make a marriage out of it. I’m now perfect for a girl whose genitals have been mutilated. I’m not ready to advertise for a girl like that yet though.

In the meantime, know that you are not alone. I’m not talkative and I’m not stopping in much. But I’m out here suffering too. Trying to find a moment of happiness each day. Trying to find some reason to still be alive. And I’ll be back to check in when the next landmark hits.

8 Likes
#11

Hey PeaceHugs, sorry to hear about your situation brother. How is it now? I got off finasteride end of July and had really bad depression for a while, and now it is easing up and I’m not suicidal all the time. Are the mental health aspects of PFS eased up even more? They were the scariest thing for me IMO. Thank you for taking the time to update everyone in detail on your status. Godspeed to us bro

1 Like