Walshy's Member Story

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)?

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 searched just for propecia/finasteride help

What is your current age, height, weight?

I am 36, 178cm and 71kg

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

I used Finasteride

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

Initially, I took 1mg. This caused me some issues so I stopped and read some advice online, which told me to reduce the dosage. I bought a pill cutter and I tried .5mg but this also caused me problems. I stopped again and waited a few weeks. Then I tried .25 once a week, then twice a week and gradually I took this every day. I noticed reduced sides so from then I tried to increase the dosage. When I stopped I was taking .5mg most days but I had been trying to up the dosage to .75mg gradually but I was having bad side effects so I stopped.

What condition was being treated with the drug?

Baldness

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

I think in total 6/7 months.

Date when you started the drug?

I can’t remember. I think it was mid-June 2021.

Date when you quit the drug?

Again, I am not sure but I think the first week of March 2022.

Age when you quit?

36

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

Cold Turkey

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

Immediately.

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

I think they have mostly all disappeared thank goodness.

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
[x] Complete Impotence
[x] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[x] Loss of Nocturnal Erections
[x] Watery Ejaculate
[x] Reduced Ejaculate
[x] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility - not sure about this

Mental
[x] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[x] Confusion
[x] Memory Loss / Forgetfulness
[x] Stumbling over Words / Losing Train of Thought
[ ] 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)
[ ] 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
[x] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[x] Frequent urination
[x] Lowered body temperature

[x] Other (please explain)
Insomnia. This was probably one of the worst side effects.

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Nothing really.

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)? no

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

no

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

Hi everyone,
I just thought I would make a post as a few months ago I was here when I was going through withdrawals from this drug and I didn’t see many positive stories or stories of recovery. I seem to have recovered (90 - 100%) so I thought I’d leave this here for anyone who was in the same position as me.

I began losing my hair when I hit puberty I suppose but it took a long time for it to get quite bad. Around 29/30 I noticed a really bad bald spot on the back of my head when trying on some jeans in a clothing store so I just shaved everything off. A couple of years later I started dermarolling and using minox and that completely stopped my hair loss (I wish I had known about this earlier). I am relatively comfortable with my looks and shaving my head but every now and then I think it would be nice to have the option of having a full head of hair again.

Last year around May or June I started thinking about adding Finasteride to my treatment to see if that would improve my results. I found an online chemist in Germany (I live here but I am not German), filled out some forms, and then ordered finasteride.

I had read about sexual side effects that happen at the start and quickly disappear after a few weeks so I didn’t really care too much about that. I trusted the mediation and the scientific method. I had heard about PFS but I thought it was just sexual sides and not all the others that I later found out about. Usually, when I take any medication I just check to see if I am allergic to anything in it and ignore the potential sides to avoid psychologically thinking about the sides and then imagining that I have them.

Anyways, the drug came and I began using it in mid-June 2021. I can’t remember the exact date. I took 1mg and within a short period of time, I felt physically awful. My balls were aching quite badly and I had a pain in my gut like I had been kicked in the testicles. I was dizzy and a bit confused. Generally, I just felt odd. I read the document that came with pills and googled some stuff about this. I read that this can happen during the first few weeks but it’ll pass. I skipped the next day and tried again but the sides were too weird. I decided to buy a pill cutter and reduce the dose.

A week or so later the pill cutter came and I began taking .5mg. I can’t remember exactly how long I did this but it was only a week or so. The sexual effects were so obvious. I couldn’t believe it really. My ability to get an erection just disappeared. If I got one it was quite soft and not fully hard. If I managed to get some sort of erection and masturbate, my orgasm had totally transformed. I mean there was no orgasm, there was a sensation when I finished but it wasn’t nice. It felt very unnatural. Also, I seemed to lose penis sensitivity. I also noticed my body odor seemed to change, which was also very odd, as I never really noticed my own smell before.

I reduced the dose to .25m while on vacation but I felt so weird. I had suffered from depression, anxiety, and terrible phobias for years, which I had managed to deal with after therapy and working on my fitness. Suddenly, I was having quite awful thoughts and I was feeling anxious. One day on a bus I nearly had a panic attack, which I managed to control. While on vacation I just stopped completely. I was not feeling right at all. This was late June or early July 2021. After two days of stopping, I didn’t sleep for about 5 days. I didn’t connect this to Finasteride at all, I just thought I was having some insomnia, which has happened a few times in my life. Now I realize it was probably finasteride that caused this.

A few weeks passed and I started to feel better again. The insomnia was short-lived and I began to feel better mentally and physically. My sex drive came back a bit. At this time I wasn’t particularly worried. In fact, I was more worried about the corona pandemic and the fact that I was unemployed at the time.

Around August I began experimenting with the drug again. I took it for two weeks at .5m and I again had sexual and anxiety problems. I stopped again for a few weeks. I decided to take small doses once or twice a week and then gradually increase the amount I took once my body got used to it.

I began with .25m twice a week 3 or 4 days apart. I didn’t feel any real sides from this so I upped this to every 2nd day and then after about a month near the end of September, I took .25m every day. I did notice some sexual sides but I could maintain an erection. When I ejaculated the sensation wasn’t right and I wasn’t completely hard but I could live with this if it worked.

In October I began to take .5m every third day and then every second day. This didn’t seem to cause any major changes. I still had some slight sexual sides but I felt generally ok and not too bad. However, I began to feel slightly anxious around this time and I remember a few sleepless nights when I was really worried and stressed out about things. My heart would be racing like crazy and it felt like it would burst out of my chest. I also began to notice that I was l sleeping less. Instead of 7 - 8 hours of sleep, I was getting 4 - 5. I didn’t really associate that with the drug.

In November, I tried to take .75m and 1mg a few times but each time I felt awful. Again, I had ball pain and also the sensation of being kicked in the testicles a few times. I was also becoming quite dizzy very easily and when I worked out in the gym sometimes I thought I was going to faint. I became very light-headed and everything became blurry. This had never happened before and I did think it might be because of Fin but I never googled it or read up on this.

I stopped experimenting with higher doses and stuck to .5m. I took .5m consistently from November until the first week of March 2022. My behavior was changing but again I didn’t connect this to Finasteride. My ability to have an erection completely vanished. I had no sexual desire whatsoever. That connection was gone. If I looked at porn there was nothing, no interest, no sex drive. I was sleeping maybe 3 or 4 hours a night. My anxiety was becoming terrible and I would often spend most of my day aimlessly walking around my flat or local park. I was full of so much energy and couldn’t sit still. My heart was constantly racing. I couldn’t concentrate on anything and my mind was racing all the time. I thought I was losing my mind. I called friends and family and broke down on the phone because I thought I was losing connection with reality. It was awful. There was no sensation in my penis or testicles. It was like I didn’t have them anymore. My balls did not feel right at all. They seemed to be a lot softer and smaller. My body odor completely changed.

I decided to stop based on the sexual side effects and not the other stuff, which I thought were genuine mental health issues from the corona pandemic and being alone so often. From January till the end of February my sex drive was gone completely. This was too much and not worth it. I read online that if this happens I can quit and the effects will disappear in a few weeks. All the other mental health and physical stuff I attributed to the pandemic. It never crossed my mind that Fin could be responsible.

I completely stopped in early March 2022. The next 2 months were insane and I can’t believe what happened. Initially, nothing happened for the first week or two. I still felt exactly the same; no erection or sex drive, depressed, anxious, sleeping little, and so on. After about two weeks I suddenly lost the ability to sleep. This lasted almost 3 weeks. This was such a nightmare and these weeks were terrifying. I was suffering from some sort of severe mental condition and went to my doctor where I broke down crying. She said I need help and that I need to see a psychiatrist but first she wanted to do some blood tests to check my thyroid or something. I had an appointment a week later.

I bought some sleeping tablets and went back home. These tablets didn’t work and I went days without sleep for 3 weeks. About every 2nd or 3rd day I might sleep for 2 or 3 hours but that was it. I started to think seriously about suicide. I wanted to kill myself and I even googled the best way to do it. These suicidal thoughts persisted for about 6 weeks and became less severe. I really thought it was the right thing to do rather than suffer the way I did. Mentally I have never been in such a horrible place, even when I suffered depression years ago, I never suffered like this. I was completely insane. I thought about committing myself as I believed I was on the brink of suicide. I was very negative and hated everything and everyone. It seemed like I lost all emotions or feelings. Emotional blunting I think it is called. I couldn’t laugh or cry. Holding a conversation was hard work and I would slur my speech, or I would start talking and then forget what point I was trying to make. I seriously wanted to die and hoped someone would murder me. Again, I have no other point in my life that compares to this period of withdrawal. It was absolutely insane. I wouldn’t wish it on my worst enemy.

One of the days I was thinking about why this was happening and what had happened to have triggered all this. I had absolutely no reason to be in such a condition. It was only then that I remembered that I had stopped Finasteride two or three weeks before. I thought perhaps it is important to investigate the role this drug potentially had. I read the information that came with the medication, which listed all the side effects I was experiencing: loss of sex drive, depression, erectile dysfunction, problems ejaculating, rapid heartbeat, anxiety, suicidal thoughts, insomnia, and more. It mentioned these can occur after stopping the treatment.

Then I googled these issues and found this forum and other forums. I watched a few youtube testimonials and I realized what exactly had been the source of all my problems over the last few months. I’m not sure if I had post finasteride syndrome as from what I read you can only have this if the symptoms last three or more months but I definitely suffered from something similar. I went back to my doctor and told her that I wanted to put psychological treatment on hold. I told her about Finasteride and she had actually heard about PFS, which was surprising. She suggested that there may be an issue with my hormones and that we should wait to see what happens. If there was no improvement then I needed mental health treatment and anti-depressants. I went back once so far for a checkup and I will go again in July I think and then we will make an assessment.

I read about the drug causing testicle and penis shrinkage. I checked both and my testicles were definitely smaller and softer. It felt like they had disintegrated a bit. There was no sensation at all in this region of my body. My penis seemed a bit smaller too.

Anyways, after about a month I managed to get a full night’s sleep. It just suddenly just happened. This was a huge relief. I didn’t cry or really feel much joy when this happened. I still had no feelings. About 6 after stopping I woke up with a soft erection. This was great news but I thought I had dreamt it when I woke up. A day or two later I woke up in the middle of the night with a full erection. I tried to masturbate a day or two after. It was still not quite right.

I still didn’t feel right. I had some depression and lingering suicidal thoughts. Concentration was hard and often I would get confused about what I was doing. This lasted a few more weeks.

I am coming to about 3 months since I completely stopped and I never thought I would be back in this condition again. Those 2 months after stopping was hell and I don’t know what I would have done if they had continued. In the last two or three weeks, there has been a huge improvement. I feel mentally and physically good. Suddenly, I am back to my old self. I get a little bit down but I think I am making a good recovery. My sex drive has returned and I can maintain an erection. When I ejaculate the good sensation has returned. The connection between my brain and my penis has returned, which is great. My testicles appear to be firmer and slightly larger. My penis also seems to be back to normal. Most importantly my mental health has improved and I can sleep. The suicidal thoughts are gone. I actually thought I would give in to these impulses and end my life. Insane.

I am hoping some people who stopped taking Fin and are suffering will see this and perhaps give them some hope and to wait and see what will happen. Please go to your doctor and tell family/friends what you are going through once you realize it. This was a shocking thing to go through and my heart goes out to anyone who suffers this short or long term. Clearly, there is something not right with this drug. I have never reacted to anything as I reacted to this drug and the stories I read here or watched on Youtube (PFS Network) are terrifying and need to be addressed. No one should suffer or lose their life because of this drug.

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You stopped finally at march 2022. From about more than 15 % of the finistaride user who have had side effects the overwhelming majority get back to normal in the first three months after quitting. Only a very little minority don’t go back to normal and develop permanent side effects.

Truly on the other hand you have had really hard withdrawals much more than normal and every recovery story gives much hope to the whole community. I passed the two weeks, month and three months mark without any recovery.:disappointed:

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Thank you for telling your story @Walshy ! I can certainly relate to this part

People say “every drug has side effects”, but they have no idea what they’re in for with drugs like finasteride. And doctors don’t inform them.

Like @Exsexgod was saying, it’s seems like majority of people who get these side effects recover when they stop the drug though. So while your experience was harrowing, the recovery period looks fairly typical.

I hope you’ll get back to 100% soon!

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BTW, here are some things you can do to help the rest of us -

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所以说,我们和 @Hanru_Sun是最晦气的一帮家伙,看到康复帖子真的很高兴,但就像无期徒刑的家伙看到有人出狱一样,为什么我们不可以呢?

Anyway, this is something to celebrate and PFS can be cured

恭喜你,希望你挺过三个月大关 一切都会好起来的
就算他不会,也不要失去希望,在绝望中生活不失一件比较远有意义的事情

Hey, thanks for the response. I wasn’t whether to post this on the forum as I seem to be fine now but a friend suggested I do after I told about what happened. I might give an update later just to confirm that I am doing ok now.

I just thought it might give help someone out in case they are struggling at the moment with these issues and perhaps they might clear up in 2/3 months. I think I shall report it to the medicine regulator here in Germany. My doctor seemed to have some knowledge about this so maybe the health problems associated with Finasteride are becoming more well known. Hopefully, there will be some cure or treatment for people who suffer this long-term over many months/years. For such symptoms to persist over months/years is just totally unacceptable and not right.

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Thank you for sharing your story. Do you follow a particular diet or do you do cardio/resistance training?
You didn’t take any supplements right?

Symptoms resolved in a typical timeframe, so whatever he did, we can’t attribute those things to the improvements he felt.

There have been a lot of posts in the past where people proclaim to have found the cure to PFS, when in reality, they’ve just recovered from on-drug side effects after a few months.

(At the same time, I don’t mean to minimize the horror that @Walshy went through - it takes mental toughness to make it through - even if it’s just a few months).

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No not really. I try to keep fit and do resistance training 3/4 times a week except the last two weeks since I had covid. I try to follow a plant based diet but I give into temptation and usually have like a steak or burger once a week. I also avoid dairy except cheese but I dunno if all this stuff is important. I take omega 3, vitamin d and iron supplements once a day.

Apart from that I went to my doctor and tried to tell friends and family what was going in my life. I’m not sure if that helps either. Also, I went through psychotherapy for a few years. Some of the habits and skills I picked up from that maybe helped.

It is hard to say what helped. I think it just took some time for my body to heal/readjust after quitting finasteride. Maybe if I took it longer there would have been worse damage. I probably should have connected the dots earlier on when I started the treatment but I genuinely thought some of the issues were because of the pandemic, isolation, lack of stimulation and so on.

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Hello ,

Did you experience penile numbness? How exactly did this recover?

thanks

I’m really glad to hear this story. Im nearly at 3 months and over the last few weeks I have been making great improvements. Im still spaced out with brain fog but to a much lesser extent and erections, libido, emotions seem to be making a comeback. I have some bad days but the road to recovery was never going to be linear. Theres a lot of negativity on here and rightly so, this is a horrible condition to live through, but hearing some positivity from your recovery means a lot.