My PFS experience

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)?
Canada
How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)
Google
What is your current age, height, weight?
35 5’8" 150lbs
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.)?
1mg day
What condition was being treated with the drug?

For how long did you take the drug (weeks/months/years)?
1 month
How old were you, and WHEN (date) did you start the drug?
35 sept 2020
How old were you when you quit, and WHEN (date) did you quit?
35 oct 2020
How did you quit (cold turkey or taper off)?
Cold turkey
How long into your usage did you notice the onset of side effects?
3 weeks
What side effects did you experience that have yet to resolve since discontinuation?

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
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[ ] 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
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ x] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ x] 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
[ x] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[X ] Other (please explain)
Dry skin, no hair loss, dry eyes, body composition changes, cracking joints

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
None
If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?

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

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
The worst decision of my life

4 Likes
suicide
#2

Hi @Titan1

I’m terribly sorry to hear about your experience. I myself only took finasteride for a month and experienced devastating effects as a result. I can tell you that many patients experience an uptick after the first 9 months, so please hang in there.

If you’re looking to contribute in a meaningful way, could you also please complete the patient survey, via the link at the top of the forum? It only takes about 30 minutes and will be invaluable for our research efforts.

We are also seeking patients for a new PFS video podcast the admins of this forum will begin soon, so if you would like to speak publicly, please get in touch via PM.

Thanks,
Mitch

1 Like
#4

Hi!
I understand what your situation may seem unbearable, but I beg you not to rush into anything. No matter how bad the situation is, giving up is not the thing that going to help you or your family. I personally recommend you to take a break, remove any expectations and pressure from yourself. Say yourself “I’m crashed, ok? I need to rest, I need to stabilize and gather strength”. No matter how much time it will take, or what your parents will tell you, they don’t know your situation. You should take care of yourself.

Also please do not rely on benzos. It’s an emergency medication, any long run on these will harm you more. Consider talking with your doctor about low-dose neuroleptic. 1 mg flupentixol greatly helped me in the first weeks of anxiety and insomnia. But again do not rely on these medications in the long run. And don’t forget to eat well. Your body needs nutrients to restore itself.

Please don’t hesitate to post here about your situation. We are here to help.

2 Likes
#5

Hi mate,

Everything will be okay. The next few months are likely going to be hard, but you need to stay strong, most people can and will recover significantly. It just takes time for the body to heal itself.

I too had to quit my job, move back in with my parents, I was so fucked up beyond believe from the damage this drug caused. I am now doing substantially better and I am confident I will make a full recovery with time.

It’s still very early days so it’s difficult to understand where your difficulties lie. You could simply be experiencing a hormone imbalance or an adrenal crash. Please try not to catasrophize. Do not spend hours and hours on end reading hopeless forum posts. You need to put your energy into recovering. You need to focus on doing good, healthy things, every single day. Give it time and be patient. Your body will heal from this.

A great starting point is to check out the youtube channel “Health Recovery” on Youtube. I made most of my progress when I started following his advice. He gives advice for CFS / ME / Adrenal fatigue, however it’s equally as applicable to your situation. You just need to focus on living the most healthy and stress free life as possible, eliminate as many burdens as possible to allow your body to heal. Cannot recommend Health Recovery enough.

I would highly advise against the use of benzos. They are very toxic drugs and the physical dependence will cause many issues for you down the track. No drug is obviously the best and recommended, however if you are desperate amitriptyline is a better choice for sleep.

Lastly, do not look for health in supplements. Supplements will not pull you out of this mess and may make you worse.

Feel free to message us any time.

2 Likes
#6

I have crazy mood swings throughout the day. I go from being hystical, to rage to being completely numb. I also can’t cry tears, whoch I want to so bad because the emotion just gets trapped inside and gives me a headache. If I don’t take the benzo and mirtazapine, sleep is impossible. I really dont know how Im going to be able to come off the benzo as it seems like its the only thing that works somewhat for my anxiety. I get intense anxiety from doing things I used to enjoy. It makes living with this nearly impossible as I am stuck on PFS 99.9% of the time. I just started wellbutrin today to see if that help at all with the deep depression I am experiencing. The suicidal ideation I experience is persistant but I am too afraid of death and what it would do to my family. I’m at a complete loss right now as far as what to do to move forward. Woke up at least 20 times last night. I feel like Im at a breaking point

#7

You are definitely at a breaking point, but it is up to you if you break. I want to repeat my statement about removing any expectations and pressure from yourself right now. Because it’s not some empty words or folk wisdom, no, it is a working tactic to survive the hardest times. Your life is the only thing you need to worry about right now. Other things can wait.

I can assure you what you will feel better. I’m not talking about full recovery, nobody can guarantee you that. But the current mess will definitely end. You will touch some sort of baseline, from which you will be able to start doing something.

Also a quick remark about your medication. Don’t stress too much about benzo right now if it helps you. Just do not raise your dose if you can, and try to stick with the instruction about treatment duration. What I know about Mirtazapine and Wellbutrin, both of them is some sort of stimulating antidepressants. They may prevent you from sleep. Especially Wellbutrin, because norepinephrine and dopamine are very bad in the context of anxiety. However, serotonin can be beneficial, but sometimes it is not. Just be aware.

#8

I have been battling this disease for over year now and I am sad to report that I have only continued to deteriorate. I am a complete shell of my former self. I spend most of my time pacing my apartment due to my inability to control my anxiety or just crying in bed. Functioning on the most basic level has become an insurmountable task. I used to be a highly motivated and successful individual. Sleep is my only refuge but even that is choppy at best. I have lost all joy in the many things I used to take interest in. The anhedonia is so severe that not only do I not have interest in anything but things that I used to enjoy just give me pain and irritability now. I can no longer feel love or empathy. I have a close family and many friends but this has pretty much destroyed all my relationships. I can’t connect with others like I used to be able to so easily. My physical body is nearly unrecognizeable. I went from 155lbs lean muscle, to 135lbs 3 weeks post crash due to complete muscle wastage. I am now a whopping 190lbs of fat. I don’t eat the best because I am so dopamine deprived that I tend to want to eat sugars and carbs to try to get some sort of dopamine hit which is futile. My appetite has completely changed. I cannot exercise either due to what I presume are severe androgen deficiencies caused by AR. The best I can do is walk. However I feel like PFS has also messed up my metabolism and my body composition is not normal. I have severe tinnitus and headpressure that makes me dizzy and want to smash my head against the wall. I have the full gamet of sexual symptoms. I truly believe I am one of the most severe cases of PFS. I have tried many things to try to improve my baseline but nothing has provided any relief.

I have been battling as hard as I can but I fear I cannot withstand this state much longer without some immediate improvements. I do not want to spread fear given my horrible circumstances. There is proof that this condition is not hopeless and a case like mine is definitely “a minority within a minority” like Axo once coined himself. I think there is much to look forward to with what PFS Network is doing. It is going to take time and the community is really going have to work together to push this thing forward. I have no doubt we will get there eventually. How long, depends on us. I have contributed what I can and will continue to do so and if I pass I have also left something for PFS Network in my will.

If I could change one thing from when I first developed PFS it would be to try as hard as possible to not develop a benzodiazepine addiction. These were the only substances that allowed me to sleep but I feel like they have made me worse in the long run. Now I take Ativan 3x a day at 1mg and it does basically nothing.

Everybody needs to support each other. I was lucky to get to know a few really good people in this community and I don’t think I’d have made it this far if I hadn’t. The work that PFS Network has done also kept me going at times. I am really proud of their efforts. There is also an ugly side to this community where people will tell you that some insane protocols will heal you despite no scientific basis. I wasted a bunch of money on supplements, tests and PFS Dr. Appts and got nowhere. Perhaps for some milder cases but I think the best healer for this is time as you will find evidence of this on this forum. So much money has been wasted on misguided approaches that could have gone to research. We could be way further along already. It’s obvious to be desperate and want to take some sort of action but in the end it will be the research that gets us out of this.

I wish everybody the best. None of us deserved this but I am confident that one day there will be justice.

7 Likes
#9

Sorry to read this Titan it makes for hard reading when someone is smashed by this disease. I don’t have any advice as I’m out of ideas myself and share your views on supps / drugs etc and what I took for sleep also worsened my baseline Agreed time is the only healer. Religion and faith has given me something to hang on to. I haven’t improved yet but i pray each day I try to forgive those who brought me here = its hard. I try not to feel distain and jealousy towards those who have a life. I try not to feel irritated by every little thing. Reading the new testament outloud and understanding gods word :pray: has helped me accept things a little better. I ponder the passages and look at the sacrifices made by many and it humbles me. I t takes the heat out of the emotional nightmare/self suffering even just temporarily. Who knows reading the bible could change brain plasticity over tjme. Give it a go it might help distract your mind from the hell of pfs

1 Like
#10

If I can offer 1 positive I thought I was losing my mind my emotional state was 1 of pure distress, extreme anxiety, suicidal ideation inability to look anyone in the eye. Anhedonia I was terrified of the world. Over thd years and with time I think those sides have ebbed very slightly… I removed stress, ie had to leave work in the end, I gave up on my old life trying to hold on was bad for me it was killing me. So I think with time/acceptance/daily battles the emotional state can come down a little. Even though my physical state has steadily worsened. Time could still be an ally,

#11

Thank you Laz. You are a true warrior in every sense of the word.

I wrote my story on Medium. Figured I’d share it here.

https://medium.com/@MJT19/in-august-of-2020-i-noticed-i-was-shedding-a-lot-of-hair-18eaf02fb5ac

4 Likes
#12

Jesus dude what a perfect writeup, you didn’t miss a thing. I’m only three and a half months in but we share the same experience right down to the Rogaine and the massive shed which I think the Rogaine caused if you read user reports. There is nothing you wrote that I can’t relate to, every grim fucking word. I can’t even pick anything out to highlight because it’s every goddam thing. Fuck.

1 Like
#13

I’ve had PFS for over a year just like you. Over the course of the year, my condition also deteriorated. What bothers me most is also severe tinnitus and muscle atrophy

#14

Thanks man. That’s a great write up/you’ve framed it perfectly. It captures everything that this fucking disease does. Its quite evident that repeated use seems to be a key factor in severity and for those that get progressively worse. Thanks again for sharing its a really candid account of what this has done to you. Very brave @Titan1

2 Likes
#15

One of the hardest things for me has been trying to convince family and friends that the vast majority of my suffering is caused by PFS and not by depression or anxiety which they think are seperate entities.

I suffer from Generalized Anxiety Disorder so for me the ones who do believe somewhat in PFS still believe that it is largely a mental thing and that I can somehow just change the way I think or have a different attitude. It’s rational to make this assumption given the current landscape of how this disease is portrayed online and within the medical system. Praying for the day that will change. PFS Network has done a great job of explaining this all but we need the scientific proof and acceptance within the medical community before we are really taken seriously. Research is so damn important right now.

Nobody could possibly understand the horror of this condition without experiencing it themselves though.

9 Likes
#16

I told my brother and my closest friend about my PFS, and I swear it went in one ear and out the other. Out of their memory by that nightfall.

My wife, bless her heart, seems content to ignore PFS and blame conditions on old age. I think she is avoiding the truth of it.

So yes, you’ll be lucky to have friends and family who are truly supportive. Good luck, Jim

5 Likes
#17

@JimWildman I have the same experiences as you my friend. Unfortunately it cuts deep but u seem to have contexted it better

1 Like
#18

Death is the end of everyone.
:footprints:

2 Likes