My Story, Any Hope?

Member Stories
#1

  1. Where are you from (country)?
    USA

  2. 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

  3. What is your current age, height, weight?
    Age 37, 5ft 11in

  4. Do you excercise regularly? If so, what type of excercise?
    I did… Walking, running, lifting

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    All types of food mostly good diet.

  6. Why did you take Finasteride (hair loss, BPH, other)?
    hair loss

  7. For how long did you take Finasteride (weeks/months/years)?
    24 Days

  8. How old were you, and WHEN (date) did you start Finasteride?
    Age 37

  9. How old were you when you quit, and WHEN (date) did you quit?
    Age 37

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

  11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    generic

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
    1.25mg

  13. How long into your use of Finasteride did you notice the onset of side effects?
    Day 2 watery semen and balls hurt. I waited it out a couple days at the ball pain went away.

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation?
    On day 23 I got ED (rubber dick) Just after having sex. Thats the day I stopped the meds. Its been 5 days and im getting worse.

Put an X beside all that apply:

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
[ ] Reduced Ejaculate
[X] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[X] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[X] Confusion
[X] Memory Loss / Forgetfullness
[ ] 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
[ ] Suicidal Thoughts

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

Misc
[X] Prostate pain
[X] Persistent Fatigue / Exhaustion
[X] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[X] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)
Dry Skin, Dry Eyes, Numbness at the base of my head.

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    None

  2. If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)?
    Getting a Dr Appt to check soon.

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

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

I was prescribed finasteride 5mg. Instructed to split tabs into 4 pieces and take 1 daily for male pattern baldness on March 31, took first pill. On the second day I did get watery semen and ball aches. The ball aches subsided in a few days. I was told watery semen was a possible side effect and there could be fertility concerns but I had planned to get a vasectomy on the 11th so I was not concerned with fertility. After the vasectomy I did very well. I healed up in about 3 days and was having sex with no issues.
Then on April 23 I had sex with my wife and when I ejaculated it felt like razor blades. Later that day my area was in pain. I would have blamed the vasectomy but my penis felt like rubber, complete sensation lost.

I stopped taking the medication and have continue to have sensation loss in my penis and unable to get an erection. Neither my Dr. nor pharmacist informed me of potential permanent side effects. I understood that side effects would stop when the medication was stopped. I went back to my doctor last Friday April 25 to inform him of my issue(s). He did a physical exam and said noting looks wrong. I agreed at that time noting externally had changed but I could no longer feel pleasure on my penis. It just feels like a finger and it will not get hard with any stimulation. He said the issue should resolve in a week. It’s been 5 days off the medication and unfortunately my issue(s) have not cleared up and may be getting worse. I have had a lot of pain in my groin and lower abdomen. My penis has shrunk down. My stomach is very sensitive to food. My mood feels completely disconnected. I am unable to experience emotions and difficulty sleeping. My cognition has slowed down noticeably.

I am still hoping that the symptoms will fade in a few days but searching around for others that have experienced and pulled out of it seems somewhat non-existent.
I also found out that Merck added ED that continues after stopping to the label insert. However on the propecia website site it only says “A small number of men experienced certain sexual side effects, such as less desire for sex, difficulty in achieving an erection, or a decrease in the amount of semen. Each of these side effects occurred in less than 2% of men and went away in men who stopped taking PROPECIA because of them.”

This was really all the information I had when I was prescribed this medication. Like I said no one my Dr. or Pharm. said anything about “permanent” issues to me. I was perfectly healthy person before I used this medication and now I have sudden ED, pain, and worst disconnection from emotions.

I reported this to the FDA today. Medwatch Report Submitted 4/28/2014

My Initial Crash Symptoms
#2

Updated to my current status. (See below.) Last night an hour before bed I took 4.5Mg of melatonin and was able to sleep for 6hrs. Sleep was key. When I wrote this post I had not slept well in 3 days. I am not sure if this is a good sign or not. I woke up once to pee, I didn’t have full on wood but it looked like my body was trying to. My penis looked fuller like it should so there is still blood flow.

I went back to the Doctor this morning. I got the usual thing that everyone else has posted. Its psychosomatic. I still wanted him to do at least a prostate check. My area there has been burning off and on every since I lost my ability to get an erection. When he touched it, OUCH!!. Is that normal?

The Dr. said it the size was normal and it wasn’t hard, no red flags. He prescribed me 800 Mg Mortin for pain and some very strong antibiotics. Now based on what I have read on this site I don’t think it would be wise to take the Motrin. Any opinions the antibiotics?

I didn’t notice if anyone had success with antibiotics or if it made stuff worse. I am taking vitamins, green tea, Broccoli, DHA fish oil. Looking for anything natural that lowers estrogen and promotes healthy T.

The Dr. didn’t turn me down on the hormone profile but he did say the workup I gave him would cost like $3,000. I used the short list in the FAQ… Does that seem like and excessive amount? what is the most important to have checked at my stage? I’m about 6 days post.

Also today I noticed my skin was a bit oilier and so was my scalp. I took that to be a good sign as well. The last few days leading up to my post here my skin and eyes were drier then I have ever experienced. My genitals and penis are still numb but they don’t feel 100% numb like a foreign object. They did when this first happened but there is no real sensation improvement and I get 0 excitement from porn or wife. Not like I did just a few days ago… :frowning:

Put an X beside all that apply:

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 (Some very slight improvement.)
[X] Watery Ejaculate (when I was able to it was watery)
[ ] Reduced Ejaculate
[X] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat ( I took 4.5Mg of Melatonin and got a solid 6hrs of sleep. These symptoms lifted.)
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[ ] Suicidal Thoughts

Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis (Without a real woody I honestly have to retract this one for now.)
[X] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[X] Genital numbness / sensitivity decrease (Still in Full Force)
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes (Lifted some with sleep.)

Misc
[X] Prostate pain
[ ] Persistent Fatigue / Exhaustion (Also much better after sleep.)

[ ] Stomach Pains / Digestion Problems (Much improved today. was hungry and could eat well.)
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness (Much Improved. With sleep)
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

#3

Wednesday night I was extremely fatigued from insomnia… I did start to notice a little positive flush feeling in my genital area. Like symptoms might be letting up. Then I just crashed to sleep and got a solid 6 or 7 hrs or sleep. Still work up with bags under my eye like I got no REM sleep, such a let down for me. My anxiety was in full swing and mental sides were not letting me go. I sucked it up and got through the day anyway. At least the constant pain was gone.

Thursday, Its been exactly 1 week off this crap. I spoke with Dr. Irwin Goldstein today. He said that this stuff is poison (obviously). However he has never seen someone come down with these symptoms so quickly. He must not be reading this website… The Dr. also seemed surprised that I went from full erection having sex to 0 that fast while still on the drug. He asked me if I was getting any nocturnal erections. I told him my sleep was very poor but when I was able to sleep my penis was getting fuller but not erect. He said I have a problem for sure but he wanted me to wait a bit longer to see if things improve. They did send me an order for blood work. If you believe Mercks bull$hist study it takes 14 days to get back to baseline. I may need to wait another 7 days or so before I test. I felt better after talking to someone that believes there is a problem. Unfortunately it doesn’t sound like there is a solution. I wonder how many people don’t report their issue and just suffer. There full workup for remote people takes 2 days. You see three docs for different things and the cost was ~$1,600 , possible other misc not included.

After the phone call I started to question myself a little internally. After I hung up I took my Ipad and put on some porn. I tried to shut off my mind and focus on getting it up… The best I could do was about half way. Then my wife came home… I asked her to come into the room and let see if I can get an erection. She came in and we gave it a shot… It took way more effort then before but I was able to get a full erection even penetration without loosening it. I was very Very happy. However… I read here that for many guys orgasm in the recovery stage was a trigger. I felt that could be the case for me as well. So I took it easy and gave her an O and held it. No need to piss off my hopefully recovering body. This helped a ton with the anxiety I had been building inside for the last week.

An observation… My penis shrunk up for sure but once I got it fully erect it looked its normal self. Once the erection was over it shrunk back down to its new smaller size. Disappointing.

I was able to fall asleep at decent time but woke up at 2,3 hour intervals. Still having mild puffiness under my eyes. I am writing this now because I couldn’t fall back asleep after the second wakening. Its still very early. I don’t think I am hitting REM sleep still and no nocturnal erection still. Due to the difficulty getting an erection I am afraid that nocturnal erection may not come back. I assume this is how disease sets in.

At least my head is a bit clearer now. The anxiety was crippling and just not helping me recover at all. I really think that drug is a neurological poison. When all labs check out for people and you can physically get an erection (your body works) but the brain seems to be messed up. I also think the lack of REM sleep greatly contributes to the mental sides. My mucus and sylvia production have been compromised as well. I had hoped they would come back after the anxiety lifted but so far they have not.

Sexual
[X] Loss of Libido / Sex Drive (Still extremely weak but obviously not 100% gone.)
[X] Erectile Dysfunction (Id still consider this a big problem. Not pre-Fin at all but working now at least.)
[ ] Complete Impotence (I guess I can remove this for the time being.)

Mental
Fluctuate with anxiety and quality of sleep.

Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis (Without a real woody I honestly have to retract this one for now.)
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease (Feeling still muted but not gone completely like it was a few days ago.)
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes (Lifted some with sleep.)

Misc
[ ] Prostate pain

#4

I just felt for adding that you should try to take it easy for some time.

I think that you just like me are overanalyzing things during the first weeks to say.

Pass away any negative thoughts, I know its alot easier said than done but just try to do it.

In the absolute worst scenario you wont be where you are now in the next 6 months.
While every hour might feel as long as a day for you at the moment, this wont be the case the sooner you realize that you need to stop overanalyzing.
Libido and sexual intercourse have alot to do with how you feel and if you are not sleeping well, overanalyzing every single thing, anxious, depressed etc you are simply not in mood for nearly anything, let alone sex.
Other than that penile tissue changes etc can occur during depressive, anxious and worrying behaviours.

If anything im just trying to be helpful here so excuse me if I misunderstood your situation. Good luck!

#5

Don’t mean to sound too harsh but in the year 2014 I see no fucking reason on the face of this earth why any sane person would but dumb enough to sniff a fucking proscar or Propecia pill with all the evidence here and the rest of the net on how dangerous it is!

It’s beyond me when I see new member joining with dates in 2014 when they’ve swallowed this poisonous piece of crap

This is not a personal jab at you and I’m sorry you are here but jeez

#6

Its probably because they read hair loss forums like I did and were told that the side effects were “extremely rare” by corrupt doctors.

Also on hair loss forums they slag off this website I wish I had taken more time to read the posts here. But I couldn’t read alot of the site because most of the forum was locked out to non members I think the whole forum should be made available to public so they can see first hand how dangerous fin really is.

I dont blame my self for getting PFS I blame the doctor who never told me about ANY of the side effects.

If people knew it could cause permanent side effects nobody would take the drug.

#7

Mark is correct. Hair loss sites like Bernstein medical in NY and Bauman Medical in FL. The Merck site for Propicia doesn’t acknowledge any permanent sides. Then My GP said it was fine. He had a couple others on it with no reported issues.

The main stream is still characterizing this group as a bunch of hypochondriac’s. In the mean time the drug is still racking up casualties. This guy Patrick took only one pill then crashed a month later. This drug is not safe and its a tragedy that its still being sold for hair loss.

youtube.com/watch?v=g3oTKY3T1DY
dikgo.com/dealing-with-post-fina … e-effects/

#8

Mark, I told my family only today that had I had any suggestion that the side effects could be permanent, I wouldn’t have touched the fucking poison

Merck have known from day that the side effects could last forever, yet they fooled us into believing that they would go away once we stop!

Fucking evil, money spinning bastards

#9

Stupidkoko,

My biggest issues right now are insomnia and lack of emotions. My penis works but the sensitivity is no where near what it should be. I haven’t had a single night of full REM sleep since this started. Reading all the posts here it sounds like I may never. I am doing my best to keep it together for my Family. Not sure how long ill last like this at work. I’m trying to keep a low profile but people can tell something is wrong. I am getting pain all over my body now from lack of restful sleep. I got some Ambien from my Doctor but it made me feel worst the next day. I think it kicked my anxiety into high gear. If any of you have a suggestion on how to get some REM sleep I am all ears.

#10

DR. G sent me this list of LABs. What do you think he is looking to see? Is there a pattern with PFS?

Serum thyroid stimulating hormone (TSH)
Serum follicle stimulating hormone (FSH)
Total plasma testosterone level
Serum dihydrotestosterone level
Serum estradiol level
Postpubertal male serum LH level
Serum prolactin level
Serum SHBG level

#11

I took 1/3 of a Xanax last night. I did get about 6 hours of sleep. I still didn’t get that ahhh so relaxing feeling from sleeping. Now I wonder if I ever will. It seems like the drug killed the part of my brain that experiences any pleasure sex or otherwise. I am not going to touch the Xanax again unless I get desperate. I ordered that Allopregnanolone spray to see if it might help. I am getting more anxious today with normal casual encounters. Emotions are flat and I cant concentrate for shit. I am at exactly 14 days out and things are not getting much better. So many story’s of never or years for this and that. Not sure how long I can keep this up.

#12

I had massive insomnia the first 1,5 years after finasteride and it didn’t get much better until I tried waterfasting. So I just want to give you some hope and tell you that there are definitely ways to get better (besides time) and maybe you are one of the lucky ones who recover within weeks/months without any treatment or therapy.

#13

I do agree, I feel a little better with an empty stomach… But I wasn’t a heavy guy to begin with and I have already lost 15 lbs. in the last 15 or so days. I have tried several things to get some restful sleep and they have all failed. I wish this drug had just killed me… At least my Family would be able to get my life insurance. Now it seems the rest of my life is going to be filled with misery and suffering. All the things l liked to do are gone, sleep, sex, hobbies, how is this even possible. It’s like the pill blocked my ability to experience joy, love, passion, & pleasure. Sexual or otherwise. It so nicely left me with the ability to fell pain… Thanks! The last few days have turned into a total blur. Time has slowed down. Short car rides seem like they take forever. When I do sleep its only for an hour or so and I wake up. This site seems like nothing but a bunch of dead ends. I have tried some of the tips… Xanax, Ambien, Allopregnanolone Spray, Calcium with Magnesium. Noting works at all. When I start to fall asleep I feel like my body doesn’t know what to do. My hands start to tingle my heart rate increases, then twitches. I have no idea how the guys here function like this for years on end. I am so sleep deprived I can’t contemplate doing much. I am the head of my household… My family is in danger. I can’t believe I put them in this situation for such a vain stupid thing. Nor can I believe that this stupid drug has been out so long destroying lives like this. People with my symptoms on this site have never gotten better. I got full blown PFS, Mental, Sexual. I haven’t tested my hormones but it sounds like a waste of money. So I don’t know if I have hypo on top if it. If they come back low normal all those solution didn’t sound like they helped anyone.

#14

Many of us have been where you are now (me too), but you really have to believe me when I tell you that it is NOT permanent if you give your body the chance to heal itself. I too lost 15 pounds (80kg down to 72kg) but nevertheless I did these waterfasts even when EVERYBODY in my family told me not to and I was very skinny afterwards. But after these fasts you will immediately start to gain weight and if your lucky even more than what you started with (thanks to yo-yo effect).

I myself am going start with short waterfasts tomorrow, that means 2-3 days fasting and the rest of the week eating. That may be a bit uncomfortable because the first 2 days are always the hardest of a fast but that way I don’t have that long downtime I have with a 14 day fast. I also agree that testing hormones is a waste of money. And stop drinking alcohol + coffee, I can’t stress this enough.

If you need a quick fix for you sleep / mood, you could try some benzodiazepine or Mirtazapine (viewtopic.php?f=5&t=8796). These drugs can also help you to gain some weight. But keep in mind that they don’t fix the underlying problem, they are just emergency helpers which you might eventually need right now.

You have to stay strong, for your family, your friends and for yourself.

#15

I did Cal/Mag and 100mg of 5-HTP last night before bed. This is the first time I woke up feeling better instead of worse. I still only got about 6 hours of sleep. I might try 200mg of 5-HTP tonight and see if I can get more sleep.

#16

5-HTP was a bust for me. Had an allergic reaction on the second night of use. I started to feel burning sensation on my skin and in my throat. Took a small amount of Xanax last night. Slept okay. My body is getting weaker and weaker. I sent a message to my doctor and he basically replied with a divorce. He said there is no way I could have all these problems from 24 days of use. He would refer me to a Urologist if I like. Not sure what to do. I have terrible sleep, cogitative slowness, anxiety, fatigue, emotional disconnection, penile numbness. What should I do? I contacted Dr. Goldstein but he was rather vague on what he could do exactly. I can take bloods and fly out for a full work up. However not a lot of success one way or another on the boards here. I think the worst feeling is that you cant do anything but watch your health take a nose dive.

#17

Day 29:

I moved forward with the blood tests today. They did the blood draw at ~9am. I slept last night without sleep aids. I actually slept 7 hours only getting up once to pee. I did get a nocturnal erection and I didn’t wake up feeling like I got run over by a truck.

Here is where I am at today:

Insomnia, (Decreasing, hopefully this continues. I had dreams on and off sleep meds last night.)
Dry Eyes, (No noticeable improvement. Had to get plugs and special eye drops.)
Dry Mouth, (The extreme dryness has let up some but not back to normal.)
Low Penile sensitivity, ( I can get an erection and have sex. Just doesn’t fell like it should.)
Energy Level, (LOW, I was a very active person and this has really f***** me over.)
Muscle Wasting, (I am dropping weight at an astonishing pace and its not fat loss.)
Digestion, ( At first I through I was spared this problem. Nope! poo pellets great!)
Depression, (Up and down. If I concentrate/dwell on this situation I get very depressed.)
Cognitive, ( I feel sharper with sleep as long as its without meds. Still not 100% myself)
Libido, (Way lower then before. No spontaneous sexual arousal.)
Flat Moods, ( I lack excitement for things the used to make me happy.)
Suicidal Thoughts, ( I have never been suicidal in the past. I never understood how others could feel this way. Unfortunately now I do understand. The hopelessness feelings are overwhelming. Especially when you realize that there is no solution and things may get better but could also decline more.)

On the warning label they need to change Libido to Life and ED to permanent neurological damage.

#18

You are one month in. There is still time. Other people have recovered after a couple of weeks and other members have reported natural improvements even after 2 years. I know it’s hard (I am 7 years in), but you have to give your body time. There is a decent chance that things will improve. For me it helps if I force myself to have a normal life. I’m still emotionally blunt, but when I am among people and active for some time I forget to think about it and reach a “flow” status. That helps.

Good luck!

#19

You have to check,your hormone levels time to time

key is the thyroid and adrenal failure after your possible hormonal crash in future,

untili that time

check your thyroid and adrenals frequently

pfs is a adrenal/tryroid problem as far as i understand

#20

My blood work so far…
http://www.propeciahelp.com/forum/viewtopic.php?f=4&t=9196