My story (the good and the bad)

Member Stories
#1

COPY AND PASTE THE FOLLOWING INTO YOUR OWN POST, then answer the questions.

  1. Where are you from (country)?
    CANADA

  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 - Post Finasteride Syndrom

  3. What is your current age, height, weight?
    38 years old, 6’, 185 pounds

  4. Do you excercise regularly? If so, what type of excercise?
    On and off. Ice hockey, jogging, threadmill, tennis, and sometimes with weights.

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    No specific diet.

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

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

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

  1. February 2012
  1. How old were you when you quit, and WHEN (date) did you quit?
  1. February 2013

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

  2. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    1/4 Finasteride

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

  4. How long into your use of Finasteride did you notice the onset of side effects?
    Libido went down a bit at first, but seemed like no big deal, especially since the doctors said the side effects would wave off a few days after stopping the medication. But one day (after a year on the drug), I could get it up, even though all conditions were there for a great night !! It freaked me out, and it took a day or two for me to put my finger on it and finally cut the pills.

  5. What side effects did you experience while on the drug that have yet to resolve since discontinuation?

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

Mental
[X] Emotional Blunting / Emotionally Flat
[ ] 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
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] 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
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[X] Other (please explain)
A little bit of brain fog, but only in the first few weeks of quitting the medication.

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    Exercice, Tribex, L-Arginine, Maca, fish oil, Zinc.

  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)?
    Nothing abnormal in blood tests.

  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’ve been on and off this site for the past 2 years. There’s not much I can add to everything that’s been said, but as a thank you to every one who wrote on this site, I wish to share my story and hope some will find comfort.

I took Fin for a year before realizing that this shit was realy getting to me. It is hard for me to figure wether it came suddenly or progressively (I wasn’t paying much attention to my symptoms), but I remember very clearly that one night, there was no way it was going up ! It was brutal, and I decided to quit the drug. This was February 2013.

The next 4-5 weeks were litterally like hell. I had a complete loss of libido and there was absolutely no way of getting an erection. The company where I worked had the hottest receptionist ever, and I remember looking at her like if she was my sister or aunt. Strangely enough (even though there was no chance of that happening), it freaked me out thinking that she could look at me and say “I wan’t you right here, right now”, and there would be nothing I could do with that !!

I had never realized how important libido was in our lives. And losing that was actually like losing the will to live.

I almost started posting on this forum back then, but didn’t fill the requirements to post …!

The weeks and months went by and I try different ways to get thing back to normal. Mainly, I tried natural pills (listed above). I must say that some worked pretty well and sex drive, but didn’t do much for ED. One thing that helped me alot (physically and emotionnaly) was (and no, I wouldn’t say this to anyone other than on a forum under an anonymus nick) the use of a penis pump! I purchased the bathmate after noticing that penile shrinkage was starting. Just the fact of being able to have a erection (even if it is mechanical) was really helpful. Moreover, penile shrinkage stopped at that moment, and I was able to bring it back to it’s normal shape.

I also went accross most of cd nuts (member) thread and was fairly encouraged by it. But looking at everyone trying he method with no (or little) results made me realize that the time is probably the only solution. Going through this forum, I realize some people talk about 5-7 years to recover. The more time passes, the more I think that probably makes sense.

It has been a little over 2 years for me. I would say I am about 50-75% back to normal, fluctuating week-by-week. I can’t get as hard as I used to, and can’t hold it like before, but there is definite progress in the long run. I keep sex / masterbation to once every 5-6 days to get things going again. Even when it’s been a few days, it takes physial stimulation to get it up, but once it’s up, it seems ok.

Anyways, I guess that’s pretty much what I wanted to say. Oh yeah … and just as if my life didn’t suck enough, my wife (15 year relationship with 2 kids - 4 and 6 year’s old) was diagnosed with Multiple Sclerosis this year … hopefully that will help cheer some of you who though their life was the worst.

Cheers. And best of luck to all of you. Again, I trully believe we are just in a (REALLY) bad phase. Things will pick up, but we all need time… take care.

2 Likes
#2

Just to add something …

I’ve noticed an increase in libido in the last few weeks. I would say I’m closer to 75-80% in sex drive, although still lacking with ED aspects.

I didn’t realize until just now, but figured that it’s probably due the fact that I have re-started exercising. About 3 weeks ago, I started jogging, just about 15-25 minutes every other day. I’m convinced it has something to do with this, and it’s also positive on humor.

Don’t know if this also has an impact, but we decided to cut out gluten from our diet, mostly for my wife’s multiple sclerosis condition. The more I read about gluten, the more I realize how it can have a big impact on some people. In any case, it can just be positive to go gluten-free.

Feel free to ask any question …

#3

Wow … Reading my previous post makes me wonder if I was over confident, or if I was actually feeling that well ?!

Either way, things have been different for the last 3-4 days. I don’t know what are the exact caracteristics of a crash, but I know for sure that my symptoms are worse than they have been in a long time.

This past week, I have met a new girl (my first relationship is over - surprisingly not due to PFS). On the third date, we ended the night in bed. I wasn’t sure how that was going to turn out … this girls was hot … porn-like hot ! An amazing body, shaved … the best I have seen ! Anyways, what had to happen happened … I just couldn’t get it up! There was no way. Not even close. I had to tell her about PFS … and yup, that’s down the drain! The worse is seing how discourage she was… this could have been a really nice relationship.

But what really worries me is how hard the symptoms hit me back. I have been off 2.5 years now. I exercice and eat well, and thought everything was headed in the right direction. But now this … it’s been a few days since that happened, and I’m feeling as low as you can think. No libido whatsover.

I have to say I had a tough week though. I had 2 bad nights sleep and drank quite a bit of wine. But I’m 38, this should not be a significant cause for complete ED !!

How long do crashes last ?? Has anyone ever had a crash after 2.5 years?

Anyways, there’s not much more I can do. I decided to forget about pills, vitamins, and whatever. I just want to eat healthy and exercice. Nothing has been proven to help so much, so might as well be as natural as possible.

1 Like
#4

Follow up on my sides …

It’s been 20 days since I last had an orgasm. Since then, libido has been very very low… 99% of the time, its 0-10%. It happened 2-3 times that I had a kind of surge for sex around bed time, but nothing would have happened because of serious ED anyways.

I have been on 0 pills or vitamins for th last month or so. I’m confident that Vitamins (Centrun), Zinc, Maca, etc. couls have a very positive impact, but I’m sticking with the natural way for now. I don’t feel like forcing it, and prefer to let my body heal rather than work on symptoms. Anyways, there are no woman in the portrait right now.

I wonder how lon this could last …? And I thought I was making good progress…

Oh, by the way, I went to my pharmacy to get the exact dates I used Propecia. Turns out I was off by about a year ! So I’ve actually been off for about 18 months (since february 2014). Don’t know if that’s good or bad news…

The only thing I am doing consistently when my sides are this bad is the penis pump. I think this is an absolute must to prevent / repair penile shrinkage. It allows to have an erection for a couple of minutes a day. Its not convenient, but I am convinced it really helps. I believe that anyone who is concerned by penile shrinkage and is not getting any nocturnal erection should be using this…

Anyways, that’s it for now. I will be posting updates as I go along.

Oh … and one last thing! There seems to be quite a lot of people coming to this site. I wish that all of them would post! Don’t need to be a regular, don’t need to be the worse or the least affected, but I think everyone benefits of other user’s experiences. The more we share, the better.

Cheers.

#5

22 days without ejaculation … and just woke-up 2 days in a row with a morning wood (had not happened in a long while). I will keep going on with my dry spell as long as I can and see where that leads.

#6

5 straight days with nocturnal erections. Although I don’t feel much sex drive during the day (still pretty close to 0), it feels as though it increases overnight and early in the morning (to something like 30%). This morning I was able to get an erection with no physical stimulation.

Still very far from being out of the woods, but happy to see my body can still generate something, especially considering that I am under absolutely no medication, vitamin or protocol of any kind.

#7

Stop the silliness, I am 3.5 years and now I have full sensitivity back and my libido is near 100% I masterbated all the time, it often led to upswings. Ups and downs for months and maybe years but you too will get better. So go touch yourself and enjoy!!!

#8

Hahah! Thanks for a good laugh… I’ll be sure to let you know as soon as I do. :wink: Always a treat to hear from people who recovered, no matter how long it took.

#9

Progress!

I am hearing your story and will continue to listen. I hope you continue to share. I was abstinent for about 2 1/2 weeks and it was one of the few times I saw improvement…
It eventually subsided so I gave in but I think there is something to it. I can see that Finatruth took another road there ahah but maybe it helps I don’t know. All I can think
is the system is obviously out of whack… after an orgasm there is a rush of T and DHT… I’m sure this isn’t helping promote balance if the body is sensitive to these things.
On the other hand I have no idea and can only speculate. I’ve been like this now for just over a year… and there has been 2 or 3 times where I felt 100% for a day or two and
then back down to the bottom… hopefully that’s a positive sign the body is trying to recover but it’s anyone’s guess

#10

Well, I’m back ! I’m here to state where I am after 23 months off.

I have seen very little (if no) improvement since the last 6 months. It doesn’t help that my life is a living hell … I am moving in a new place this week after a separation with my spouse, who not only was diagnosed with Multiple Sclerosis earlier this year, but was also found with a tumor in the saliva glands … she is getting a biopsy next week.

This said, my side effects remain almost unchanged. I have only been impacted by sexual sides (ED, extremely low libido, and ejaculation issues), but I can’t say there has been any noticeable improvement. I have high hopes for the upcoming year as several members mentioned that things started getting better after the second year. If I still feel the same in a year from now, I will start thinking of alternative methods. For now, I’m still looking at a way to heal as naturally as possible. All I have been doing to date is:

  • Centrum (1 pill a day)
  • Vitamin D (2000 IU per day)
  • Picked-up weight training again last week after several months off)
  • I avoid sex and masturbation (no interest, so I can go for weeks without it). Still don’t know if this is a good thing, but several people said they crashed after too much sex.
  • I have also cut out milk and sugar (which is a big deal for me) in the last 2 days, but I’m willing to continue as long as required. I cut out Nutella in the morning (replaced by eggs), and approx… 4-5 chocolate chip cookies per day! Can’t hurt.

And finally, I will give acupuncture a shot. I should start with the next few weeks and will post updates here.
Also, I have a new theory of a linear recovery rate of approximately 1 – 1.5% per month (I will post a new topic). After two years, I should be around 25-35%, which could make some sense. On a day-to-day basis, I feel more like 10% (because it is so frustrating when comparing with Pre-fin). But when I think about it, since I could still have an erection (although with constant stimulation) and an orgasm at least once a week, 25% is potentially adequate. Insufficient to start off something new (giving the performance anxiety, etc.) though, which is my biggest fear.

I didn’t even try to have sex in the last 6 months. My last experience was just too awful. I have been on dates, though … My last date was an absolutely amazing girl that could have been the girl of my dreams. When she showed interest in seeing me again, I had to make a lame excuse not to have to see her again, and god forbid, have sex ! Going out on a date makes me pretend that I’m almost normal, but I don’t see the day when I will be able to have sex again. Moreover, I’m 38 and dating 35-40 year old girls, who peak in libido at that age !! Nothing to help me … 40 year old girls know what they want, which becomes incredibly intimidating.

That’s about it for now. Unfortunately nothing very encouraging, but I guess I could have seen that coming.

#11

Just booked an apointment for acupuncture next monday. The acupuncturist said we could start with a liver detox, and then treat the libido issues … worth a try.

I’m also trying to book an apointment with and endo. Not sure if there’s anything he will suggest, but anything that keeps my hopes up is good news these days.

It’s unbelievable how happiness is linked with libido and sex … it’s actualky why we do anything!

#12

I just had my second acupuncture treatment this morning. I have changed a few things in the last few weeks, and it think I’m having positive results. Nowhere near recovery of course, but a noticeable improvement. I would say maybe 10-20% improved (this week only), but I doubt the results will be sustainable.

Recap of what I have been doing :

  • Diet (eat very well and cut out gluten, milk and sugar as much as possible)
  • Exercice about 3 times a week with weights
  • Centrum + 3000 UI vit D + fish Oil
  • Sexologist about every 3 weeks (helps me stay mentally sane)
  • Acupuncture once a week - will probably limit myself to 4-5 times at most.
  • Cryotherapy (once, last week). Will not go back to cryo, but may persue by taking a 3 minute freezing bath once a week.
  • Abstinence (no more than once every 3-4 weeks) - by far the easiest one of all.

And finally, my first apointment with an endo is next monday (Jan. 25). I doubt he has anything miraculous for me, but I would like to come out of there with a very low dose daily Cialis prescription to help me get some confidence back with women. At this point, there’s no way I would dare to try getting into bed.

#13

I had my endo apointment today. He was very nice and understanding, and did not deny the existance of PFS, although he said there might be some other problem that we need to target. He also said he had already treated other patients with this condition, but admitted he was not able to help any of them…!

He looked up what seems to be an online medical resource center called “Up to date” to see if there was anyone in the worldwide medical community that was a PFS expert, but unfortunately (and not surprisingly), there was not.

I spent about an hour in his office. He went trough a series of questions and physical exam. He suggested that we start with the following blood tests and take it from there (sorry, I only have the french names):

  • Glucose
  • Phosphatase alcaline
  • AST
  • ALT
  • GGT
  • Cholesterol
  • Tryglycerides
  • LDL + HDL-Cholesterol
  • PSA
  • Cortisol
  • LH
  • FSH
  • Estradiol
  • Prolactine
  • TSH + T3 libre + T4 libre
  • Testosterone totale
  • Testosterone biodisponible

He didn’t check “free testosterone”…? Don’t know why. Should I check it off on the paper he gave me?

There was nothing wrong with me at this point from a physical perspective. He also doubted the fact that it had anything to do with the gut, as he said there would be other symptons (diarrhea, stomach cramps, etc.).

And finally, he prescribbed me a daily dose 5mg Cialis (that I would probably break in half and go for 2.5mg). I will hold on to the prescription for now, and only use it if I feel like getting into a relationship … kind of like a safety net. At this point, there is no way I could perform sexually. I’m still hoping things will start turning around this year, as I am entering year 3 of post finasteride.

I will post my blood test results when I get them (within about 3-4 weeks).

#14

hi. testing for free testosterone is useless since it won’t accurately reflect the real T levels. you need albumin, shbg and total testosterone tests to accurately calculate the bioactive testosterone circulating in plasma. Use this website to calculate it once you have results for those tests:
nebido.com/tools/index.php/ … calculator

#15

Thank you vanquish, I appreciate the input. The Albumine isn’t checked off on the paper… do you think I can just check it off without the Dr. knowing ?? :slight_smile:

#16

Geeez … I just went for my blood test in a private clinic this morning, but I would have cost around 1000$ (I have lousy insurance since I broke up with my girlfriend) !! I will be going to a public one at lunch time, which is free.

#17

So my last trials have been acupuncture (3 times), and I’m completing a 3 day fast. No real improvement. I will be getting my blood test results in about 2 weeks, but I doubt anything will show up.

The only good news nowadays is that I will be meeting in person with a guy from the board who has been a sufferer for the last 5 years or so. We talked on the phone and he sounds like a really nice guy. After 2 years in the dark, it will be really nice to talk face-to-face with someone who is in the same situation. He’s involved in the canadian lawsuit, so it will be interesting in that aspect also.

I find it hard to stay positive these days. Seems like we don’t have or fate in our hands.

#18

I just met with a guy from the board in Montreal. He has been a PFS sufferer for almost 8 years, but rarely posts on the board. I was hoping to get some form of encouragement, but unfortunately he hasn’t had much (if any) improvement over the years. He still suffers from absence of libido and ED among other things.

Nevertheless, it was great to finally talk with someone who understands me, although it also made me see how deep I was in …

He seems to be living well overall, but we all know that living well with PFS can only be like 60% of living well Pre-PFS (at best).

Maybe I am unrealistic, but I still think there is a chance that my body will heal on it’s own, given a little help (diet and exercice). I have high hopes for this third year, and I really hope that things will start improving this summer with sun exposure. There HAS to be some improvement in the long run, otherwise life is just not worth it.

#19

After the last 7 months being really bad, I am finally having a god week ! My mood is much better, my nocturnal erections and morning wood are stronger and more commun, porn can make me hard within a minute and I can anticipate taking pleasure in sex.

I know it probably won’t last and I’m not keeping my fingers crossed, but I’m enjoying it for now! It’s good to know that things can evolve, and I will think about this moment when I feel depressed.

The only thing I changed was that I cut out all vitamins and supplement, excep for Vitamin D which I doubled the dose. I am now taking 3000 UI in the morning and 3000 UI at night for a total of 6000 UI daily. Nothing else at this time.

We’ll see how things evolve. If it sticks for a couple of weeks, I will consider going back on dates.

#20

Blood test results:
viewtopic.php?f=4&t=10943