Crashed and burned, please help!

Member Stories
#1

  1. Where are you from (country)?
    UK

  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 - Propecia side effects

  3. What is your current age, height, weight?
    26, 5"11, 12 stone

  4. Do you excercise regularly? If so, what type of excercise?
    Yes, football, squash, running, gym (weightlifting)

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    Meat eater, generally quite healthy

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

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

  8. How old were you, and WHEN (date) did you start Finasteride?
    25, Nov 2012

  9. How old were you when you quit, and WHEN (date) did you quit?
    26, August 2013

  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?
    Propecia and generic fin

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
    Ranged from 0.5mg a day to 1mg a day

  13. How long into your use of Finasteride did you notice the onset of side effects?
    8 months

  14. 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
[ ] Watery Ejaculate
[x] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[ ] Suicidal Thoughts

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] 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
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[x] Other (please explain)
Disrupted sleep

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    ZMA

  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)?
    N/A

  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.

Started taking propecia in Novemeber of last year. Had some slight ball ache at first but that subsided very quickly and it wasn’t until the start of August when the real side effects kicked in - very weak erection, low sex drive and very low volume of semen . I quit cold turkey after about a week of experiencing the sides. Over the next 2 1/2 weeks I saw a pretty near complete resolution of sides. Sleep was very disrupted still and morning wood wasn’t as frequent/strong but waking erections were right back on track, I was as horny as ever and ejaculate was much in improved. Then one day I noticed my testicles were much tighter, it was harder to achieve an erection and my semen had become very lumpy. The next day this was worse again. And the next day I was completely impotent. I haven’t a single erection since and have no interest in sex. I’ve managed to make myself orgasm once (without a hard on, weird experience) and my semen was almost non-existent.

My GP did a very basic set of blood tests. My testosterone was ‘lower’ than when I’d had a previous blood test earlier in the year but as it was apparently still in normal range, she wouldn’t take it any further. She implied she thought it was psychological and refused to make a referral.

Can anyone please tell me somewhere in London I can get a comprehensive set of hormone tests done? I’m happy to pay but the private clinics I’ve found only seem to do very basic sets that don’t include free test etc. Also, a decent doctor sympathetic to the cause would be good.

#2

Man, sorry to here you’ve been hit by the side effects.
The number of UK guys on this site keeps on growing.

Andrew Rynne is the only doctor I have heard of in the UK or Ireland that recognises PFS.
viewtopic.php?f=12&t=7185
I have been to see him and he is very helpful.

One other possibility;
My previous doctor recommended that I go see Professor Monson, who is based in London.
harleystreetguide.co.uk/doct … id43=26892
I would really like to see him, but cannot afford any private consultations just at the moment.

Not sure if Professor Monson has seen any PFS patients or if he would be in anyway sympathetic, but he certainly does appear to be an expert endocrinologist IMO.
Hopefully he would be willing to arrange some tests for you. He is based in London.

Keep us updated

#3

Appreciate your reply nominam.

I’m in a similar boat in terms of being able to afford a private consultation. I just feel so helpless though. It’s really affecting my life in so many ways and although I’m trying to be healthy, exercise etc, this seems like quite a weak, futile response. I think I’m going to have to try and find the money from somewhere.

#4

I think you would be best to make an appointment with your GP and ask for a referral to an endocrinologist.
Or maybe you’ve done this already?

#5

Yes, she refused following the results of the very minimal tests. She hadn’t even heard of Propecia, ha! Generally a big fan of the NHS but get the feeling it’s not going to be much help to me in this instance. Will change to the other GP practice in my area and see if I have any more luck there.

#6

Hello. By distributed sleep do you mean frequent awakenings throughout the night and very light sleep because I’ve been going through the same thing as well. In addition to insomnia.

#7

Yes. I don’t have too many problems getting to sleep initially but will generally wake up briefly every hour or so until about 4am, then don’t get any decent sleep from then onwards. I’ll toss and turn, might slip into a very light snooze but soon awake again. Waking up is often accompanied by muscle twitches and discovering I’ve sweated buckets (especially from my legs, weird!)

Mentally, not getting a good night’s sleep is becoming quite tough and increasing my stress/anxiety. It’s often proving annoying for my girlfriend as I wake her quite often when trying to get back to sleep. Combined with my inability to achieve a decent erection, propecia has turned me into quite a catch.

#8

Yeah I have the same problem with muscle twitching as well. I basically light sleep for 10-20 minutes at a time and then twitch awake, all of this repeats itself throughout the night and when it’s time to wake up i’m a tired/anxious/confused mess. This aspect of pfs has basically destroyed my life. Also my erections are pretty much nonexistent at this point and i’ve gained about 50 lbs since this started. Please tell all your girlfriend’s friends that i’m single and ready to mingle!

#9

Some really weird things happening with my balls. They were clinging to my body for a couple of weeks but suddenly dropped earlier this week and are now hanging very low and are extremely saggy. This has coincided with orgasm becoming duller and ejaculate even smaller. All in all, its not looking promising. Was crying a lot but now just feel a bit shell shocked.

Have made another GP appointment. Not leaving without a referral to an endo.

#10

How has your sleep been doing?

#11

Worse than ever…

#12

Flaccid penis has become ‘dented’ on the right hand side, causing a loss of girth but also for it to lean when it hangs. I think generally my penis has shrunk slightly in it’s flaccid state,now hangs just over half way down my very saggy scrotum. Up until a week ago, it had been hanging way past it since puberty. Don’t think it’s all down to the extra sag on the balls.

Psychologically this is proving the hardest yet to deal with. I remember earlier this year when everything was going fine on fin, reading an article about some guy that said propecia had shrunk his genitals. I laughed and thought he must be crazy. Now that person is me. Seriously, how the fuck did this happen? I can’t believe Ive destroyed my own life like this. I didnt realise how happy I had been until now. I want to be optimistic but there is so little hope reading what’s out there and other people’s experiences. Where do people find the strength to perservere knowing that this could go on for years. I’m struggling.

#13

Sorry to hear that man, same here. a couple here on suggested apple cider vinegar before bed for better sleep. Tried a very small amount last night and didn’t notice much of a difference. Going to continue that for about a week or so and see if it helps at all.