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Where are you from (country)? Australia
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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?) Via the site pfsfoundation.org/resources/
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What is your current age, height, weight? 39yo, 178cm, 81kg
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Do you excercise regularly? If so, what type of excercise? Yes, 4 times per week. Mixed cardio and weights.
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What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? No restrictions, eat everything including health and junk food.
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Why did you take Finasteride (hair loss, BPH, other)? Hair Loss
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For how long did you take Finasteride (weeks/months/years)? 10 years
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How old were you, and WHEN (date) did you start Finasteride? 2001
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How old were you when you quit, and WHEN (date) did you quit? Finished in 2011 @ 34 years old
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How did you quit (cold turkey or taper off)? Cold Turkey
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What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic? Proscar and Generic and Dutasteride for about 1 year (in about 2004 for 12 months in substitue on fin)
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What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1mg day
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How long into your use of Finasteride did you notice the onset of side effects? 4.5 years after quitting
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What side effects did you experience while on the drug that have yet to resolve since discontinuation? I had watery ejaculate while on the drug but that reverted soon as I stopped. Depression and blunted emotions while on the drug and continued to this day. I developed very low /no libido 4.5 years after ceasing the drug.
Put an X beside all that apply:
Sexual
[x ] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ x] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[x ] Emotional Blunting / Emotionally Flat
[x ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfullness
[x ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ x] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[x ] Severe Depression / Melancholy
[x ] Suicidal Thoughts
Physical
[ ] 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
[ ] Other (please explain)
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What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? none
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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)? never got baseline tests so don’t know what I was before
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Anything not listed in the above questions you’d like to share about your experience with Finasteride?
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Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
Hi All, this is my first post. I took Finasteride for 10 years and quit 5 years ago. 6 months ago I developed a total loss of libido literally overnight and after recently visiting a specialist he said I most likely have PFS. I had never heard of PFS until he mentioned it and since then have done my own research on the condition and its brought me here.
Firstly, what a sad revelation it was to find out about the life destroying side effects many people here have experienced. My heart goes out to everyone affected.
From all the posts I’ve read most sufferers seem to have developed PFS while still on the drug or immediately after quitting. Is there anyone who has developed PFS years after stopping the drug? I am still trying to work out if I have PFS or something else. When I visited the Urologist here in Melbourne he specifically asked i’d taken Finasteride in the past. I said yes and he said well you most likely have PFS and there is no cure. Even when I told him it was 5 years ago he said that it often has delayed onset and he sees many men now like me who come in for exactly the same reason - loss of libido and former users of Finasteride. Aside from his heartless bedside manner, he didn’t really give me any more information on it.
I do know that when I got the sudden loss of libido I was under extreme stress, the most I had ever been under in my life due to a full time high responsibility job, starting a new website business and an unfulfilled personal life. I wasn’t sleeping well and got a prescription from my doctor for the sleeping tablet Stillnox SR (slow release). Although I had taken them for 1 or two nights in the preceding months I hadn’t taken them consecutively. In September 2015 I took Stillnox every night for 6 nights and at the end of this period noticed I had zero libido. At the time I thought it was normal as I was so stressed but it didn’t come back. Now I know 6 days is virtually nothing in the use of Stillnox sleeping tablets and I’m sure many other people take it for much longer without libido loosing side effects but given the circumstances I feel its important to describe the conditions around when the problem struck. Personally I suspect the Stillnox is what caused the problem, or it somehow triggered the cause, or triggered PFS if thats what I now have. I do remember in that super stressful week I was in a semi dazed state at night, not really sleeping, just laying there with anxiety and a humming in my head in a half asleep half awake state. I remember thinking ‘what the f&*k is this doing to my head it can’t be healthy’ then 2 days later bang, this happens.
Previously my libido was always a 10/10. I just thought of a girl sexually or see one in the street and I have an instant hard on. Now I havn’t had a spontaneous strong erection for 6 months. I have had a few times where I got a half erection but it felt so weak and went quickly. If I watch porn and concentrate I can get a hard on and wank to completion but I really need to concentrate. I feel like I could stop watching at any time and go do something else and it wouldn’t bother me because I am just not interested. This apathetic feeling is such a destroyer of happiness.
The only real relief of symptoms I had was approx 4 weeks after it first onset, I was overseas for work and got an extreme cold (or a mild flu) and that same night I my libido was back to 100%, I had hard erections and so I celebrated what I thought was the end of the ‘low libido stress period’ with a wank. An hour later I was still horny so had another wank. For the first time in a moth I felt normal again. I returned to Australia the next day and noticed that over the following week my libido gradually dropped back down to 0 again, and has stayed there since.
I have read that some sufferers believe it is an Autoimmune disease because suffers often report a relief of symptoms when they have flu. When I read this it resonated perfectly, and also strengthened the case that I do have PFS.
Has anyone on the forum had such a delayed onset of the condition? I am desperately trying to work out what has happened and what I may be able to do about it.
I do also suffer memory fog, depression and anxiety but I have for many years, even before I started taking Fin. I’m not sure if Fin has made those worse but I can’t hold it totally responsible.
I have had blood tests twice in the 3 months following onset of the problem.
In both cases my Testosterone level was normal but my Free testosterone was on the very low end
Testosterone 15.6 nmol/l (normal range = 8.0 to 30.0)
Free Testosterone - first test = 168, second test = 189 pmol/l (Normal range = 170 to 500)
SHBG (Sex Hormone Binding Globulin) 81nmol/l (Normal range = 17 to 66)
FSH = 5 IU/L (Normal 1 - 8)
LH = 2 IU/L (Normal 2-8)
Prolactin = 4.4 ug/l (normal <20)
Oestradiol = 129 pmol/l (normal <150)
Progesterone = 1.8 nmol/L (normal <4.1)
The doctor said the SHBG was high because it was probably trying to convert more Testosterone into Free Testosterone because it was low. That’s what SHBG does apparently. I know free testosterone was within the range on the second test but only just, both results were at the lower end and I’m pretty confident if I had of been tested a year ago I would of got near 500.
Nothing else in my life matters now, I am not married (but want to be and want a family), and am planning on quitting work, halting the business, and going to Thailand for a month holiday. I am booking into a health retreat to go on a 7 day de-stress program followed by a 7 day detox problem in the hope it will help. Its expensive but I need to throw everything at this problem because if I can’t overcome it then nothing else will matter anyway.
What I’d like to do is try and diagnose if I do actually have PFS or something else. Can anyone read into my blood test results and see any clues? Are there patterns sufferers have with blood test results (or other tests) that are consistent?
Has anyone had improvements in loss of libido and was the improvement gradual or overnight?
Interested in any help or advice anyone can give.
Male, 39 YO, Melbourne, Australia.