Help & Advice Needed Please

Here is my propecia story…

Prior to starting propecia on 18/04/13 I was under imense stress due to my hair loss and recent relationship breakdown. I took 2 weeks worth of 1mg Propecia for 2 weeks.

After about a week I noticed sexual side effects.

Now 1 month on, I am totally impotent, no sex drive at all, feel exhausted constantly, my penis feels less full, I have red tip and wrinkled skin on my penis, penis seems less full, spasms in my anus and just generally feel very low, brain fogged !!! I also have pain in my penis shaft which is there constantly with my anus spasms.

Any similar experinces on here or advice and possible thoughts on any positive recovery rates or expectations?

EDITED:

  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

  3. What is your current age, height, weight?
    Age 36, 6’0" - 12 stone in weight

  4. Do you excercise regularly? If so, what type of excercise?
    Run about twice a week

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    Try to eat healthy, fish mostly with Veg, occasional Pizza

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

  7. For how long did you take Finasteride (weeks/months/years)?
    2-3 Weeks

  8. How old were you, and WHEN (date) did you start Finasteride?
    36 - 18/04/13

  9. How old were you when you quit, and WHEN (date) did you quit?
    36 - 02/05/13

  10. How did you quit (cold turkey or taper off)?
    1mg daily then 0.5mg to finish

  11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    Propecia 1mg

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

  13. How long into your use of Finasteride did you notice the onset of side effects?
    Within First Week

  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
Loss of Libido / Sex Drive
Erectile Dysfunction
Complete Impotence
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate
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
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
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)

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    ciprofloxacin (Suspected Prostate Issues), naproxen for pain in penis (Anti-Inflammatory)

  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)?
    Not yet tested

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?
    Only wished I’d never taken it

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

Prior to starting propecia on 18/04/13 I was under imense stress due to my hair loss and recent relationship breakdown. I took 2 weeks worth of 1mg Propecia for 2 weeks.

After about a week I noticed sexual side effects.

Now 1 month on, I am totally impotent, no sex drive at all, feel exhausted constantly, my penis feels less full, I have red tip and wrinkled skin on my penis, penis seems less full, spasms in my anus and just generally feel very low, brain fogged !!! I also have pain in my penis shaft which is there constantly with my anus spasms.

Any similar experinces on here or advice and possible thoughts on any positive recovery rates or expectations?

I have the same symptoms. I have has them for over 3 years now and they are just as bad. Penis shrinkage is actually getting worse and worse.

I have suffered here massively from the effects of this drug, i’m 35 and for the past 2 weeks my penis and scrotum are wasting away, i am completely impotent.

My main question here that i need help with please, is how do YOU fellow sufferers cope to stay alive each day with severe symptoms? I feel zero emotions, probably slightly despessed but generally i feel like a zombie.

Please respond. I would really like to learn others coping techniques.

Within the next year there will be major research done into our condition.
The PFS Foundation started earlier this year and its sole purpose is to help us.
You will get better over time.
You have us for the bad days.
At some point in the future you will be cured.
Sex after we are cured will the best sex ANYONE on Earth has ever had.
Justice is being sought against those who made and marketed this poison as a safe treatment.

I was really glad to read the Bloomberg article. I understand finasterside may be important for men with serious prostate issues or something life threatening, but using it for cosmetic purposes a more detailed process needs to be undertaken. An endocrine system crash is unbelievably intense. Imagine becoming another person over night.

After been off Fin for 5 weeks now after experiencing side effects of all kinds, firstly I was stupid and did not contribute these side effects to Fin so having experienced loss of libido, lesser erections I took myself to my GP and described my symptoms which included, red rash on tip of penis, slight pain in urethra and spasm in perineum, she prescribed me ciproflaxin (2 Weeks Worth), on taking these and no more Fin, my symptoms got worse on finishing the Cipro, more fatigued, impotence and the start of insomnia.

for 2 weeks, no sex drive, no erections at all, terrible stomack ache.

Now on 11/06/13, awoke after my average of 2 hours sleep and night sweats to find a semi-erection.
12/06/13 - Woke again after 2 hours sleep all night with semi erection
Decided on daytime of 12/06/13 to try and masterbate as I could not achieve erection at all prior to 2 days ago, and hey, I managed a full erection !!!

I know I’m far from right though, I still have insomnia, fatigue and all over body spasms and having to take amitriptyline to help with my sleep and axiety attacks which I feel have helped a little but still very dizzy during the day or whilst moving or in a vehicle, blurred vision etc and my hearing seems very acute, which is why I struggle to sleep as I seem to be able to hear a pin drop and my racing heart beat.

Any way, only positive I have is slight night time erection and ability to achieve one on my own !!!

I am looking to aid myself to some sort of recovery having suffered massive side effects of all kinds.

Read my story here…

www.propeciasideeffects.co.uk/my-propec … story.html

My questions are these…

  1. What is best to drink throughout the day? Water?

  2. What are the best foods to eat and avoid?

  3. How many times per week/month should sufferers masturbate?

  4. Is there anything we can do to improve penile tissue damage from this drug such as shrinkage?

  5. Is running/jogging good for us?

  6. Has anybody had any success returning libido issues?

  7. Has anybody had vision problems and if so, did they improve?

  8. What supplements work best if any or is it best to completely cease taking anything?

  9. Is it best to eat more or less, little and often?

Thanks in advance, hope to hear back from you soon.

Take care fellas, hopefully one day we can be cured or at least back to normal as normal can be.

I’m having a bad day today and need you guys to show me some light at the end of the tunnel???

Will I get better?

I’m brain fogged 24/7
Wrinkled penis
Feel confused
No drive or motivation.
Feel like a zombie
Insomnia
Weak/Fatigued !!

I’m really losing hope.

I have no family around me. I really need some help and support.

Any kind of lift or positivity please???

I need you guys more than ever.

Most of my symptoms are mental.

I have nothing else left to give.

Please tell me your advice.

I’ve been like this going on 3 months now !!!

PLEASE HELP ME, I’m BEGGING

Man we all know what you are going .
There was times that a lost hope, and i even came to a point that i thought about trying hard stuff
But then i felt better, and now i think i am slowly slowly recover.

And i think the pfs foundation will help us.

Be strong man.

Thanks Jonson but I’m a lost soul, I feel life is just passing me by as i sit here alone trying to understand whats going on with my brain and body.

You can try Progesterone cream. For me it helps for mental side effects.

Where do I get it from and how do you apply it please?

Is this not mainly used for and by Women???

It is free available. Amazon!? Skin - belly.

I would advice not to use progesterone cream. It will make you feel good initially, but it will worsen your symptoms after some days. Be careful.
Try to concentrate on your daily activities and don’t stay at home.

Why shouldnt he try?

Because there have been many bad reactions to progesterone. Some of them extremely bad.

viewtopic.php?f=5&t=7855&p=70861&hilit=progesterone+experience#p70861

I managed to recover from the fatigue and brain fog. You should try taking B12 that helped me over time.

Also make the most of the good weather going out in the sun should make you feel some what better.

  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

  3. What is your current age, height, weight?
    Age 36, 6’0" - 11.5 stone in weight and declining due to muscle wastage !!!

  4. Do you excercise regularly? If so, what type of excercise?
    Run/Jogging about three a week

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    Try to eat healthy, fish mostly with Veg, occasional Pizza - No Appetite

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

  7. For how long did you take Finasteride (weeks/months/years)?
    In 2010 Took For 3 Months and had no side effects except depression & suicidal thoughts which I never associated with Propecia, Then 2-3 Weeks April 2013

  8. How old were you, and WHEN (date) did you start Finasteride?
    33 - September 2010 - November 2010, then April 2013 for 3 weeks.

  9. How old were you when you quit, and WHEN (date) did you quit?
    36 - 02/05/13

  10. How did you quit (cold turkey or taper off)?
    1mg daily then 0.5mg to finish

  11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    Propecia 1mg

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

  13. How long into your use of Finasteride did you notice the onset of side effects?
    Non First Time Except Depression (Suicidal) Not Associated With Propecia Then Within First two Weeks The Second Time On The Pills.

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

ZERO Libido, Impotence, Anxiety, Insomnia, No Emotions, No Love Towards My Own Children!!
Jesus where do I stop…

Put an X beside all that apply:

Sexual
Loss of Libido / Sex Drive (A Look At A Women Like A Tree)
Erectile Dysfunction
Complete Impotence
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate
Reduced Ejaculate
Inability to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
Emotional Blunting / Emotionally Flat (Hug My Kids & Feel Nothing)
Difficulty Focusing / Concentrating
Confusion
Memory Loss / Forgetfullness
Stumbling over Words / Losing Train of Thought (Walk Into A Room & Cant Remember Why)
Slurring of Speech
Lack of Motivation / Feeling Passive / Complacency (No Longer Enjoy Watching My Team Play)
Extreme Anxiety / Panic Attacks (Prefer To Stay Indoors)
Severe Depression / Melancholy
Suicidal Thoughts

Physical
Penile Tissue Changes (narrowing, shrinkage, wrinkled) (Shrunken Wrinked Penis)
Penis curvature / rotation on axis (This Would Happen After Ejaculation When I Could !!!)
Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
Weight Gain (WEIGHT LOSS !!!)
Gynecomastia (male breasts)
Muscle Wastage
Muscle Weakness
Joint Pain
Dry / Dark Circles under eyes

Misc
Prostate pain (Spasms In The Anus / Prostate)
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)

[b] Excessive dribbling of urine after urination, like urine still stuck in Urethra. Leaks out when I sit down causing wet under wear !!! Dry Skin In Eye Brows & Sides Of Nose, muscle spasms, twitching all over body… Too Many To Mention

Loved music & Movies, now I have NO INTEREST (I CURSE MERCK!!!)[/b]

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    ciprofloxacin (Suspected Prostate Issues), naproxen for pain in penis (Anti-Inflammatory)
    Tamazepam to treat Insomnia.

  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)?
    My Total T Level Is ‘16’

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?
    Only wished I’d never taken it, wake up everyday and want to punch myself or hope its all a dream.

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

I am 36 years of age from the Uk. I am currently employed by one of the Emergency services but had to take sick leave due my usage of Propecia. Prior to taking Propecia I was a very happy, healthy, outgoing type of guy with 3 beautiful children, and football (Soccer) was my passion !!!

Here is my propecia story to date.

3 years (2010) ago at age 33, I noticed I was losing my hair and been quite proud of my looks and appearance I started scouting the internet for a possible cure. This was when I stumbled across Propecia which stated ‘MAY’ cause sexual side effects. Been fit and healthy as I was, I decided to visit my GP and ask questions about the medication. He said fine I can write you out a prescription for 3 months worth and all he said was that it may carry a small chance of sexual side effects such as Erectile Dysfunction. So I went to the chemist and started taking my first pill and all seemed well until about 6-8 weeks into taking the pills. This was when I started to suffer severe depression with suicidal thoughts and became very tearful all the time which was completely out of character for me so I went to my GP and explained my situation and he wanted to prescribe me some anti-depressant tablets which I declined. My Father was that concerned for me, he called the mental health crisis team to visit me at home. All this time me, nor my GP associated any of my feelings relating to the Propecia. I continued on the medication until November 2010 when my then partner fell pregnant. In summary, my partner lost the baby and had to under go an emergency termination as we established the pregnancy was ectopic (Growing Inside Her Fallopian Tube) which if reptured, could have killed her. Because of all what was going on in my life at this time I decided to discontinue Propecia and to concentrate on aiding the recovery of my partner and felt that my hair loss was the least of my worries.

My depression and poor mood left me and I began to feel better again.

In January 2013 my partner and I separated and I began to focus on my hair loss again as I felt my self esteem was very low and felt that if I had a normal hairline, I might be more attractive so this time I decided to order my Propecia online from Boots Online Hair Loss Treatment Plan and with very little effort my pills arrived to my home address in the post and after 2 weeks of taking the Propecia again all hell broke loose!

This time I began to spiral first into a minor despressive state, again I had to phone in sick at work (My only two ocassions in my 13 years career). Having only taken 14 pills, it was only at this point I began to wrack my brain for answers as to why I may be feeling this way again which was when it dawned on me… It was the Propecia. I then pulled out the side effects leaflet and to my amazement, alongside the sexual side effects I was already aware of, listed as possible side effects DEPRESSION, may also cause MALE BREAST CANCER!!! I began to panic. Over the course of the next two weeks off the medication things became even worse !!! I developed a rash on the tip of my penis, the glands on my penis head became wrinkled and in fact my penis itself began to shrink, next came complete IMPOTENCE. I could not achieve an erection if my life depended on it. I lost all my nocturnal erections, such as, no erections whilst sleeping or waking in a morning. Then the on set of anus muscle spasms developed, along with extreme fatigue and blurred vision and general dizziness. My penis also began to show a slight curvature to the left. Following this I went back to my GP and explained my symptoms and told them of my Propecia usage but they did not believe it could be related and told me they thought I had contracted chlamydia so gave me 1 oral pill to cure this. My symptoms still persisted so I returned to my GP who now told me they thought I had a bacterial infection of my prostate called Prostatitis and prescribed me Ciprofloxacin which they instructed me to take for 2 weeks twice daily. After taking Ciprofloxacin and seeing no improvements, then came the onset of Chronic Insomnia. I literally did not sleep for about 4 days. I managed about 2 hours per night at best.

At this point, as I lived alone, I decided to inform my family of my problems as I was beginning to really worry about my mental state. My Brother booked me an appointment with my GP and agreed to come with me to the appointment. This time, same surgery but different doctor, told me to take amitriptyline to aid my sleep, a mild anti-depressant, which I took for two nights as I was willing to take anything just to get some sleep. I was very reluctant to take ANY medication following my history with Propecia. The amitriptyline helped the first night but gave me a rapid heart rate and night sweats so discontinued and returned to my GP a week later, still suffering from IMPOTENCE, INSOMNIA, BLURRED VISION, CONFUSION, LACK OF MOTIVATION, EXHAUSTION, IMPAIRED COGNITIVE BEHAVIOUR. This time I was given yet another drug to help me sleep, Temazepam. This one did help and I managed about 6 hours sleep for the first time in about two weeks. However, I was not very keen on the idea of having to rely on medication to aid my sleep so only took it about 5 times over a two week period. I now take NOTHING to try to heal my body from the unintentional abuse it has been subjected to from PRESCRIBED MEDICATIONS. So now I go to bed at 11.30pm, get to sleep generally by 12am, wake like an alarm clock at 4am-4.30am and then spend the next 3 hours tossing and turning until 7am arrives when I get up in my confused mental state with no real concept of the real world or reality. With my vision still impaired, dizzy constantly, and general feeling of been unwell and fatigued with NO LIBIDO at all. I can look at a beautiful woman and feel NOTHING at all. This simply relates to the Propecia usage as it causes hormone imbalances within the brain that is so powerful it crosses over the blood brain barrier to destroy important Neuro-Transmitters which are signals that drives your body and how it functions, thus causing the lack of signal from your brain to your penis. Also Depletion of DHT kills us MEN and causes the shrinkage.!!!

I am now awaiting an appointment with a Urologist on 8th July 2013 to discuss my issues of IMPOTENCE, LOSS OF LIBIDO, PENILE SHRINKAGE, RASH ON TIP OF PENIS, ANUS SPASMS and a whole host of other complications!!! (UPDATE - URO SAID EVERYTHING WAS FINE!!! - ARSEHOLE)

I dont hold much hope, because PFS (POST FINASTERIDE SYNDROME) is very little understood since Propecia was only brought onto the market in 1997 by the makers ‘MERCK’ in the US and many specialists do not know or believe Propecia can have such devastating effects on peoples lives. I for one can categorically state it can and does and will continue to do so whilst it is readily available across the world but more importantly in the UK, been sold by reputable companies such as BOOTS in the UK. I am confident more and more lives of young men have and will continue to be destroyed by this poisonous drug unless something is done to remove it from the market.

As things stand I do not believe I will have the ability to be able to return to work in any capacity, thus destroying my career, which in turn impacts on my childrens futures.

PROPECIA IS LETHAL - DO NOT EVEN CONSIDER TAKING IT

Now 3 months on, I am totally impotent, no sex drive at all, feel exhausted constantly, my penis feels less full, I have red tip and wrinkled skin on my penis, Constant spasms in my anus and just generally feel very low, brain fogged !!! I also have pain in my penis shaft which is there constantly with my anus spasms.

Visited my GP again today and explained my situation was worsening 3 months post propecia, shrinkage and tingling in penis, empty scrotum and prostate pain amongst the worst as well as total impotence.

Oh yes and I got weighed today, I’ve lost 6.3 kg in 4 weeks since my last visit (Muscle Loss)

He has agreed to refer me to an Endocrinologist, does anybody have any advice on what I should request or do during this visit to the Endo please including any evidence of the existence of PFS?

Thank you