I'll tell you my story

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)? Italy

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 search

What is your current age, height, weight?34 years old , 174 80 kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? finasteride

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

What condition was being treated with the drug? androgenetic alopecia

For how long did you take the drug (weeks/months/years)? 6-7 years

Date when you started the drug? 2011

Date when you quit the drug?2018

Age when you quit? 28

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

How long into your usage did you notice the onset of side effects? from the last year of taking the drug to now

What side effects did you experience that have yet to resolve since discontinuation?sleep disturbances and some sexual symptoms

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[ :heavy_check_mark: ] Loss of Libido / Sex Drive
[ :heavy_check_mark: ] Erectile Dysfunction
[ ] Complete Impotence
[ :heavy_check_mark:] Loss of Morning Erections
[:heavy_check_mark: ] Loss of Spontaneous Erections
[ :heavy_check_mark:] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[:heavy_check_mark: ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[:heavy_check_mark: ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[ ] 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
[ :heavy_check_mark:] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
I started training in the gym and took care of my nutrition

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?
my post-finasteride blood tests are normal apart from high LDL just over the max range and vit b12 very high

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

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

Self-reporting template - ONLY USE FOR FUTURE POSTS TO REPORT ANY TRIALS OF TREATMENTS, NOT YOUR INITIAL MEMBER STORY

  1. Name of the therapy/substance:
    • Dosage:
    • How often you took it:
  2. Status
    • Still using [ ]
    • Stopped with no lasting change to initial symptoms [ ]
    • Stopped with persistent change to symptoms [ ]
  3. Duration of use: Days [ ] Months [ ] Years [ ]
  4. Response when you started:
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  5. Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  6. Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]

Hello everyone,
my name is Eric (invented name because I care a lot about my privacy) I am an Italian boy. I lived in Italy until I was 31 years old and I have been living in another country for 3 and a half years. I will try to tell you my story briefly so that I can share my problems of a sexual nature with you and maybe get some advice from someone more experienced than me because honestly I am totally ignorant on the subject. I state that my English is not fluent so I apologize in advance if my grammar is not perfect.
I started taking finasteride at the age of 21 followed by a dermatologist and every 7-8 months I stopped the drug for 1 month or 1 month and a half, I don’t remember exactly. That I remember I never had any side effects other than the slightly fluid seminal fluid that disappeared when I stopped the drug for that month, my dermatologist said it was important for the recovery of the hormonal axis of my body. While taking finasteride I had a normal life as a normal boy and did normal things like all boys my age including very satisfying sexual intercourse Well the last year of taking the drug I remember starting to notice small effects collateral to the sexual sphere, I have never associated them with the drug because at that time I was facing a very sad period of my life … linked to very important economic problems that led me to depression and physical and mental weakening and it is It was at that moment that I started noticing those annoying sexual side effects then in addition to sleep disturbances and chronic fatigue. I remember that at that time I had a thousand thoughts in my head and I didn’t think about the drug at all, also because for lack of money I didn’t even take it anymore. I began to think seriously about the syndrome when having solved my financial problems and my life was back to normal, I could no longer go back to the way it was before. List my sexual disorders

  • Erectile dysfunction
  • sleep disturbances
  • decreased ejaculation
    loss of spontaneous erections
  • reduced ejaculatory jet (I think it is the consequence of a weak erection)
  • mental fatigue, a consequence of a sleep that is not entirely restorative
    So I decided to go to an andrologist who, after having viewed my blood tests, decided to have me undergo a testogel therapy for a month.I improved a lot and took advantage of that moment to start training in the gym and take care of my nutrition. The result is that after a few years my strength has increased a lot, I remember that I weighed around 60 kg and now I am around 80-81 kg with a percentage of fat of 15%. without using steroids , my erections have certainly improved but let’s say we are on 80%. I can masturbate every day even 2 or 3 times in the same day but without having spontaneous and nocturnal erections, I can excite myself with the thought if I think about things erotically that I like and I can also have an erection but it is never 100 strong % and if I stop thinking or touching myself I lose my erection My sleep quality has improved a little … I can sleep 5 or maximum 6 hours but I wake up with the need to urinate even if my urine is not like that enough to go to the bathroom urgently, I never wake up 100% rested. Currently I feel like my physical and sexual strength is in the middle … like something has been cut off. I tried to take generic cialis 20mg and everything works fine also my libido increases, i tried tribulus + cialis 5mg there were improvements but nothing special so i stopped taking them, it was just a waste of money. I have never associated my dark circles with the syndrome because I honestly think it is a consequence of my sleep disorder. mentally i’m fine i don’t think i have any kind of ailment, as mentioned before i live alone in another country and i can do everything by myself without anybody’s help i’m learning english without ever having studied it so i think mine brain functions work well only at the end of the day sometimes I feel really tired mentally and this is mainly due to my lack of restorative sleep. I read about hopeless94 that talked about some things about libido and I found myself there such as the visual one, before this syndrome only the sight of a curvy woman excited me now it happens to me but it is really a low stimulus also I must say that every day I feel the need to masturbate even though I do not have a fast erection … I think I have lost some sensitivity.

that’s it guys, my story is very similar to yours … in the meantime I have decided to visit a another andrologist specialist with the hope that the latter can give me concrete help. I wish everyone lots of sex and happiness and hope you can heal.

I am not satisfied with the improvements I want to heal, I am sure we can all do it having been a former martial artist I have been educated in self-confidence and have faith in oneself, this mentality has led me to overcome many difficult and sad moments in my life and that is why I am determined. My goal is complete recovery also because I would like to have a stable relationship and have a family.

2 Likes

Hello Eric,

Welcome to the forum. I’m very sorry this has happened to you, but it sounds like you have a great attitude about everything. I’d encourage you to check out our new user guide to start, and please reach out if you’d like to talk.

Take care.

Hi Sugarhouse,
thank you for your message but you know sometimes having a good attitude to life’s problems is not enough. In this case some outside help is needed, any kind of advice is welcome. Also regarding a medical evaluation, I would like to know if in my case it would be better to consult a psychiatrist or andrologist. I have already been to a urologist and endocrinologist, the first one prescribed me melatonin, tribulus and cialis and as I mentioned earlier the improvements are slight but honestly the quality of sleep is unchanged while the second just told me that the hormone tests are good and that there was only the vit b12 high and ldl almost above the maximum range. In my ignorance on the subject I have decided to consult an andrologist I hope to be able to get out of this tunnel which sometimes makes me feel as if something has been stolen from me. I really want to do many activities but often, due to lack of sleep, I feel tired and listless.

Please have a read of the new user guide when you get the time. Unfortunately, if you’re looking for a quick fix, you’ll find the overwhelming majority of PFS patients do not respond to treatment. This is a very complex disease as illustrated by Baylor’s findings: https://www.pfsnetwork.org/science/differential-gene-expression-in-post-finasteride-syndrome-patients

With that said, many patients experience improvements over time, to varying degrees.

While you may be interested in pursuing treatment, I would also ask that you have a look at the research our group has recently organised which will be led by world-leading scientists. It is an urgent priority to understand the mechanisms involved in PFS so we can hopefully identify effective treatments. Every donation helps so we encourage patients to give what they are able.

Take care.