New to PFS and facing the acceptance of the condition

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)? United Kingdom

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

What is your current age, height, weight? 32, 6ft, 160lbs

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Finasteride. Used saw palmetto beforehand but no side affects
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1mg usually every other day

What condition was being treated with the drug? Hair maintenance, regrow this

For how long did you take the drug (weeks/months/years)? Around 4 years , 3 months

How old were you, and WHEN (date) did you start the drug?
Started at 28, April 2015
How old were you when you quit, and WHEN (date) did you quit?
Last pill taken on September 11 2019
How did you quit (cold turkey or taper off)? Tapered off

How long into your usage did you notice the onset of side effects? Around 3 - 3 1/2 years

What side effects did you experience that have yet to resolve since discontinuation? Severe insomnia, lack of pleasure, yoyo libido , a feeling of emptiness and …’nothing’. Soft erections, uninlateral gynecomastia, tinnitus

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
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 or Difficulty to Ejaculate / Orgasm
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
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? It has got so bad that I’m quitting job and planning a period of ‘recharge’ where I am
To combat this.
Till then I take 3mg of lunesta every night for sleep (get about 5 hours on average), also using some L arginine, occasional inositol.
I also exercise and have noticed a bit improvement when I do cardio.

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 psychiatrist had my back and believed that something physical was wrong when the GP doctor just thinks it’s all in your head. My psychiatrist ordered blood work and I came back with high calcium levels, testosterone was ok at 468, prolactin was in the normal range.
Anything not listed in the above questions you’d like to share about your experience?
The real horrifying thing has been the insomnia plus the lack of creativity and feelings of nothing . I am a songwriter at heart and thrives on using my emotions and feelings as fuel for creativity now I have nothing. It’s the worst thing you can think of really. Physical things the sleep problems are the worst, followed by the Uni lateral gynecomastia , then the erections / sex drive etc
The gynecomastia fucking hurts…I tie that in to how bad the syndrome is . When the nipple starts hurting is when I feel I’m back at square one as a 32 year old fit and healthy (otherwise) man shouldn’t be growing a fucking left breast. When the pain starts coming is when I notice the sex drive and libido drops too. Sleep has improved a little the last 2 weeks

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

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Hi @Forwardsnotbackwards and welcome to our community. I’m so sorry to read your story, the side effects you speak of are all too familiar to so many of use here. Thank you for making your member story.

The next thing to do is to read this thread

The most helpful thing you can do in the immediate term is to fill out our Patient Survey.

The data generated will help to characterize the condition(s) that have come to be known as PFS, PAS and PSSD, along with several other persistent syndromes resulting from various substances

The survey can be accessed through the bar-graph icon at the top of your screen after you have posted a member story, and remember, the survey can be halted at any time and continued at a later time/date.

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Thanks for the info and the introductory support . I appreciate you getting in touch . Yes times have been tough and I’m approaching the 3 month mark since discontinuation. I still have hope things will get better , I know there is a long road ahead…Life is hard enough for healthy individuals out there - yet us people with PFS feel like life has almost put us back at square minus one,

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