New member - PFS nightmare 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)? US

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 under PFS

What is your current age, height, weight? 70, 5’ 6.5", 200 lbs

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

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 0.5 mg/day

What condition was being treated with the drug? BPH

For how long did you take the drug (weeks/months/years)? several years

How old were you, and WHEN (date) did you start the drug? Don’t remember

How old were you when you quit, and WHEN (date) did you quit? 69.5, around Sept 20, 2020.

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

How long into your usage did you notice the onset of side effects? Don’t remember

What side effects did you experience that have yet to resolve since discontinuation? Ejaculatory dysfunction; & dramatically reduced libido

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? Sexual intercourse with my partner has become increasingly unsuccessful over the past year; however I try to masturbate about once every day.

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)?

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

I am still able to masturbate, although it is significantly more difficult now. Curiously, I have not experienced ED. My dysfunction is ejaculatory, not erectile. Arousal to erection still occurs, although far less frequently. Ejaculation during intercourse is now extremely rare. I fear the condition is permanent.

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

I’m very angry at my doctor for prescribing Dutasteride in the first place. My symptoms of BPH were easily manageable without the drug, and they never improved while on the drug. I’m also very angry at myself for not having researched potential side effects before taking the drug. Learning about PFS has been a gargantuan nightmare.

Hi @nsalmon

Welcome, and I’m sorry to hear you are not doing well. Please give it some time to see how things improve, as many patients report some natural improvement over time and I notice you’re still in the first year off the drug. While this problems will most likely persist, you should notice some improvement soon.

There are a few older members who took the drug for BPH I believe - @Exsexgod being one, so you’re not alone and this forum is here to help and support.

If you’d ever like to connect for a phone call please let me know.

Dear @nsalmon and @Sugarhouse
There are @Akiyah and @JimWildman and two in a FB Group who got prescription of Finasterid against benign prostatic hyperplasia. I have got fully blown PFS at the age of 59. @Akiyah with 59 and @JimWildman fully blown PFS with 63 yo.

So I think every year enjoyed without PFS is one gift. So with 70 you could enjoy 11 years without PFS than me, Akita and Jim.
But than I think about all the young guys here many of them getting impotent and developing muscle atrophy, many with brainfog and afraid of future in such young years, that we can pray to god for all the years we spent without this horrible disease.
That it is still prescribed, without warnings is a scandal. My urologist gave to package s with me just to try, after I told him that I’m in a sexuall aktiv relationship.

You’re right. I’m grateful for the years I had, & I’m not giving up hope for a brighter future.

Thank you for your supportive message & especially for your encouraging words. Not to worry, I won’t consider anything as drastic as suicide over this crap (& I’m an old guy anyway). My libido–which was legion & legendary as recently as a year and a half ago–seems to be on a permanent hiatus. Yet I still immensely enjoy the sight of a short summer dress flying up in the wind, so I’m not giving up hope. Nor should anyone else in this group. As long as you miss being able to perform, there’s hope. Life is still rich.

2 Likes

Said it very well. As mentioned the offer is always there if you want to connect outside the forum.

Take care.