Out of the frying pan and into the fire

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)? UK

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?) Googling of my symptoms

What is your current age, height, weight? late 20’s, 5ft 10in, ~100kg

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.)? 1mg/day

What condition was being treated with the drug? Hair Loss

For how long did you take the drug (weeks/months/years)? 19 days

Date when you started the drug? Mid June 2023

Date when you quit the drug? Start of July 2023

Age when you quit? late 20’s

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

How long into your usage did you notice the onset of side effects? Day 18

What side effects did you experience that have yet to resolve since discontinuation?

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
[X] Loss of Libido / Sex Drive
[X] Erectile Dysfunction
[X] Complete Impotence
[X] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[X] 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
[X] Lack of Motivation / Feeling Passive / Complacency Had this pre-fin
[X] Extreme Anxiety / Panic Attacks Had this pre-fin
[X] Severe Depression / Melancholy Had this pre-fin
[X] Suicidal Thoughts Had this pre-fin

Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[X] Testicular Shrinkage / Loss of Fullness
[X] Genital numbness / sensitivity decrease
[ ] Weight Gain
[X] Gynecomastia (male breasts)
[X] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[X] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[X] 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?

~2 months of L-Arginine/L-Carnitine supplements
~2 weeks of 25mg sildenafil before bed every other night

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)?

No pre-fin blood tests to compare to but since coming off I’ve had the whole gamut of standard blood tests the NHS offers. Nothing out of range apart from my cholesterol.

Plasma test result was 13.4 nmol/L.

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.

3 months in and i’d hoped this nightmare would have been over by now, but here I am…

2022 was a very very difficult time for me and I was just starting to get my mojo back when earlier this year I noticed my hairline was starting to recede so thought I’m going to be proactive and stop it. I was diligent in researching the drug - multiple YouTube videos by doctors, tressless, NHS website. All assured me of low chance of getting the sides and will disappear soon after cessation. Like so many I thought I’d be in the majority and took the risk.

I took 1mg of Fin for 18 days before waking up one morning and seeing my penis had shrunk, was super cold and had a dull sting in my penis and testicles. This continued into day 19 and I stopped taking the drug. The coldness and stinging disappeared after cessation.

Day 10 after coming off the drug I felt the horniest I’d felt in years - erections would come from nothing. This lasted 1 afternoon and then disappeared, but I didn’t experience the crash that people describe, more just a return to baseline. Since then I’ve had a few brief windows here and there, usually preceded by a day of relaxation or seeing family/friends so I do accept there may be a stress/anxiety aspect to my condition

Medical experience

GP 1: Told me the human body is amazing but I need to give it time to sort itself out
GP 2: Told me to give it more time
GP 3: Finally got the standard NHS ED blood tests and Urology referral
GP 4: Junior Doctor who had to run for a second opinion was ‘confident’ things will clear up and prescribed me sildenafil
Private Urologist: examined prostate and all normal (very small). Assured me any shrinkage will be reversed over time when erections return. Advocated daily sildenafil/tadalafil usage
GP 5: Gave me a large prescription for sildenafil and ran blood tests for everything available from a GP.
NHS Urologist - Despite the usual boilerplate about the size loss being in my head he did concede that finasteride does cause serious ED problems and the literature is ambiguous when it says side effects will go away quickly. Also said that watery ejaculate is a transient side effect and any penile tissue loss would regenerate over time (funnily enough he also told me my penis is still above average size despite being shrunken and thinned)

Next step is to try and get an NHS referral to an andrologist/endocronolgist but it’s proving a bit more challenging

Most GP’s quickly dismiss everything as stress and anxiety (including beard loss and loss of body odour) which feels like such a lazy diagnosis with no appetite to think beyond the medical scripts they have. I do accept that stress and anxiety could be factors but last year when I was on the phone to the Samaritans multiples times a day just to not kill myself I was still able to get erections and had none of the symptoms I’m now experiencing.

Since coming off Fin and reading the forums it seems for years I had been taking/eating almost a tick list of things to lower DHT, so I wonder it that contributed. I’m a powerlifter and I’d heard/read about all of these being beneficial for lifting purposes and had no issues for the ~8 years of taking them.

  • Daily Omega 3
  • Vitamin D3
  • Zinc daily
  • Panax Ginseng
  • Maca Root
  • Beetroot Extract
  • Collagen
  • asparagus
  • blueberries
  • Coconut water
  • Daily almonds

Symptoms

Things that are less bad since day 1:

  • Penile Shrinkage - The size during the first few weeks would be comical if it weren’t so distressing and traumatising. It was almost as if I was looking at my penis in one of those carnival house of mirrors where it makes you look really small. Lots of spider veins and wrinkles appeared. Skin wrinkles have disappeared but the spider veins remain. Size is still diminished but less bad than day 1.

  • Interrupted sleep - for the first 2 months I’d often wake up throughout the night with my heart racing but then not feel any feeling of tiredness to fall back asleep (though I would always be able to). This side seems to have improved a certain degree

  • Erectile dysfunction - Complete impotence for the first 2 weeks but have had sporadic improvements since - can achieve a very weak erection when sexting women. sildenafil has given me intermittent abilities to get erections from watching porn. It’s impossible for me to self-stimulate an erection

  • Gyno - Definitely developed puffier tissue while on Fin - this seems to have returned to pre-fin baseline

  • Sebum production - seems to be improving - now producing sebum from my ears and face again.

  • Nocturnal erections - seem to get these more often than I did at the start, even had sexual dreams a few times

Core symptoms that remain:

  • Penile Shrinkage (flaccid and erect)
  • Complete loss of libido
  • Testicular Shrinkage
  • Hard Flaccid
  • Loss of sexual sensation in penis
  • Erectile Dysfunction
  • Weird dribbling/watery ejaculate
  • Thinning beard (getting worse)
  • Complete absence of body odour
  • Complete loss of appetite and thirst
  • Interrupted sleep - Can’t seem to sleep more than 3 hrs consecutively.
  • Sunken eyes (developed after month 3)
  • Sensitive stomach - have become far more intolerant of foods than before.
  • Weird super retraction of left testicle before a bowel movement
  • Can’t get a pump in my muscles - the most brutal workouts will still only get my muscles ~40% pumped
  • Weight loss (-8kg since July but it’s not uncommon for my weight to fluctuate that much in times of non-lifting)

Apologies for writing War and Peace but feels somewhat therapeutic to write it all out. I’ll drop an update in monthly going forward - here’s hoping I won’t need to do many more.

3 Likes

Sorry to read about your experience . War and peace is good. Hopefully time will help, it does for many new sufferers, stay away from stress and treat yourself with some tlc. please report your symptoms to the MHRA via the yellow card scheme. I can’t stress how important this is. It only takes 5 minutes.

1 Like

Hey man,

I have similar symptoms after saw palmetto: especially the shrinkage and hard flaccid stuff. Don’t mean to scare you but for me it’s proven to be a rather permanent feature of my life. Almost 4 years now.

You’re still early and might recover in a respectable timeframe. So don’t lose hope.

Do not try to self medicate this. Every supplement, herb and pharmaceutical known to man has been tried and it has led us nowhere. Many have been worse off too.

There is a way out of this mess and finally, after decades, the community is following that path: funding research and raising awareness.

The PFS Network is organising research into this disease, we need to know what’s wrong after all or we’ll suffer for decades more. The researchers involved are all top scientists who take a particular interest in PFS, but… we need to come together as a community and help fund this research. The next study is almost funded.

So consider donating and consider speaking up in a PFS network podcast video, or on Moral Medicine’s youtube channel.

2 Likes

Thanks. Already reported back in July. Never heard anything back though. Is there merit in submitting a new report for additional symptoms?

Yes mate report everything. Please do… thank you

Said i’d update monthly but it’s been better for my mental health to stay away from these forums as much as possible. I’m now 7 months off Fin and have seen a number of changes to symptoms and perhaps positively, none seem to be worsening (touch wood)

I still have bad days where I’m completely despondent but I think overall I’ve improved.

Resolved Symptoms

  • Weight loss - now back hovering around my pre-Fin bodyweight albeit with a slightly podgier composition. I’m packing on muscle and strength again which is positive
  • Interrupted sleep - This improved not long after my first post, but coincidentally I was diagnosed with sleep apnoea. I now have a CPAP and I’m sleeping the best I’ve done since I was a child. Truly a life changer

Good improvement

  • Complete loss of appetite and thirst - I feel thirst as normal and sometimes feel hunger as it was pre-Fin. Still bad days but seem to be improving.
  • Sensitive stomach - Seem to be able to tolerate most foods though weirdly I can’t have whey protein anymore
  • Can’t get a pump in my muscles - Hovering around 80% recovered

Minor improvement

  • Thinning beard - I think this has stabilised and maybe even starting to improve - more chest hair is growing
  • Penile Shrinkage
  • Complete loss of libido
  • Testicular Shrinkage
  • Hard Flaccid
  • Loss of sexual sensation in penis
  • Erectile Dysfunction - On daily tadalafil/L-Carnitine/L-Arginine at the moment
  • Weird dribbling/watery ejaculate
  • Weird super retraction of left testicle before a bowel movement - still retracting but not as severely as early on

No change

  • Complete absence of body odour
  • Sunken eyes - hoping this resolves in time now I’m sleeping well

Only real changes I’ve made in my life are getting back in the gym, eating well and getting on with life. I’ve had sex a number of times since this post and though I’m not back to pre-Fin size/sensation the woman was very happy…

Hopefully things continue to improve - I’m throwing everything at recovering (naturally) this year - potentially looking into Emsella and shockwave therapy for the ED.

2 Likes

Realise this isn’t even 2 weeks since my last post but i’ve had the most amazing breakthrough in the last few days.

Following a week of brutal weightlifting, on Wednesday night I suddenly felt a twinge of libido and was able to mentally arouse myself to an erection twice for the first time since coming off Fin. I’ve had erections many times since coming off Fin but they never felt as my own - this was the first time it felt like it was mine

This was followed by having a wet dream for the first time in my life. I’ve not been able to mentally arouse myself since - but my penis is hanging a bit ‘meatier’ than it has been, glans sensitivity has increased and today I had the faintest whiff of body odour (never been so happy to smell). It feels like things are finally properly coming back online.

I have no real idea of what has caused this and correction ≠ causation but this improvement seems to have started in line with me getting back into the gym and finally getting my sleep apnoea sorted.

Current supplements -

1000mg L-Carnitine (twice daily)
1000mg L-Arginine (twice daily)
5mg tadalafil

Praying this isn’t temporary and things carry on returning to normal

2 Likes

Thank you for sharing your progress
Can I ask about your hunger pangs? I have no appetite but my stomach rumbles without the hunger acknowledgement in the brain, do you know get the brain signalling you are hungry too?