My Story -- 5 Years of Finasteride Use

Member Stories
#1

Where are you from (country)?

Australia

How did you find this forum?

Medical Study – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7231981/

What is your current age, height, weight?

29 – 204cm – 90kg

What specific drug did you use?

Finasteride

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

Initially 1mg every other day (~3 years) followed by 1mg/day (~7 months)

What condition was being treated with the drug?

Hairloss

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

A total of about 4.5 years

How old were you, and WHEN (date) did you start the drug?

2015 – 23 years old

How old were you when you quit, and WHEN (date) did you quit?

October 2019 – 27 years old

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

Started tapering off around April 2019 and completely stopped in October

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

~4 years

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

Loss of 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
[x] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[x] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[x] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[x] Reduced Ejaculate (hard to say whether this is the case)
[ ] 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

[x] Other – My hair loss has completely stopped after ceasing use of the drug for close to 2 years now

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

No invasive treatments. However, I’m currently taking Creatine Monohydrate (~3g / day) to attempt to raise DHT (increased strength in the gym is an added bonus).

Most effective “treatment” I’ve found so far is daily meditation. It hasn’t really brought back my sex drive at all but has helped with me come to terms with my complete loss of libido and find happiness/content-ness with life again.

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)?

I’ve had hormone levels checked multiple times since ceasing Finasteride usage. All the results are consistently normal other than my free testosterone levels being consistently below the normal range.

t-levels
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My Story/Timeline

2015

  • Started taking Finasteride on and off
  • Was prescribed the standard dose for hair loss (1mg/day) however I cycled my usage of the drug (roughly week on followed by a week off)
  • I have a very high sex drive at this point in my life

2018-08

  • Experienced no adverse side effects to this point.
  • Start taking Finasteride consistently at 1mg/day (no more cycling) as I notice hair loss on the weeks I don’t take it.

2019-04

  • Experience sudden loss of libido (felt like overnight change)
    • No interest in watching porn
    • No interest in having sex with random women
  • Experienced no other symptoms other than complete loss of sex drive
  • Continue using Finasteride

2019-10

  • No improvement in symptoms so I stop taking Finasteride (cold turkey)
  • Hair loss does not resume

Current

  • Total testosterone levels are within normal range, however free testosterone is low
  • Very low sex drive
    • Little interest in the opposite gender and having sex
    • Use Viagra (50mg Sildenafil Sandoz) which helps maintain an erection when not turned on
    • I’m now Demisexual – I can be turned on by a deep emotional connection to a women but never experience physical/animal attraction
  • Hair loss has completely ceased

Summary

Hi all! I discovered this community yesterday so wanted to share my story. After reading and watching some of the videos that have been shared I actually feel somewhat lucky to have only really experienced a loss of my sex drive.

That said, losing my sex drive has still been quite hard for me. At times it feels like I lost a big part of my identity and has caused me a large amount of anxiety and sadness over the past couple of years.

It has made it extremely difficult starting a romantic relationship as, from my experience, sex is especially important for bonding at the start for most people. Loosing my sex drive has also made it a lot harder for me to connect with friends.

I’ll make sure to update this post as I attempt to reverse my reduced libido. Has anyone had any experience increasing their free testosterone? The only results in my blood work that have come back abnormal is having low free T (my total T is within the normal range)

#2

Hello @roughead

Sorry that you had to end up here with the rest of us.

For starters I would be careful with the Fenugreek, it’s a 5ARI just like finasteride (although way weaker) and people here tend to get worse when using 5ARIs in the long run at least.

When it comes to the stopped hair loss, I can say I experienced the same thing. I used Fin for ~10 months and after I quit I didn’t lose any hair for almost 2 years. I started to lose again recently after I used 5g/d of Creatine. It did help with my erections, but not with any of my mental sides.

Also the low free T is a common theme of PFS sufferers. But in many cases raising it doesn’t really help much at all. There’s probably a reason why most of the T is bound up to begin with.

I can also say that I’m the opposite, my free T is quite high (SHBG = 22 nmol/L). So it’s not like low free T = instant PFS.

If you want to try to raise it you could use something like 6mg of Boron per day. But do your own research before trying anything.

#3

Thanks for the advice @Cbrandel! I tend to eat a lot of Boron rich foods but might try out supplementing it anyway.

#4

Hi @roughead

Welcome to the forum, from a fellow Aussie.

Although losing your libido is obviously terrible for a man in his prime years, I’m very grateful it seems you got off pretty lightly. So you’ve been off the drug for about a year now?

I remember I experienced most of my improvements between 12-36 months, so hopefully you continue to trend upwards over the next year.

Thank you also for completing the survey, it’s much appreciated.

Take care and please keep us updated.

#5

Thanks @Sugarhouse! Actually been off it for 2 years now (stopped Oct 2019).

The loss of my libido is an interesting one. At times it has had a pretty negative affect on me mentally, but I wouldn’t say my mental side affects were a direct consequence of Finasteride usage (e.g. Finasteride caused my loss of libido which in turn caused me to be sometimes depressed… but Finasteride didn’t directly cause me to be depressed).

Did you have any Australian doctors or counsellors experienced with PFS that you could recommend? Would love to get in touch with one!

Also was there anything you did over the 12 - 36 month period where your symptoms improved that you think I could benefit from copying?

#6

Checking in to post another update here. Just had another set of blood work come back which was taken literally 3 days after my first set (which I posted above)

Lab Results
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Weird thing is that my Total T was way down compared to the first test (dropped from 27.6 nmol/L to 12.2 nmol/L). Is it normal for Total T to bounce around so much? Unfortunately my first set of blood work didn’t have my free T so I can’t make a comparison there.

#7

Hey @roughead

Regarding doctors and counsellors, not really unfortunately. Most doctors don’t have any familiarity with the condition and the ones who do have very sporadic success in providing symptomatic relief. Sorry if that sounds bleak - just want to make sure I’m frank about the clinical environment for PFS patients.

There was a bunch of stuff I tried during 12-36 months as I really threw the kitchen sink at this thing. The number one thing that helped was time. Sorry again it’s a bit of a bleak answer! You’ll find that’s pretty common across most patients though, that time is the biggest factor in improvement.

What did your docs say about your bloodwork, as your free test seems to be lower than normal range?

#8

No need to apologise, I appreciate the honesty! GP didn’t have anything to say about the low free T although @Cbrandel recommended giving Boron a try which I might give a go.

I’ve got an appointment booked in at the Australian Prostate Centre for Nov 4th so hopefully they have some suggestions around how I can try to improve my libido.

2 Likes
#9

Wanted to post a quick update on my journey so far (think I’m going to sorta use this thread as my journal).

Romantic Life

  • My low libido has been causing to be more depressed lately as it’s been stopping me from being able to start a new romantic relationship
  • However I recently realized there’s a term for the kind of sexual attraction I now experience post PFS called “demisexual” – someone who is demisexual only experiences sexual attraction to someone they have an emotional connection with. This resonates with me a lot and think it will be useful in guiding my future dating life.

Supplements

Mental Health

  • I’ve got a consultation with Alison Leigh (a sex therapist) coming up this Monday. It’s my first time engaging in sex therapy and Alison looks very experience so I’m excited to see what comes out of it!
3 Likes
#10

Desire lead me to action, however now use action to lead to desire

Another update from me after a couple more weeks of research and such…

Australian Prostate Centre

I spoke with Eve Mertens, a nurse practitioner at the Australian Prostate Centre and found the chat to be quite constructive. She said a couple things that really resonated with and/or interested me:

  • “In the past my desire lead me to action, however I can reframe my thinking where action leads to desire.” I found this advice to me very useful for my current situation as I never experience physical attraction but if I do start having sex/masturbating I can still enjoy the experience (the feeling of orgasm)
  • She’d worked with patients in the past who had taken Finasteride (to treat their enlarged prostate) who also reported loss of libido, however I was the first she was aware of that had suffered permanent side effects from the drug
  • She recommended the book Urban Tantra for further exploring the mental side of masturbation/sex/pleasure. I’m excited to give it a read!

Alison Leigh

Spoke with Alison Leigh regarding my loss of sex drive. Alison was supportive but had never heard of PFS and couldn’t offer me additional advice that I already hadn’t considered. In hindsight I wouldn’t have had this session and saved the $400 USD.

Dr. Goldstein

Spoke with Dr. Goldstein from San Diego Sexual Medicine and he shared various interesting things:

  • Finasteride effects 10 major metabolic pathways
  • PFS suffers often have reduced dopamine levels and increased serotonin levels. He mentioned various drugs that could help correct this:
    • Bremelanotide – for increasing dopamine
    • Flibanserin – to decrease serotonin
  • He also mentioned it’s worth getting my DHT levels checked

I’m not in any rush to start taking somewhat poorly understood new drugs to correct the damage Finasteride has done but I certainly will be researching the above to see how they could help me.

Andrew Huberman

Listened to a podcast by Dr. Andrew Huberman on the effects of Dopamine on the mind and body.

He also mentioned various dopamine increasing substances that are available over the counter that I plan on looking into including:

Other Updates

  • PFS symptoms feel roughly the same. I’ve noticed I haven’t had morning/night wood for a month or so though.
  • Currently still taking Creatine and Fish Oil supplements

Overall I’m very excited by the news that PFS Network is now a registered charity and the new YouTube videos that have been coming out! Thanks for everyone in the community who contributed their time and money to get this going!

3 Likes
#11

Please, write an update with your experience with dopamine increasing substances. I tried 5-HTP plus L-Tyrosine combo this summer. My main goal was getting rid of anxiety, improving sleep quality and motivation. But at the same time I experienced full sexual recovery as a result. Unfortunately the effect deteriorated in two weeks or so. Now I’m trying to repeat it.

1 Like
#12

Oh interesting! To have just two weeks of full sexual recovery sounds like a dream to me. Was the effect immediate or did it take time to kick in? What dosage were you taking of each?

For what it’s worth:

  • 5-HTP increases serotonin which according to Dr. Goldstein would not be a good thing for PFS sufferers as we have increased serotonin levels
  • The fact you only experienced improvement for 2 weeks aligns with what Huberman outlines in his podcast. Spiking/raising dopamine levels is only temporary and will actually result in your dopamine baseline levels dropping in the long term
  • I bought the L-Tyrosine from Bulk Nutrients
2 Likes
#13

Well, I still think it could actually be unrelated but I didn’t take anything except that(well,and some fish oil and multivitamins) in that period. Important note: I suffer from PAS, not PFS. And I didn’t know about possible 5-HTP harm at that moment. I tried it with caution though, and chose time-release one. Unfortunately, I don’t remember the exact dose and brand of Tyrosine I used(Most likely, it was Now Foods, 500 mg). Now I’m trying Thorne, 500 mg.

It looks like the effect appeared at least 2-3 weeks later and it was sudden. One day I just got up and was feeling normal again. Although I remember feeling like my sexual function wasn’t 100% back(more like 80-85%), but that was more than enough for me at that moment. I believe I felt like that because of a bit lower than it used to be libido, and some genital numbness. But I do remember having 100% erections back, feeling desire and arousal again, experiencing sexual pleasure again – everything like normal in that sense.
I even wondered if the testosterone level changed but wanted to be more confident the recovery is stable. At that moment it was approx. half a year after I stopped taking acnectunane and I still had illusions that it all might just go away.

1 Like
#14

Ah gotcha. Huberman recommends avoiding use of L-Tyrosine more than a couple times a week to avoid tanking your baseline dopamine levels so I’m going to start off with that (and might ramp up).

I’ll let you know how it goes!

1 Like
#15

Quick update from me:

  • I haven’t done much experimenting with Dopamine increasing substances
  • I saw Dr. Dennis Handrino, a psychiatrist in Melbourne Australia, to try to get a script for Bupropion. He wouldn’t prescribe me the drug because the only allowed medical use of Bupropion in Australia is for quitting smoking :confused:
  • I recently started seeing a girl who also has a low libido and has been quite supportive. I really like her but it can feel like a bit of a catch 22 in that if I “fixed” my sex drive the relationship probably wouldn’t work

For now I’m going to hit pause on self-medicating to try and address my PFS symptoms and see how things go with my new girlfriend. Still sucks to have lost a bit part of the joy in sex but I feel happy enough for now where it’s not worth further messing with my body chemistry.

#16

And one other update I’m happy to provide is that I’ve started to speak about PFS more broadly with my friends and family (previously only my parents knew I was suffering from PFS).

Overall the response from my friends/fam has been great and it feels good not having to pretend to have the same interest in sex that I previously had.

1 Like
#17

Hi Roughead, thanks for sharing your story. My story is pretty similar in terms of fin usages, sides and as well that my hair loss has pretty much stopped altough I am off fin for almost a year now! Does anyone has a thought on this. Could it be that DHT level is just so low that hair is no longer affected by it?

I personally didn’t turn demisexual, I just suffer from ED but therefore my sex drive is pretty low, as it is no longer properly working.

1 Like
#18

Oh that’s interesting Jazky. Would you say you have the same sex drive you had pre-fin usage?

For what it’s worth I had my DHT levels checked kinda recently and the results were within the normal range for me.

Collection Date: 17/11/21
DHTest. (LCMS): 1.21 nmol/L (0.4-2.5)
1 Like
#19

Long overdue update from me… Late last year I ended up seeing Dr. Goldstein at San Diego Sexual Medicine.

I was prescribed Vyleesi (Bremelanotide) to address my libido issue and 5mg Cialis / day to help with “confidence” issues:

  • Vyleesi – Costs $100 USD for 4 injections. Injections are very easy to self-administer. I’ve tried two injections so far and, unfortunately, experienced no uplift in my libido (and experienced no other side-effects either)
  • Cialis – Costs $12 for 90 5mg tablets. Taking one tablet a day felt like overkill – I was often erect at inappropriate times so I now take one every 2 days. Whilst this hasn’t directly impacted my libido I’ve found it somewhat useful for getting myself in the mood (with action leading to desire)

Overall my experience with SDSM was good, however for patients suffering similar symptoms I’d suggest saving the $2k and, instead, directly getting a script for Vyleesi and Cialis from your local GP. Whilst Vyleesi doesn’t seem to have any affect for me it has been reported to be very useful for other patients.

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#21

It’s very good that doctors, clinics and even medical university departments like Prof. Zitzmann in Münster recognize post finasteride syndrome as a serious disease. This helps to rise awarness and acceptance of this disease.
Pfs and finasteride is now discussed at urologist congresses, not being so rare, not being so profitable for the pharma industry and the old and new marketing systems, it would be off the market for years already.
But the therapeutical options the pfs doctors can offer are limited.