22 Year Old Struggling with this all- 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)? USA

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 pfs

What is your current age, height, weight? 22, 5’ 9", 153 lbs

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Finasteride and Saw Palmetto before that

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? Took it 3 times. Started at a 1mg/day dose, then waited for sides to go away, then tried a .5mg every other day, waited for sides to go away, then tried a 0.25 mg dose every Monday, Wednesday, Friday and got PFS

What condition was being treated with the drug? Alopecia

For how long did you take the drug (weeks/months/years)? A total of around 3 weeks

How old were you, and WHEN (date) did you start the drug? 22, roughly early July

How old were you when you quit, and WHEN (date) did you quit? 22, late July

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

How long into your usage did you notice the onset of side effects? Within several doses, which is why I kept stopping then decreasing the dose

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
Complete Impotence
[ X] Loss of Morning Erections
[ X] Loss of Spontaneous Erections
[ X] Loss of Nocturnal Erections
Watery Ejaculate
Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
[ X] Emotional Blunting / Emotionally Flat
[ X] Difficulty Focusing / Concentrating
Confusion
Memory Loss / Forgetfulness
Stumbling over Words / Losing Train of Thought
Slurring of Speech
[X ] Lack of Motivation / Feeling Passive / Complacency
[ X] Extreme Anxiety / Panic Attacks
Severe Depression / Melancholy
[ X] Suicidal Thoughts

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

Misc
Prostate pain
[ X] Persistent Fatigue / Exhaustion
[ X] Stomach Pains / Digestion Problems
[ X] Constipation / “Poo Pellets”
[X ] Vision - Acuity Decrease / Blurriness
[X ] Tinnitus (ringing or high pitched sound in ears)
Hearing loss
[ X] 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? Just supplements and I tried tribulus which I think messed me up way more

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)? Prolactin was elevated (normal 5-15ng, mine was 18.7)

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.

So as I mentioned I took the drug multiple times despite side effects. At the time the only side effects I felt were a loss of morning wood- nothing else with my first two doses. The reason I took the drug so many times is that the whole PFS thing seems so fake, and so many people over at r/tressless on Reddit and the internet in general make it sound fake (huge shoutout to Kevin Mann). Also, in my experience my sides went away both times I took it. The third time I messed with it, I experienced shrinkage, at which point I stopped- but the sides never went away and got much much worse than just a loss of morning wood.

I’ve now been dealing with this for over 8 months. I tried different things and am scared of messing with my body any more. I’d love to hear about anything that helped you guys, but I’m also really curious about the state of research- does anyone think we’re making any actual progress? I’ve been lurking here for a long time and I know the Baylor study was supposed to be huge but seems to have essentially flopped and fallen way below expectations. I find it terrifying reading about stories of people dealing with this for decades and it not getting better. I know a ton of us are super young so many of us feel this, but man I feel like I haven’t even gotten to enjoy life yet, I’m so young to be dealing with all this. I try to keep positive but it feels like a lot of my sides are not getting any better. The shrinkage in particular is terrifying.

I haven’t had a normal bowel movement since this started. Went and got allergy tested before I found this forum and was told I now have food allergies to things I’ve had my whole life, including beans, nuts, and cow’s milk- I am completely baffled by this

Hey man, not had a chance to read your post yet (currently at work) but I will soon! Hope your good bud

1 Like

Hi @JustTrynaMakeIt

I’m sorry to hear about your story. Unfortunately, there is a litany of information on YouTube and other social media about finasteride which is alarmingly incomplete. I would continue to give it time - I remember experiencing an uplift 9 months post-crash, and again about 18 months in. Unfortunately the majority of my problems remain, but not as painfully.

The moderator team are continuing to work hard on securing new research opportunities, and I’d encourage you to read our latest post here.

I also noticed you haven’t ticked any boxes on the symptoms above, so when you get a chance could you please do that?

Lastly, it would be deeply appreciated if you and @Underprepared could fill out the patient survey via the link at the top of the forum. I can’t stress how important this dataset we’re collecting is for research and awareness.

Take care,
Mitch

I just filled out the boxes- totally had forgotten to do that bit. I’ll be filling out the survey as well. Hope it actually helps move us forward :confused: Kinda losin faith here

Thank you. Please don’t lose hope, there are a lot of good things happening, they’re just not always obvious. Please reach out if you ever want to just talk.

2 Likes

I’m tryin man, thanks. I’m in a high level graduate program and the combined stress of these issues plus that is a ton some days. I also haven’t really told anyone so I’m kinda wading through this alone

I totally understand. For the majority of my PFS “life” - 7.5 years - I tried to pretend I was normal, only told family and tried to keep high-paying jobs. At the beginning of last year I realised that nothing else matters than getting my health back, and unfortunately until we understand the science, that is not possible for many patients.

I contributed a patient video story for our work on Rare Disease Day and have leapt head-first into project work with the admin team which has really given me purpose. I’ve also told my friends, my work and many others about my condition which was a cathartic, and surprising, experience. It blew my mind how many people offline will not question you, your motives, or whether your condition is caused by finasteride. They just see how much it’s broken you, and overwhelmingly, offer their support. It’s easy to dismiss our condition when we are just usernames on a patient forum.

I can’t say that experience would be uniform for every patient, but I think it would be worth trying to talk to your family and close friends about what’s going on. And if you would ever like to help with any awareness or advocacy projects, please reach out.

I definitely will, thanks Sugarhouse. Do you really think we’ll be making real progress with the research this year? From everything I’ve read, the Baylor study was a big disappointment and research in general takes ages- literally years to get anything of worth done.