Let's beat this bitch - no hope's story

Hi all

Figured it’s about time I should probably post one of these threads already.

  1. 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?)
    Googled “numb penis finasteride”

  2. What is your current age, height, weight?
    27, 5’9, 70kg

  3. Do you excercise regularly? If so, what type of excercise?
    Started doing pushups post crash.

  4. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    Meat maybe once a week. Lots of bread, dairy and vegetables.

  5. Why did you take Finasteride (hair loss, BPH, other)?
    Hair loss.

  6. For how long did you take Finasteride (weeks/months/years)?
    Few months shy of two years.

  7. How old were you, and WHEN (date) did you start Finasteride?

  1. Late October 2011.
  1. How old were you when you quit, and WHEN (date) did you quit?
    July 2013. 27.

  2. How did you quit (cold turkey or taper off)?
    Began tapering. Crashed a week later.

  3. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    Generic proscar.

  4. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
    1.25mg

  5. How long into your use of Finasteride did you notice the onset of side effects?
    Within a few days

  6. What side effects did you experience while on the drug that have yet to resolve since discontinuation?

Sexual
[x] Loss of Libido / Sex Drive
[x] Erectile Dysfunction
[ ] Complete Impotence
[/] Loss of Morning Erections – occur once every two days or so
[x] Loss of Spontaneous Erections
[x] Loss of Nocturnal Erections
[x] Watery Ejaculate
[x] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[/] Reduced Sperm Count / Motility – not sure, it’s possible

Mental
[ ] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[ ] Confusion
[x] Memory Loss / Forgetfulness
[x] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks - had during crash, believe it was related to my situation rather than hormonal
[ ] Severe Depression / Melancholy - see above
[ ] 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
[x] Genital numbness / sensitivity decrease
[ ] Weight Gain
[x] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[/] Prostate pain – sporadic and quite minor
[ ] Persistent Fatigue / Exhaustion
[x] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[/] Vision - Acuity Decrease / Blurriness - sporadic blurriness in left eye, returns to normal after blinking
[x] Increased hair loss
[ ] Frequent urination - resolved, i think
[x] Lowered body temperature

[x] Other (please explain) – Not sure if all these are related to fin, but thought I’d mention them anyway:
Numbness in the upper part of lower left foot. Middle toe is also affected.
Vibration in the back/right hand side of my neck when in bed.
Occasional tingling on right side of face.
Coldness in head of penis and testicles.
Muscle twitching/spasms, especially in legs.
Waking up throughout the night unable to get back to sleep.
Age spots.
Get the chills for no reason.

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    Vit D, Magnesium, Fish Oil, Dim, Tribulus, 5HTP, L-Arginine, pushups, Tramadol.

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

Hopefully this isn’t too long.

I first noticed I was losing my hair in my late teens. Seven years later in 2011 I decided to go on finasteride. I knew about the possible side effects but figured if I stopped the drug they’d stop altogether and I’d go back to normal as per the pamphlet. Boy was I wrong.

In the first few weeks I noticed my first side effect: a slight pain in my testicles. I assumed I was just being paranoid and as it was so minor I put it to the back of my mind and forgot about it. Over the next few years I experienced a myriad of other side effects that seemed quite inconsequential and thought nothing of, but in hindsight were definitely related to my ingestion of the drug. These included, among others: a low libido, reduced clear, yellow, ejaculate, absence of spontaneous/morning/night erections, and gynecomastia (to the point where I had to put tape on my nipples to reduce irritation (which I justified by placing the blame on a new shirt I owned, haha)). However, perhaps the worst side effect occurred in late 2012 when I woke up one morning and felt like I had an intense pressure on my bladder and had to urinate constantly. This was by far the worst side effect up until this point. Went to a doctor who thought it was a mere prostate infection and prescribed ciprofloxacin, which actually reduced the pressure over a few weeks and allowed me to sleep again.

Anyway, in mid 2012 I connected a few of the sexual sides to finasteride. It was at this point I decided to taper off the dose, and began taking 1.25mg every two days or so. A week later I crashed. Woke up in the middle of the night needing to urinate, and noticed my penis was numb. Began freaking out about the prostate infection returning and just thought I was being paranoid about the numbness. Next day I couldn’t achieve an erection at all and my penis felt rubbery and that’s when I found this site. Immediately had a borderline mental breakdown and went to a 24 hour clinic, no help of course and they just told me to go to my GP the next day. GP told me not to worry and that I would likely come right in a few days and if I still had issues in a week to pay him another visit. In this week I had some minor improvements, as I gained the ability to sustain an erection and have sex but my brain fog deteriorated to the point where I couldn’t focus at work and people kept asking me what was wrong. Anyway the doctor sent me off to get a thyroid test or something and gave me a script for Viagra and sleeping pills. What a joke.

At this point I read a bunch of stuff on the site about how opiates could increase 5ar activity in the CNS and thus, possibly, restore a certain amount of sexual function. For the next three weeks or so I took a small dose of tramadol (a painkiller I had been prescribed about a month before my crash when I pulled a muscle in my neck and couldn’t move at all) once every 3 days and immediately noticed improvements. My penis began sitting normally (still was rotated and slightly curved, but wasn’t as rigid, retracted or thin) and I could achieve an erection much easier. My brain fog improved to the point where I could function like a normal person. I could sleep again. The constant twitching stopped. However, after three weeks I ran out of the drug. For around two months after this the improvements stuck and I figured I was healing naturally and taking the tramadol was just a coincidence. I even began to develop more hair on my chest, arms and back and was having consistent nocturnal and morning erections most nights. Alas, most of the improvements began to dissipate. My penis began sitting more often in its prior state. It got much colder near the tip. My testicles got colder and less full. Brain fog came back in full force, possibly even worse than before. I even picked up a new side: the top part of my left foot has gone numb.

Not sure on what to do next, have been toying with the idea of a two week fast followed by a raw/paleo diet. Have also considered starting a methylation protocol like droit/mario but not sure. Just trying to stay positive at the moment as so many of us have improved at least temporarily, which to me suggests that this disease is reversible.

thought i’d update you all on how i’ve been going recently.

after making this thread i drastically changed my diet, cut out breads, starchs, sugars etc and ended up seeing no improvements and lost a bunch of muscle mass, body hair and a.m erections. after i started eating normally again, however, everything mostly reversed to its previous state.

i also started taking vit d again, this time adding zinc, magnesium, fish oil and a vitamin b complex. i think of all of these maybe the only thing that helps is the vit d, which i think increased the size of my testicles. the magnesium may have also helped with body spasms but i’m not sure.

over the last week or so things have been getting pretty dire. the main thing i’m worried about at the moment is the ever-growing fibrosis/curve in my penis. i have two or so ridges/rings on the right side of my shaft, and the same side has also collapsed. i mean, it’s completely flat/curves inwards whereas the other side has more “puff” and obvious girth. also, when i pull back the foreskin on the right side there is a dent. now i wasn’t really that worried about this because it didn’t seem to be getting worse, and it wasn’t noticeable when fully erect. however, lately i’ve noticed that when i have a bit more blood down there my penis curves quite a lot.

brain fog is still a complete pain in the ass and i would really love to get rid of it. i can still (mostly) function but it feels like i’m always three beers deep and it’s difficult to focus/recall words etc. i’m sure everyone knows what i mean, that heaviness/swirl. top part of my left foot is still numb, but as it doesn’t really affect me unless i touch it i haven’t been to a doc. my lower left eyelid has developed a persistent twitch over the last 3 or so weeks that i can’t shake. not sure why, think it may be because of the stress i’m placing on my liver with all the supps but can’t be sure.

gyne also got pretty bad a few weeks ago but seems to have stopped after i began the supps. have also been dealing with periods of prostate pain, though this is manageable at the moment i just hope it doesn’t get worse.

anyway, next step is to order some sublingual b12 and methyl-folate and try the methylation route. also, if anyone has any tips on where i could order cialis online i’d be forever grateful. would be great to combat the increasing curve.

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two years on, thought i should update even though no one really checks this anymore.

atm things are generally better than they were two years ago, but still not great. main worries atm are:

  1. brain fog - still have this and it sucks. mainly just feels like my cognition is impaired. it’s especially noticeable when looking in the mirror or talking to people as it’s really hard to concentrate and actually take in everything without focusing on just one thing. really hard to explain. brain goes into a daze when reading, especially anything complicated. my ability to hold conversations has also taken a huge tumble as i pretty much forget words constantly, slur them (“pacific” instead of “specific” etc), or say the totally wrong word in a sentence and have to back track.

really, brain fog is by far the worst symptom of mine and i feel like i could almost live an ok-ish life if i could just get it sorted.

  1. digestion - don’t think i mentioned this originally on the board as it seemed to be a lesser problem then, but it’s becoming pretty bad. basically either constipated or have diarrhea most of the time. usually comes on after eating. have to make sure i’m near a toilet constantly, which sucks whenever i’m on a long bus journey etc.

  2. gynecomastia - also don’t think i mentioned this too much, but it’s getting worse. have basically grown breasts that have an actual feminine like curvature to them. almost at the point where i need some kind of bra.

  3. numb dick/lack of erections - yeah, the usual. have periods where i can get erections at night but they mostly don’t happen anymore. originally thought working out helped but doesn’t seem to now.

have a huge amount of other symptoms (of course) but these are the ones that are affecting me the most at the moment.

oh, also the numbness in my foot finally healed up (i think?). have convinced myself it was nerve damage but it seemed odd as i had only been sitting on it for a short while. weird.

going to try and cut back on drinking in the future/exercise, and potentially take up meditation or something. gotta get rid of this fog.

Thanks for the update. I enjoy reading threads where we can see progress through time. Sorry things haven’t picked up more quickly for you, but (sad to say) at 2 years on, it’s still early in the game. Hang on.

Yeah completely with you about the brain fog, if it would just go away I’d be happy. 5years+for me now.

No improvement at all?

Na

Brainfog sucks… I often forget easy words or have to think more than i used to…
But persistent fatigue (in my case) is by far the worst.

Why do you even continue to live? Seriously. This is no way to live…

I don’t have any of that forgetting easy words, I just feel very disconnected from the world.

thanks for the replies guys, will try to keep this updated

everyone says brainfog is one of the things that tends to improve the earliest so i’m holding onto that thought at the moment

ordering some probiotics and might consider doing a mini water fast or something, we’ll see. obviously hard when working a reasonably physical job and living with a partner though.

Have you been able to try any methylation supplements yet? Getting those dialed in was very helpful for my own brainfog.

I take B12 and B-Complex but don’t really see that much of a difference. Any brands/recommendations?

yeah i did, i think i posted about my experience in one of the methylation threads.

used a sublingual b12 and folate (metafolin). have tried from scratch three or so different times and each time i’ve come out feeling terrible. brainfog gets amped up and all the crash symptoms start up again (tingling on side of face, twitching muscles/eyes/nose, bursts of tinnitus etc). think the longest i’ve lasted is a week.

Do you have full hormonal blood tests done? I have high but in range estradiol, but high low sbhg wich creates estrogen dominance even with normal levels. Addressing theses things could help.

Wanted to follow up if ur still here with the penile dents, have those improved at all?

Hi all. Back again unfortunately.

I’ve been mostly living the last however many years (almost 9?) as normal as possible. Definitely not recovered, basically with minor brain fog that i somehow managed to get used to and a reduced libido/numb dick etc. The worst symptom during this time was probably digestion, at one point i had diarrhea after every meal. This got a bit better with fasting and eating lots of probiotic foods but i still need to be near a toilet 24/7, especially when eating. Oh also, in April last year i went on a 35km bike ride for the first time and had a completely numb dick after. Felt like the crash. It slowly resolved a bit, but hard to say what numbness was from the bike ride and what was from the fin? I think we’re more susceptable to our extremeties falling asleep, so be careful.

I’d like to clarify in the first post i talked about tramadol helping me. It may have, but in retrospect i think it was because a month after i crashed i moved overseas with my GF. I think the improvements were due to a lack of stress and time not thinking about my condition?

Anyway that brings us to today. In early January this year i got a dodgy mole excised from my calf. It took a month to get the results, during this time i got super anxious and had pretty bad fatigue. Like i could sleep for 12 hours and nap for another hour in the afternoon. Also the brain fog ramped up. After i got the news that the mole was benign the fog didn’t go away. Left it for a week before i ordered some sups i thought would help… glycine, l-tyrosine and… tribulus.

On the Friday night i took 1 glycine pill and 2 of the trib. Woke up the next day and went to the bathroom… my dick was massive. Like the biggest it’s sat flacid for a very long time, was pretty stoked. Took another 2 pills and an l-tyrosine and went about my day. Went out to dinner and was definitely more axious than usual, put it down to the fog from the melanoma scare. Next day woke up to piss and it was a bit small and numb. But that still happens ocassionally so i ignored it. Next day woke up, think i had 1 trib pill? Less activity downstairs but not a full blown crash. Went to a friends place that night with v bad brain fog. Had 6 beers and felt exactly the same as i did on 0. Next day could still get an erection but definitely lost a bit of feeling. Haven’t taken any supps since, apart from vit d.

Just over a week later and I’ve def had some sort of crash. Praying i improve to baseline. I tried getting it up to porn and couldn’t a few days ago, managed to have sex afterwards but took a lot of manual stimulation. Last night i focussed as hard as i possibly could without stimulation cuddling my GF and got it up to about 70%. So it seems to be improving? Brain fog is not though. If anything it’s gotten worse. I have a driving test in less than a month that I’ve had to cancel and can barely work. Have to read sentences 8 or so times before i parse what they mean. Much much much worse than baseline. At least i’m not as fatigued i guess?

I cried for about an hour last night for the first time in years. It’s horrible. I could live with a half functioning dick and no libido, fucked digestion and urinary issues but i need my brain. It doesn’t even have to be 100% but at least back to pfs baseline. At least i could fake my way through life pretending i was normal.

Does anyone have any tips? I guess wait it out? I have a doctors appt in 2 days and I’m gonna try and get as many bloods as possible. At least PFS is considered a relatively real thing now? Will still probably think I’m crazy. Also should i try and get a referral to an endo or neurologist? Thinking neurologist? An endo wont be able to do much but prescribe me TRT or AIs right? Neither of which i want to take…

Anyway, sorry for the long post. A lot to catch up on! I’d also be grateful if anyone could let me know what’s come out of all the studies recently, I’m hearing up regulated ARs are confirmed and that there’s proven epigenetic change? Which means our DNA is fucked? Never went as deep into all the science as you guys.

Thanks!

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Not improved but hasn’t got worse, thank god

I never got bloods. I asked but my doc refused at the time. Idiot. Funny reading this thread back, i mentioned getting my thyroid tested but i have 0 recollection of that. Strange!

Hi @no_hope

I’m sorry to hear you’ve had a worsening. The best advice I can give you is to give it a few weeks to ride it out, as many people who report worsenings seem to regain their previous baseline. There’s every chance the neurological effects you’re feeling will dissipate if they weren’t a part of your baseline previously.

If you want to visit a doctor, I’d recommend taking our study abstract pack, which you can find on the PFS Network website. There is probably not much they can do, however, so I’d save your money.

There is indeed a lot to catch up on, as it seems you haven’t been around in 7 years! Baylor’s research published, which gives us the best understanding of PFS to date, and confirms what the group running PH has long hypothesised - that the AR is overexpressed in PFS patients. It also showed major dysregulation of gene expression. That doesn’t mean our DNA is fucked, it just means the way our signalling works is dysregulated.

There is also now a patient-led PFS charity, which was formed out of the group who runs this site. We have funded a new study into PFS a month ago, which will build on Baylor’s findings. We are also active on YouTube and our channel has many interviews and stories from PFS patients speaking out.

The best thing would be to have a look around our website and YouTube, and sign up to our mailing list if you’d like to stay up to date.

I hope this latest worsening levels out for you soon. Try to not think too far ahead and hopefully it works itself out.

Take care.

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