A Sensationless Journey to... Nowhere?

Member Stories
#1

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?) Googling numb penis and finasteride symptoms/stories/information

What is your current age, height, weight? 30, 5’10, 150lbs

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 inconsistently (every 3 or 4 days) then 1mg nearly every day or EOD.

What condition was being treated with the drug? Hair loss

For how long did you take the drug (weeks/months/years)? 2.5 years

Date when you started the drug? June 2020

Date when you quit the drug? January 2023

Age when you quit? 30

How did you quit (cold turkey or taper off)? slow, very gradual taper in attempt to avoid hormonal axis disruptions or DHT burnout

How long into your usage did you notice the onset of side effects? 1.5 years

What side effects did you experience that have yet to resolve since discontinuation? numbness in half of my penis, my testicles/scrotum and partly perineum. Not total loss but loss of small fiber nerve - surface area (all erogenous areas gone mostly). Muscle/pelvic floor atrophy

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

Mental
[ ] Emotional Blunting / Emotionally Flat
[ X] Difficulty Focusing / Concentrating
[ ] Confusion
[ Memory Loss / Forgetfulness
[ X] 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
[ ] Suicidal Thoughts

Physical
[ X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ XX] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[X ] Muscle Wastage
[ X] 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
[X ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ X] Other (please explain) Insomnia which ive never suffered from.

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? I have not started treatment yet, however after an entire year of normal MRIs and tests, I was told by a neuropathic neurosurgeon this is likely due to trauma to the area, and was going to start PRP, possibly acute stem cell nerve regeneration therapies.

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 got many CBC and CMPs over the last year and they were all normal, even testosterone was about what it was before maybe a bit lower now but nothing reallly stuck out.

Anything not listed in the above questions you’d like to share about your experience?
Below
Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
I was supposed to start Pharmacy school in August of 2022 but did not due to mainly this issue affecting summer school completion. so I am vey good at researching and know what to look for/analyze with drug therapies usually. I was VERY hesitant to start FInasteride at age 27 in 2020 but I was starting to noticeably bald around the crown of my head and was eager to get hair loss to stop. I researched heavily at the time due to th e possibilty of sexual side effects. I read journal articles about experiments and trials, watched youtube testimonials, everything. At that time, the basic BS stats of "only about 2% of patients develop serious side effects and in the event they do, they are reversible upon cessation of the drug,
and everything being hyped up was a “nocebo” situation. This was plastered everywhere and even in forums i rarely saw people complaining of these side effects as being life ruining or rampant. Literally it was a different world of google results less than 3 years ago which is baffling to me. So i started it thinking benefit DEF outweighs risks. I had no side effects for 18 months. Granted, during that time I took it sporadically whenever I remembered (sometimes 4-5 days in between) so avg maybe 1mg 2-3x per week max.

Then one day in December of 2021 I went to pee and I realized I could not feel the stream in the bottom half of my urethra (sounds weird but youd know if you felt it) and realized the underside below the glans was pretty numb. This was December 2021. I spent the next 14 months (until this month) thinking I had a spinal issue of some type that was damaging nerves. Thousands of dollars in imaging and tests later, i realized it was probably FIN. A few weeks ago, I met with a very specialized neurosurgeon who practices as a neurologist in neuropathic conditions and he gave me the first ray of light AT ALL in any form of an answer to what I have been going through for so many months. After seeing Neurologists in 3 different states, being turned down by the Mayo Clinic with referrals, and a team of Neurosurgeons and Orthopedic surgeons seeing nothing but a small disc protrustion at my L5-S1, I had zero answers and diminshing hope for the last 14 months straight. This new Dr. said it was likely trauma to the area and explained the domino effect of dying nerves. I was given treatment options such as PRP, E-stim, PEMF, Light therapy etc to hopefully regenerate damages nerves and regain mostly full feeling back. About 2 weeks ago I really starting researching neuropathic side effects of Finasteride, and realizing after reading countless, hopeless and dire stories of people with this permanently with no end, I realized my worst fear was happening before my very eyes, and this likely will never return to normal, and neither will I. I even took FIN like an idiot during the last year thinking “i just researched it before starting it”, PFS was not a talked about thing, and neuropathy being a side effect was unknown to me. I did not think so much more news was out about it and just never looked. Biggest regret ever. Never knew that the underreported studies by the Manufacturers turned out to be just that, but that a rate as high as 6x more patients had these devastating side effects - i had no idea until literally a week ago.
That is a lawsuit in itself, and not just devoid of morality, but literally life ruining. My symptoms luckily never included depression (outside of the situation happening), loss of libido or total ED. My libido is as high as ever which is why it reallly sucks. If I had known even a minute chance existed that this could happen i wouldnt have touched that poison with a f***ing 10 mile pole. But here we are. SO glad some can finally relate after 1+ years of total confusion, dead ends, NO ONE to truly relate or talk to about it, and really the most terrifying and singularly isolating experiences ever of life.

Self-reporting template - ONLY USE FOR FUTURE POSTS TO REPORT ANY TRIALS OF TREATMENTS, NOT YOUR INITIAL MEMBER STORY

  1. Name of the therapy/substance:
    • Dosage:
    • How often you took it:
  2. Status
    • Still using [ ]
    • Stopped with no lasting change to initial symptoms [ ]
    • Stopped with persistent change to symptoms [ ]
  3. Duration of use: Days [ ] Months [ ] Years [ ]
  4. Response when you started:
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  5. Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  6. Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
2 Likes
#2

It’s a tought journey ahead, I would say until we find the specifics of our issue which appear to be of epigenetic origin we should avoid anything that worsens our state and try to find a lifestyle where we are somewhat functional.

It’s a large road knowing the new you and understanding your new limits, what you can/can’t do and where/how/onwhat you are stable.

For instance, someone who needs their brain to work but got IQ damage in their PFS should adapt to a meaningless work in a warehouse or something, like a guy pointed how he got the warehouse job and then declined being promoted to an office with a higher salary because he knew his damaged brain would not handle the work. This kind of adapt stories is what will lead you to a bearable life.

In meantime we will work together towards a solution and hopefully an ease to the suffering of any future PFS patients

#3

Have you tried PEMF? how many sessions and what is the result?

thanks.

#4

Interesting. Let us know how the neuropathy treatments are going and if you have any benefits.

1 Like
#5

No, I did extensive pelvic floor physical therapy with a therapist that close to my age and he specialized entirely in male pelvic floor inclulding hard flaccid syndrome (I was first PFS patient though). So I could tell I was getting the best of the best pretty much (thats non-invasive) on the market these days. This included:

  • sacral dry needling (dont worry they are planted above your tail bone) and 3 different types of electrostimulation with that were used every time. I think they varied between inhibition, excitation and facilitation.

RESULTS: I transiently felt better after each treament which was 2x a week. Would loosen things up and help with sensation a little but but like clockwork it would go back to the “new normal” within 48 hours or so. which is shit. I did rhis for the recommended 15 sessions I think. comlpete PFD and any improved noticeable sexual symptoms returned within 2 months of stopping or less.
returned withI

  • Shockwave/ GAINSwave therapy This was super expensive and was not approved by my insurance of the facility as if twas $500 per session. I did 5 I believe eive over a month and a half.

RESULTS
It drastically improved my pudendal and dorsal arterial bloodflow with each session, but I have no idea what those measurements have been since. Also the shockave absolutely nothing for me

  • I had a neurologist I was already seeing because of my symptoms for a year prior to that (did not know fin was the cause) and he happens to have a clinic that does PRP, PEMF as well as early stem cell based treatments, photo and I think acoustic wave therapy rather than shockwave, however he refused to treat anything in that area for me because he had never heard of PFS and was not comfortable trying non indicated treatment on me, which I understood but was still annoyed af.

TBF: I think the genital tissue specific to the penis, part of the testicles and the scrotum has the highest concentration of 5-AR and DHT activity besides the prostate anywhere in the body.The androgen receptor became dysregulated and the body likely overcompensated to drastic androgen deprivation by overexpressing the AR complex in these tissues and in the brain, and that has a ton to do with the lack of feeling, especially if imaging tests have come back normal. DHT is also extremely vital when it comes to nerve health regulation, especially in those tissues and epithelium as well, so it could be a transient lack of nerve function which I would think is reversible vs visible nerve damage.

TLDR: I did not do PEMF but if you try it let me know how it goes. I did shockwave and electrostimulative dry needling which helped for short periods of time but always went away. Couldnt cure PFD or numbness- still have. I think the reasoning for the numbness and tissue alterations in the penis are because direct modifications occured to the function and expression of Androgen Receptors in extreme DHT deprivation, causing oxidative stress issues and disrupting nerve regulaton in SRD5AR tissues. All I can say is I have been so patient through all of this and im REALLY starting to* become worried by the fact it has now been 3 years and it seemingly has only deteriorated further. I absolutely need answers soon.

1 Like
#6

I’m just confused on one thing. Under results about the shockwave you said there were improvements but the last sentence said shockwave did absolutely nothing for you

I was considering doing it possibly I just wanted to get some Clarity if I could on what you meant.
Thanks man