Issues since 2012

[Epoh]

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
What is your current age, height, weight?
30
6’4
235
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.)?
5 mg generic tabs that I would cut into quarters (was cheaper than using name brand which I couldn’t afford)
What condition was being treated with the drug?
Hair loss
For how long did you take the drug (weeks/months/years)?
About 4 months
How old were you, and WHEN (date) did you start the drug?
Feb. 2012
How old were you when you quit, and WHEN (date) did you quit?
21
How did you quit (cold turkey or taper off)?
Cold turkey
How long into your usage did you notice the onset of side effects?
Issues while taking. Stopped and then issues picked up.
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
[x ] Watery Ejaculate
[x ] Reduced Ejaculate
[x ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[x] 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
[x ] Extreme Anxiety / Panic Attacks
[x ] Severe Depression / Melancholy
[ ] 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
[x] Weight Gain
[x ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[x ] Joint Pain
[x ] Dry / Dark Circles under eyes

Misc
[x ] Prostate pain
[x ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[x ] Tinnitus (ringing or high pitched sound in ears)
[x ] Hearing loss
[ ] Increased hair loss
[x ] Frequent urination
[ ] Lowered body temperature

[x ] Other (please explain)
Sleep paralysis
Sleep issues
Random shooting pains what felt like was coming from inside my anus
Balls hurt
Flaccid penis would sometime retract into me when working out and bending over.

Went from being able to compete rigorous training on a regular basis to having trouble keeping consistency. While competing I was training 5 days a week with rigorous weight training. After experiencing symptoms I would find it very hard to train on a consistent basis. I’d workout for 2 or 3 days then be exhausted. I found recovery much longer.

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

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 work - i have post work from 2014 which i will add

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.

Division 1 athlete (runner) who had no issues with mental or physical functions. Started taking the finastride and experienced some issues. Was in the shower one day and tried rubbing one out to no success. Noted how my penis was smaller than usual, harder, and somewhat misshapen. Thought this was the “temporary” side effects that sometimes happen early on when taking the drug. Was able to perform sexually but noticed feeling was reduced. Also noted the shape was off when taking after condom after having sex. Eventually decided to finish the rest of what I had before stopping cold turkey. Felt fine and then eventually realized something was very wrong. When from being insatiable (getting erections in class at sight of women, ability to have sex multiple times a day over a short time period) to having no drive. Drive fell off a cliff, I remember thinking “is this what it’s like not thinking about sex all the time?”.

Had issues with sleep, mentally felt very low, tired, sore joints, etc. Tried working out to get better but didn’t work. Eventually found a doctor to run test but he concluded my test was in the right range (~600) and gave me cialis.

Over time some symptoms have stopped, ability to get erections has improved but still off. If I remember different things I’ll try to add.

[Ultra]

Hello!
I see many relatable moments in your story. Have you tried any treatment beside cialis?

Also could you add a bit more details about those shooting pains? Looks like, I might have experienced something like that. And it’s the first time I see this symptome mentioned.

[Epoh]

Sharp stabbing pains. They were relatively brief and would happen at random. For example I remember being in the car on the way home from work one time and it happening while I was stopped at a red light. By the time the light changed it had stopped.

Over time this has stopped. I don’t remember the last time it has occurred.

Sound similar?

Edit: no other treatment tried. Didn’t want to mess anything up any further.

[Epoh]

Bloodwork

Taken 9.26.2014

WBC 6.2 K/uL

RBC 5.10M/uL

HGB 15.5g/dL

HCT 45.2%

Mean cell volume 88.6 fl

Mean Cell Hemoglobin 30.4 pg

Mean Cell Hemoglobin Conc 34.3 gm/dL

Red Cell Dist Widh 12.6%

PLT 203 K/uL

Sodium 136mmol/L

Potassium 4.4 mmol/L

Chloride 99 mmol/L

CO2 29mmol/L

Anion Gap, Serum 8 mmol/L

Glucose 96 mg/dL

BUN 18 mg/dL

Creatinine 0.98 mg/dL

Total Protein 7.2 g/dL

Albumin 4.8 g/dL

Calcium, Serum 9.7mg/dL

Total Bilrubin 0.6 mg/dL

AST (SGOT) 31 U/L

ALT (SGPT) 37 U/L

ALK PHOS 59 U/L

FSH 3.1 IU/L

Estradiol 24 pg/mL

HCB A1C 5.3%

Triglyceride 91 mg/dL

Cholesterol 204 mg/dL

HDL Cholesterol 43 mg/dL

LDL Cholesterol (Calculated) 143 mg/dL

Total Cholesterol / HDL Ratio 4.7

LH 5.2 IU/L

Testosterone - Free 15.6 pg/mL

Testosterone - Total 625.0 ng/dL

TSH 1.99 ulU/mL

This was all taken after seeing a local urologist. After seeing the results and the T number he prescribed cialis.

[Ultra]

Exactly. Acute spasmatic piercing pain somewhere in the bottom (I couldn’t even identify the source), going up to the belly. Lasts several seconds (that seem like eternity) and disappear. Due to rarity, randomness and short time I didn’t consult a doctor about this. And until I saw your post, I hadn’t connected it with my syndrome either.

[Epoh]

Wanted to mark down that I have an appointment scheduled in January with a local doctor.

Been trying to figure out where I can get my blood levels checked on my own since I’m a few weeks out. Quest diagnostics is in my area but I just don’t know the cost and trying to get estimates over the phone I can up with like $10k?!

Hoping anyone who has experience getting blood work on their own (and sees this) can point me in the right direction and give me an idea of cost and how to go about it.

[Ultra]

I have just checked my blood levels (planning to see a doctor in January too)but unfortunately I don’t know how they do it in the USA. If you will get your blood work, I’d be really curious to compare some things as for the first time I’ve found some deviations in the tests.

[Epoh]

@Ultra will keep you updated re bloods

Anyone have experience with getting gut microbiology tested? What kind of doc can order tests? Looking to take a multi pronged approach.

[Ultra]

I believe it must be a gastroenterologist.

[finaduta]

Epoh,

After all that time, if worst moment after discontinuation was 0
where are you now in physical sides, mental sides and sexual sides?

You could have a normal life in some way?

[Epoh]

It’s hard to say and even harder to describe in a concise way.

I got hit with issues right at I was finishing school. Fortunately I was able to graduate and get a job. Have held a job since then.

I don’t believe cognitive sides were as Extreme as some report on here. I do feel like my memory was somewhat affected. I also had trouble with confidence early on, would sometimes stop sentences midway through, and even had trouble figuring out if I was using the right words. When putting together sentences in emails I would question if they made sense. That has resolved overtime for the most part. I believe my memory is still somewhat affected. Only those close to me seem to notice though.

In terms of the physical sides, I still have shrinkage, but the ability to get an erection and maintain it has improved. I can have sex. Sensation is still affected and varies. Refractory period is way longer. Note I faced no issues whatsoever with ED prior to taking this drug.

From the outside I live a normal life which is true except I am dealing with these issues. Luckily I was able to get into a relationship and stay in one.

Because you asked for numbers I’d say 8/10 but who knows.

I will add, for those visiting this website but not sharing their story, I did the same thing for a while. I would encourage you to create an account and share your story. The more people on here that are going through issues the better for the cause of trying to figure this out. Fill out the survey, share your story if nothing else.

[Epoh]

Realized I never posted a follow up. Went to see a doctor in NY that I found on this website. Dr had seen a number of patients with the issue. Put me on a regimen of cialis 20mg MWF at noon and 5mg every night. So far it has helped with EQ. Sensitivity is still not what it was though.

Doc mentioned some people have had physical sides get better with this after a few months.

I’ll keep updating.

[Deadinside]

Did your tinnitus eventually subside. I also suffer from the same sharp spasms bottom of stomach into the groin. 4 months post fin they have decreased in occurance but still happen time to time.

[Epoh]

Unfortunately it did not. Over time I have learned to ignore it.

[Epoh]

Keeping up with the regimen of cialis. Has helped with performance. Sensitivity has not improved much. Confirmed veinous leak via ultrasound. Also it was mentioned there was slight tissue scarring.

[Ultra]

Did they tell you what could cause the scarring and venous leak? And in what part was the scarring observed?

[Epoh]

To you first question: unfortunately they did not. For the second: part of the shaft.

Apologies for the delay.

Quick plug to the lurkers reading this who have not created an account - do it, post your story. It doesn’t take too long, and the more this community grows the more attention it will get.

[PeaceHugs]

I get my lab tests at an AnyLabTestNow.com location near me. The Walgreens near me also has a labcorp in it, and I’ve walked up to the pharmacy counter and asked for a test and gotten it. They send generic emails encouraging people to pick their tests and come in and get them. I’m practically buds with the guy at AnyLabTestNow at this point. For me the cheap Testosterone test was like $50, the full was $100ish, and the full “male” panel was like $350. The expensive test was Dihydro-Testosterone which was $200ish for just that one test. Zero prescription necessary, no appointment necessary.

I’m not sure if this will come through, but it’s a pic of my local Walgreens sign and you can see it says, “Labcorp” below the Walgreens. I’ve also just walked into a Labcorp location and asked for them too. They also send me lots of emails advertising different tests people can get (like Vitamin D, etc).

[iHATEMerck]

Hey @Epoh

It looks like you imporved signifcantly which is amazing! The fact that you have a gf and can have sex properly is amazing HOPE for me

Can you talk a bit more about your ED improvements??

• How is your senestivity now?
• Can you maintain an erection without cialis?
• How close would you say you are sexually to 100% pre-fin?

Thanks

[AaronF]

Small world