My Story (23 yo, took proscar for 16 months)

Member Stories
#1

  1. Where are you from (country)?
    Canada

  2. 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 - “finasteride symptoms”. Via link directly to this website.

  3. What is your current age, height, weight?
    23, 5’8", 160 lbs.

  4. Do you excercise regularly? If so, what type of excercise?
    Occasional walks.

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    A lot of carbs, a few vegetables, some meat. Not vegetarian, raw, or organic.

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

  7. For how long did you take Finasteride (weeks/months/years)?
    16 months.

  8. How old were you, and WHEN (date) did you start Finasteride?
    21, started on January 1, 2016.

  9. How old were you when you quit, and WHEN (date) did you quit?
    23, quit on April 30, 2017.

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

  11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    I think Proscar, but the box just says “Mint-Finasteride”, so it’s more likely generic.

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

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

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation?
    Frequent urination (this has gotten much worse), puffy nipples, mild brain fog, less feeling in penis, increased body fat %, and mild pain on right side of penis (early onset of Peyronie’s Disease?).

Put an X beside all that apply:

Sexual
[X] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[X] Loss of Spontaneous Erections
[X] Loss of Nocturnal Erections
[X] Watery Ejaculate
[X] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

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

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

Misc
[ ] Prostate pain
[X] Persistent Fatigue / Exhaustion
[X] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[X] Increased hair loss
[X] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    None so far.

  2. If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)?
    I’ve taken several blood tests since stopping but I haven’t been given the results. I’ve only been told that “everything is normal.”

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?
    When I first took the drug at the start of January, 2016, I had a bowel movement within a week or so that was mostly bloody. This scared the crap out of me, as I had never experienced anything like that. There was also some pain I could feel around my prostate during that time. So, I quit the drug (will explain more below). I’m worried that this was permanent damage that my prostate had suffered, and is why I’m going through bad frequent urination right now.

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
    So, as I said above, I started in the beginning of 2016, but quit within a week due to sides: testicular and penile pain, and a bloody bowel movement that scared me. But, I started again within a week to give it another chance, because at the time my hair loss was upsetting me a lot (I’m an anxious individual, so taking the drug put my mind to ease over losing hair). Same thing, side effects were still there: testicular and penile ache, although no bloody bowel movement, but some pain in the prostate during a bowel movement. So, I quit the drug yet again. However, being the stubborn person that I am, I said to myself that I would give it one last try, and if there were any sides at all, I would quit for good. But, I had only one minor side effect on my third try, so I took the drug until the end of April of 2017. The only mild side effect was slight ball ache, and this eventually went away.

To date, I’ve been off of the drug for about 10 months, and I have been having severe frequent urination. It’s gotten to the point where I have to get up 2-3 times in the night to go, whereas before I started the drug I never had to do this at all! During the day I’ll urinate (say 3-4 ounces), and then 20-30 minutes later have the urge to go again. Mind you I do keep myself hydrated. I drink about 80-90 ounces of water in a day (only water as well). But to me it seems like my bladder isn’t fully emptying or something. An enlarged prostate could definitely cause this, at least according to what I’ve read online. Plus, my prostate could be pushing on my bladder, giving me the feeling like I have to go.

So, as you maybe can tell I’m very worried and upset about all of this. I recently had a blood test and urine sample done, and they both came back normal (no infections). I wasn’t given the actual results of the blood test, however. I plan on seeing my doctor again, hopefully soon, and I hope to be referred to a urologist. The problem with all of this is that due to my age, medical professionals dismiss any notions of me having prostate issues, despite me telling them I was on finasteride. So, I guess I’ll have to push at them more, because I cannot function with this frequency of urination. I haven’t had a full, proper night’s rest in weeks. How can I possibly work at a job if I have to constantly use the bathroom?

Are there any others here who have had an enlarged prostate from this drug and/or frequent urination? I would really appreciate some input on this. Thank you for taking the time to read this if you did.

1 Like
I Finally Know What’s Wrong With Me
#2

I made a mistake. I took 1.25 mg every day, or 1/4 of a 5 mg tablet.

#3

And how did your doctors explain this blood in your stool?

Any others? Like 20-100% of this forum! Others have told me frequent urination subsided once they got their vitamin and glutathione levels up via IV (blood). Just do not take dangerous supplements for the prostate, it may make your life a living hell. Eat broccoli and try broccoli extracts if you experience prostate pain.

#4

Well I never told any doctors about it. My frequent urination has subsided a bit, but for the last three weeks (as of writing) I’ve had a constant ache in the right side of my penis and the right testicle. My penis also bends to the right, so I’m pretty sure I have Peyronie’s disease. Honestly I think I give up regarding this drug. I can’t win this fight, and even if I could, there’s nothing worth fighting for when you’re a short, physically unattractive, low iq male living in the West. But thanks for your reply. One thing I will note. I drank pomegranate juice for a week because I read somewhere that it can help the flow of blood through arteries, and my ache went away. Could just be a placebo, though.

#5

Penis curve can easily be fixed. Take acetyl l-carnitine (500mg-1000mg) every night for like 2 weeks. you can combine it with arginine & ornithine before bed. or just buy “CarnitAll” from Jarrow which has both

Are you trolling? If you’re not white, what the hell are you doing in the west besides filling up the internet with gibberish? Don’t toy around with your life, you’re a man remember? Go where you’re needed and treated with respect, don’t put up with a demeaning life

#6

Vice News of all places had a great article on PFS and I quoted the anxious men having a predisposition part. The month I took fin I was going through the highest levels of stress I’ve ever experienced. Losing hair only adds to this because you don’t want to suddenly look like a different person in the span of a few weeks because of some bad luck. The irony is men with high levels of anxiety are the ones who bald prematurely and but probably also the ones who are most likely to crash from fin and get hit with the worst pfs. Before fin I had a good threshold for stress and was able to multitask and not break a sweat but as soon as I crashed I couldn’t watch a movie with yelling and explosions the stress was too much.

#7

And so my quest to find out what the hell is happening begins. Today I am having scans on my thyroid and digestive area. Who knows what this could reveal, some sort of hormonal imbalance, a gut issue? And then towards the end of November I’m having an ultrasound of the prostate, bladder, and kidneys. It could be prostate cancer, BPH, prostatitis, something else perhaps. Here we go. I’ve waited so long for this, finally some investigation will take place. I’m going to be updating this thread with the results, even if nothing is found, as maybe it will help others. By far my worst symptom is frequent urination, so anyone who has that symptom as well may benefit from reading my posts after this one (depending on what is found).

To recap, the issues I’m currently having are:
-ED (trouble getting and maintaining erections, reduced ejaculate)
-Less libido, though it still exists
-Smaller penis (both in length and girth)
-Penis curves to the right (Peyronies disease?)
-Dull ache in right side of penis at base and along shaft which has persisted since March of this year
-Urination issues, which include: trouble starting, trouble pushing it all out (it’s like the muscles/tissues in my penis are all dead and I have to push from within me), the sensation of not all of the urine being dispelled and staying in my urethra, some incontinence (the little urine left in my urethra leaks out afterwards), starting and stopping, getting up in the night, increased urge to go and less of an ability to hold it
-Digestive issues, which vary: right now, constipation. Before it was going too often. But as of now, I’m unable to fully dispel all of the waste (perhaps 85% of it). Also a reduced sensation in that area when going
-Burning feeling/ache/mild pain in the area that I suspect is my prostate
-More pronounced gynecomastia
-Ears were ringing every day/other day, has subsided a bit recently
-Increased fat around midsection (belly, “love handles”)
-Takes me longer to fall asleep and I wake up earlier than usual
-Brain fog (forgetting things in the moment that I was going to do, less clarity/focus)
-Depression
-Anxiety that is panicky (I’ve had social anxiety most of my life but have NEVER had anything close to a panicky feeling, and I’ve been in some pretty socially stressful situations)
-Weaker and less stamina when exercising (weight lifting)
-Dark circles under my eyes, I’ve never really had this before
-Vision is a bit more blurry

Hopefully these scans will reveal something or at least get the ball rolling on finding out what the hell is going on. If nothing is found and things get worse, this drug may lead to my demise. I’m not trying to sound dramatic or anything, just being honest.

1 Like
#8

Hi there,

I’m really sorry to hear what you’re dealing with. As part of our community, I’m sure everyone would like to help out any way we can. You should do some reading, get involved in helping wherever you can and ask some questions.

At the moment, advancements are being made in the science of things and this forum itself is leading a couple of initiatives. We are getting closer to understanding the mechanism of acquisition. This means that treatment is also closer. There are medicine(s) close to market which it is hypothesised will be useful to PFS sufferers. There are numerous efforts being written up on the forum which some are finding relief of symptoms with. Many people are living essentially a normal life while dealing with this. Some people are reporting symptom resolution without doing anything at all.

So, once you’ve worked out which symptoms you wish to target, perhaps look to what you can do to potentially help them. Something might work for you. Some things may not.

Could you take a 23&Me test and submit your results to the forum, please. This sampling will help us all down the road to treatment.

Shortly we will issue a comprehensive survey which will also help to pin down what we’re dealing with. This will help us on the road to treatment.

If you are able to, please set up a recurring donation to the foundation. This will help us fund scientific studies that will, you guessed it, get us closer to treatment.

People here are very helpful when able to be, in my experience.

#9

Hi Greek, thanks for the response. I am aware of the dna results that people are submitting. I was waiting for it to go on sale (the health one, not the basic because I already have an ancestry order) but it hasn’t yet. I may end up just buying it anyways. It’s good to read you saying that advancements are being made, but I’ve heard and read that before so many times that it’s hard to believe. The Baylor study has been going on for 5 years or something? That thing should’ve been done a couple years ago, right? Still, I don’t mean to sound too pessimistic. I may donate to the foundation, however I’m unemployed right now but if I can find gainful employment I most likely will.

1 Like
#10

The Baylor study has been delayed a number of times, it’s true. As I understand it, this is due to the vast amounts of data that they are dealing with.

Your mental attitude to this is one of the hardest things to get right. If you can psyche yourself into the idea that this isn’t going to beat you and you’re going to get better, you’re gonna be ok.

Sorry to hear about your unemployment, it must suck dealing with all this enough, I know, but if you’re not occupied or distracted from it a little it must be harder. I hope you’re able to distract yourself and are able to enjoy things.

Unfortunately, the biggest thing we all have to do is hold on.

1 Like
#11

Well, I’ve finished the thyroid and abdominal screenings. I won’t have the full results for a few weeks, but the ultrasonographer reported two issues: (1) he was unable to find my left kidney, which means it either never existed or it has shrunken. When I googled a shrunken kidney, it basically means a kidney that has atrophied, a word I’ve seen used on this website a lot regarding finasteride’s effects. That’s concerning. Could finasteride have caused my left kidney to atrophy, like it potentially did to my penis and prostate? (2) He found multiple nodules on my liver, which is concerning because it could be cancer. At 24 years old, wow… The nodules, again from googling, can occur from scar tissue I think, or blood vessels being blocked, which again sort of relates to finasteride. When I get my results I’ll try to upload the relevant pictures to this thread.

#12

For whatever reason, they didn’t give me the ultrasound pictures, but they gave me a full report. I will quote the report and relevant parts from the abdominal screening (the thyroid screening came back fine).

FINDINGS:
“The gallbladder is normal in size without pathological distention. No echogenicities with acoustical shadowing are noted within to suggest the presence of gallstones. No generalized or focal gallbladder wall thickening is observed. No pericholecystic fluid collection is observed. The liver is normal in size without hepatomegaly. Multiple tiny echogenicities are noted throughout the liver most consistent with thickening of bile duct walls without obvious intrahepatic or extrahepatic biliary duct dilatation generally, nonspecific, which may represent bile duct wall thickening (cholangitis, for example), physiologic bile duct wall thickening, etc. Please correlate clinically. No cystic or solid intrahepatic mass lesions are seen. The imaged portions of the spleen, pancreas, and right kidney appear unremarkable. The right kidney measures 11.2 cm in length. The left kidney cannot be sonographically identified in its expected position, at this time. This is nonspecific and may represent marked hypoplasia or absence of the left kidney, ectopia of the left kidney, etc. What can be seen of the abdominal aorta appears unremarkable. No upper abdominal ascites is observed.”

“In view of the findings discussed above, and, should clinical symptomatology suggest occult pathology or the like involving the abdominal viscera not evident presently, further assessment with computed tomography or MRI may be of help.”

IMPRESSION:

  1. No evidence of cholecystolithiasis and/or intrahepatic/extrahepatic biliary duct dilatation.

  2. Multiple tiny echogenic foci throughout the liver suggesting nonspecific bile duct wall thickening. The extrahepatic biliary tree including the common bile duct appears normal in caliber.

  3. Absence versus ectopia of left kidney. Please correlate clinically.

  4. No discrete splenic, pancreatic, or right renal lesions identified.

  5. No upper abdominal ascites identified.

#13

I had an ultrasound done on my prostate, bladder, and kidneys. Everything was normal except they found that I only have one kidney. I guess I’m glad to hear they didn’t find any issues, but also disappointed because I still would say that I have PFS, but have nothing to go off of.

#14

I should’ve updated this more often but here we go.

For the last month I’ve suffered with hearing difficulties in one ear. Well today I woke up and both ears have a low hum, I can still hear but it’s definitely worse. I’ll be seeing an ent in a couple weeks and getting a hearing test soon so I’ll update when I have the results. But this tinnitus is awful, I always hear a low humming and my ears both feel somewhat blocked and plugged and full of something. I saw a doctor two weeks ago and he looked in my left ear and saw no obstructions.

Digestion is still bad although I’ve been seeing an alternative health practitioner (who spotted some of my issues without my input which is remarkable) and she’s got me on supplements. Vitamin B complex, UC3J, and lily of the desert juice. I’m also not to eat any cheese for two months.

Still have knee pain, can’t run more than two minutes without them hurting A LOT, then I have to limp home.

Still have frequent urination.

Still have occasional pain in my member at the base right side.

I think I’ve gotten dumber. I’m more forgetful than ever before, and I used to have a very good memory. Now I don’t.

The hearing problems are scaring me a lot because I’m afraid I’ll go deaf, or that I have Ménière’s disease. My left ear has had trouble for over a month, now it feels like both.

#15

Did your libido and ed issues end up resolving?

#17

Mostly, yes. That is actually one area that I don’t seem to struggle much in. I’ve always had a higher-than-average sex drive (I think it’s above average, I could be wrong). The only remaining issues are that it still curves somewhat to the right, and also occasionally I have a pain at the base at the right side, a deep aching pain. Nothing like it used to be, not nearly as frequent, but still lingers once and a while, probably ever day for fleeting moments. But yeah, libido is high, almost too high.

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#18

Woke up at 3 am feeling really nauseous. Got out of bed and went to basement in case I had to puke, didn’t want to wake family. While going downstairs my chest feels tight, I feel weak and dizzy, sweating, about to pass out. Grab aspirin and sit on couch, phone home to say I need help. Barely keep myself from passing out. Chew an aspirin, slowly feel better with some symptoms. I’m now in hospital, fearing I have a heart problem.

If I don’t reply to this post in a week it means I’ve died. If this is the case I want to say thank you to all of the forum members here who have helped me over the years. Your dedication to this website and research into this issue is immensely appreciated and has helped me cope with PFS. I sincerely hope you all get better and that Merck is held accountable one day. I’m also very sorry for offending anyone on this forum, especially the mods and admins. Like all of us, I’ve had dark times and haven’t always kept my anger in check. You guys do a tremendous job running this site, and you should all be very proud of yourselves.

God bless,

Wings

#19

Don’t worry, you will be fine. Wish you quick recovery. Let us know when you will get back home.

1 Like
#20

So, thankfully I’m still alive. Also feeling a lot better. Thanks for the kind response, @iull1k . However, I’d like to state that I was not over-reacting. Doctors aren’t sure exactly what happened to me, but they know for sure it wasn’t a heart attack. I’m a relatively fit 26 year old who, upon entering the ER that night, had a blood pressure of 140 over 84. That is definitely high. Even several hours later, it was 129 over 84. However, I saw my doctor today and he checked my bp and it was 112 over 72, which is way better and definitely normal. They think I had some kind of bug or something, and due to the intense nausea I started to panic which brought on other symptoms. However, my money is still on it being heart related. Hopefully it wasn’t though.

#21

I doubt it’s heart related. I had 3 years of excessive somatic symptoms, i had blood pressure 180 over 64, i had a pulse between 150-180. The second day my BP could be 90/55. Frequent excessive urination, diarrhea, extreme anxiety without any reason, anhedonia, anal pain /itching, bloating, foggy urine, right/down abdominal sharp pain, penile numbness, and in the same time hypersensitivity (something like PGAD). Not to say about other regular PFS symptoms like extreme brain fog and so on.

There were a lot of days when I said goodbye to my parents and thanked them for everything because I thought it was the last day.

Disbalances that are created by hormonal disruptors are just insane. When i had read your post i understood what do you feel perfectly.