note: I have a fairly long personal story I typed out at the end of this survey. My history, my issues, and my recent visit to a doctor along with treatment and initial feedback. I cover more than just Fin with regards to E.D. So you may want to read through the end.*
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How did you find this forum?
Googled finasteride/side effects -
What is your current age, height, weight?
31, 6’1”, 180 -
Do you excercise regularly? If so, what type of excercise?
Weights 2x / wk, Jogging 2x / wk -
What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
Well balanced, high fiber, lean. Chicken, fish, pasta, salads, etc. -
Why did you take Finasteride (hair loss, BPH, other)?
Hair Loss -
For how long did you take Finasteride (weeks/months/years)?
Approximately 9 years. From 2000 thru late 2008 -
How old were you when you started Finasteride?
21 -
How old were you when you quit?
30 -
How did you quit (cold turkey or taper off)?
Cold Turkey -
What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
Proscar -
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1.25 mg/dialy -
How long into your use of Finasteride did you notice the onset of side effects?
In my 7th and 8th year, ED issues were undeniable, and energy and mojo and just…”lifeforce” started fading severely. Looking back, there were signs of degradation in sexual ability even as I was exceptionally horny and active and capable. -
What side effects did you experience while on the drug that have yet to resolve since discontinuation?
Put an X beside all that apply:
Sexual
[ ] 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
[x] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[x] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[x] Extreme Anxiety / Panic Attacks
[x] Depression / Melancholy
Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[x] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[x] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes
Misc
[ ] Prostate pain
[x] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature
[ ] Other (please explain)
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What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
-Began treatment about 2 months ago.
-6 weeks of Clomid, 2x / wk, 50mg
-6 week boodtests indicated doubling of T & DHT (but DHT still below the lowest # in typical range), so dosage of Clomid was increased to 3x a week and daily ½ tube of 1% Testim -
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)?
Bloodwork ordered by Dr. Irwin Goldstein (San Diego Sexual Medicine at Alvarado Hospital) prior to meeting with him in November of 2009:
DHT 17
T 335
TSH 1.41
E2 30
FSH 3.0
LH 3.9
PROLACTIN 5.2
SHBG 13
After 6 weeks of Clomid (2x a week, 50mg), my Testosterone was in the 600 range, DHT was doubled. Dr. G. said DHT was still very low and that we needed to get T to 1000. He upped my dosage of Clomid to 3x a week and added ½ tube of topical Testim 1% (50mg) gel (Testosterone).
Quick Update (full story at end): after just a few weeks of Clomid, I felt much more upbeat & energetic. 2 months later, I’m far more motivated to workout, run, and do simple things like empty the dishwasher which used to feel like a monumental task. I realized just how damn exhausted and out of it I’d been in the last couple of years pre-treatment. I’ve always been horny: pre, during and post fin. I’ve “just” suffered E.D., lack of energy/depression/melancholy. Meaning, even though erections are difficult to initiate, I’ve never stopped wanting sex or masturbating. Just avoiding situations due to performance anxiety, etc. Nevertheless, 2 months later, I’m starting to feel a little hornier, I’m masturbating slightly more. Also getting regular morning erections. Still not recovered, by any means, but this is what I’ve noticed and I’m trying to keep track as I notice changes.
- Anything not listed in the above questions you’d like to share about your experience with Finasteride?
Perhaps I have not read enough posts yet (I’ve been jumping around on different sections trying to make sense of this cursed circumstance and absorb as much as possible), but what I’ve generally observed is that most people here suffer from a lack of libido/desire/lust along with E.D. Is there a strong differentiation in post-fin sufferers between no libido vs. libido with inability to perform? I can’t just be with a girl, have a fantasy, or look at porn and get aroused like I used to, but if I jerk it, I’ll eventually get hard (takes longer than it used to), and I can maintain the erection. In other words, I masturbate a lot. Do you guys have zero to little desire to?
- Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
I was 21, started losing my hair, started freaking out, getting teased by friends, etc., so I saw the dermatologist and started taking Proscar 1.25mg daily along with Rogaine. Results were dramatic, people noticed, seemed to work pretty damn well, I was happy. Stopped the Rogaine after about a year because it just was a pain in the ass and it crusted the crown of my head.
I’ve always been super horny, very easily aroused, and just generally over-sexed. A girlfriend’s mere scent or tap on the shoulder would get me sprung in college. I could get erections easily, I could remain hard even after ejaculating, I could get restarted without too much effort. I could go and go and go. I could get wasted drunk and not suffer “whiskeydick.” It was a personal source of pride, it very much defined a large part of me. When I was first prescribed fin and read that a small percentage of fin users experienced sexual side effects, I thought “well that definitely wouldn’t be me.”
After a couple of years on fin, in a post-college relationship, I remember thinking “I used to be a little bigger, fuller down there.” I was still horny, still had a lot of sex, no real problem getting aroused. But I felt a little off. Like…just a few years ago, it was just a little easier to get an erection. Somewhere around this time I remember also noticing in passing that I didn’t get public erections as often. I used to come out of the water at the beach sporting an embarrassing hard-on. I thought back to the side effect I had read, and decided to stop taking fin. Within two weeks, my hair was noticeably thinner and more brittle. All this time, fin had definitely slowed the rate of balding, but I was still losing hair. But the weakness in hair without Fin was noticeable. My girlfriend asked what was going on, I told her, and she said “get back on that pill.” I did. Stupidest fucking thing I ever did. I ignored the obvious. I pushed aside the voice in the back of my head that was catching on to slight symptoms.
Life went on. Girlfriends, flings, breakups some hair loss, some missed Fin dosages, one night stands, etc. Overall, no real issues. Until some time in 2007. All of a sudden, my erectile performance embarked on a rollercoaster ride until I couldn’t deny there was something going on and finally brought the issue up with my doctor.
I’m sure most all of you have been in some sort of variation of this. You’re with a girl, and stuff just doesn’t work. You think it’s in your head. You think you’re nervous, or it’s a fluke. It happens again. The girl blames you, you feel horrible. You’re ashamed to be with the girl, the situation flames out. You try again. Maybe it works this time, maybe it doesn’t. Then it happens again. It’s all in my head, I just need to have a few drinks and relax. And on and on.
But this wasn’t the flukish case of nerves. The type of situation where you just relax, focus on kissing a girl, and go on autopilot and be ok. I couldn’t figure out what the hell was going on!! I’d be fine one day with an ex-girlfriend, then I’d have a one night stand and have difficulty in the morning. Then I’d be ok. Then I’d have complete failure. I’d have to jerk myself and get hard and enter a girl and then maintain that way. I first thought it must be psychological, since I was playing the field but still had feelings for an ex. Thought it might be desensitization to porn. Stress, etc, etc. But it got to a point where I flatlined, and it just wasn’t working.
I saw my doctor who told me to stop Fin and gave me come Cialis and told me to have fun. I avenged my previous horrid performance with a girl I was seeing. I felt alive, I felt like my old self. We went out drinking, we’d fuck, fall asleep, fuck again. Doctor said that Fin would clear out of my system in a couple of weeks, and that Cialis would help give me some confidence.
Well, without Cialis, I was back to square one. Went back to the doc. Blood tests. “You’re testosterone is normal.” More Cialis. Then Xanax. Nothing. WTF?? Went to see a urologist. “Your testosterone is normal.” Ruled out prostate cancer, diabetes and other things. But he acknowledged that there was a lack of admission in the medical community that Fin had serious and permanent sexual side effects. He thought I might have an excess of adrenalin, gave me Doxazosin for a month, nothing. All he could tell me is that Fin was probably the cause and that there’s nothing he could do but prescribe Cialis.
Next stop, finding a damn specialist. I wasn’t going to accept that there was no treatment. Started googling around and saw that there were a lot of post-Fin sufferers going through what I was going through. Finally, through asking around, I was referred to a urologist who ran a center specifically designed to diagnose biological causes of E.D. and eliminate psychological causes (which, contrary to my misconception, account for the minority of cases).
I visited Dr. Irwin Goldstein at San Diego Sexual Medicine at Alvarado Hospital (www.sandiegosexualmedicine.com) in November of 2009. (Note: this is not a plug. My experience has been positive thus far, but I’m not recovered yet. Just giving you the play by play so that you can get in touch with a specialist in E.D. if this story is similar to yours, and if you have not eliminated non-hormonal causers).
I started with a free 15 minute phone consultation where Dr. G. asked me to explain what was going on, and in particular heavily inquired about any childhood trauma to the penis I may have incurred. I then had bloodwork performed prior to my visit.
The office visit in and of itself is $400. There are a series of tests you can opt to take (which can put you out 2k total—but totally worth my relative peace of mind), to step by step probe and narrow down the cause of your E.D. and determine what a course of treatment would be in your first visit. I ended up having my penis pumped up with fluids, needles stuck in my penis, blood pressure/flow measured, Doppler ultrasound, etc, etc. I’m going to skip going into detail about each test for the purposes of this initial post; the bottom line is that it doesn’t hurt (just some needle shots), and you come out understanding whether your issue is initiating, filling, or storing (maintaining) an erection. If you have scar tissue or arterial blockage, etc. The penis is observed in an erect state and monitored for heat/cold sensitivity, etc, etc. You can see the blood flow on a screen. And the whole time, Dr. G. is cracking jokes, he’s very obviously sexually liberal and open, the setting is surprisingly comforting and accepting.
But let me back up. Before I got to these tests, I sat down with Dr. G. and he explained the basic process of getting an erection, went over my history, asked me to demonstrate on a model the extent of my erection capability, etc. And he relayed that my Testosterone wasn’t “normal” as previous doctors had claimed. I was 31 years old, 300 level is not normal!!! And of course he tested for DHT in his panel. That wasn’t normal. AND THAT WAS NOT TESTED BY PREVIOUS DOCTORS!!! Again, here were my results at the time:
DHT 17
T 335
TSH 1.41
E2 30
FSH 3.0
LH 3.9
PROLACTIN 5.2
SHBG 13
Dr. G. told me that my T and DHT were extremely low, particularly DHT. He said that DHT was below the lowest number on the range of “normal.” Clearly, the anti-DHT medication I was on for 9 years had done something. “How do you feel?” Dr. G. asked. I felt exhausted. I didn’t realize, until that visit and subsequent research how much Fin screws with your system, how low T makes you feel exhausted and depressed, and half a man.
On to the physical penis tests. Turns out, I had a minor arterial blockage. I was able to achieve an erection while pumped with fluids watching porn and hooked up to probes and such, and I was able to maintain it well. The tests showed a blockage (usually due to childhood trauma: bike accident, getting kicked, falling on a fence) which interferes with ability to “initiate” and “fill” an erection. But I didn’t suffer from, say, “leakage” issues, or scar tissue, etc.
So now what?
Well, much like a bypass procedure for the heart, as a young, healthy man with only minor blockage, I could get an arteriogram (google it) and further “x-ray” the situation and decide to have a re-vascularization surgery where another path is created to aid blood flow. This is supposed to have excellent success. After 6 weeks of laying low, recovering.
But you don’t do that until you have stable hormone values. Dr. G. said it was possible and optimal to treat the hormonal deficiencies and not need surgery.
And so now, as mentioned under the previous “bloodwork” survey question, I’m 2 months into my treatment, taking Clomid 3 times a week and using ½ tube of Testim 1% (50mg).
My initial dosage of Clomid was upped, and Testim added to the mix after bloodwork performed at 6 weeks indicated double the T and DHT, but still not enough DHT.
I had begun to feel better after a few weeks. And I realized just how much of a funk I’d been in the last few years. I’ve always been energetic, athletic, optimistic, fun-loving. And I wore a happy face throughout this ordeal. But I was sooo damn drained, so mentally exhausted, so easily panicked and stressed. I couldn’t focus on one thing, past my normal, untreated ADD. My mind raced about how get things done, my confidence and zest for life had evaporated. I would go out drinking, but felt myself progressing deeper into a funk due to sexual incompetence, stress, and lack of energy or desire to do things. I needed energy drinks to keep up. I look back and it’s all so clear now. I couldn’t get up off the couch, I couldn’t be bothered to do simple things like check the mail.
Fortunately, I now feel a lot better, just 2 months into treatment. I’ve been working out, eating healthy, just filled with more desire to get up and about. And I’m further motivated to eat well and exercise since “what’s good for the heart is good for the penis” as Dr. G. says.
I am still not recovered, however. I do now have regular morning erections (60-85% full) with or without taking the 5mg nightly Cialis (helps circulation—very important to not atrophy down there) which I’m hoping is a good sign, but I still can’t just get an erection on demand. I take 20mg of Cialis when I think I’m going to get lucky. I typically need to drink quite a bit to lose my nerve and not focus on my penis and let the Cialis do it’s thing. But this cycle of behavior has taken its toll on me. If I can’t pursue a relationship or have sober, weekday sex, what’s the point? I’ve just decided to stop drinking alcohol for a while. Let my body strengthen even more, allow the medication to metabolize correctly, and hopefully function will be restored.
Part of me is encouraged and so grateful that this forum exists and that people are sharing stories and increasing awareness and the potential for cut and dry “cures.” Part of me is discouraged by the insane complexity of the chemistry of the problem, and by reading that many have taken similar drugs and not been cured. At this point, I’m still trying to be positive and healthy, and arm myself with as much knowledge as possible.
I 100% believe that Fin has f’d me up…but I still don’t know how much the blockage issue is contributing, or if that was possibly caused by the Fin.
My main question is if people generally have a lack of desire, or if just as many people have desire but inability as I do.
I also would like to know if anyone here has used/is regularly using ketoconazole (brand name: Nizoral, topical ointment for dermatitis) or cortisone creams? I found out that when ingested, this acts as an anti-erection medication! Applied topically, it is supposedly not absorbed into the bloodstream. But why take the risk? I found that taking a Biotin supplement (5,000mcg/day) is a natural, side-effect free treatment for dermatitis (along with light Selsun Blue shampoo/selenium sulfide topical/face usage). Works much better too! (I’m highly suspicious of all meds now!!!)
Thanks for reading this book, please feel free to communicate with me more about my treatment, any advice you might have, any similarity with my case, or anything at all.
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