New Member / Victim

Member Stories
#1

Hi All:

I’ve been reading this forum for a couple months, but I haven’t had time to post. I believe that I’m yet another victim of this terrible drug. Like many of you, this condition is making me severely depressed and making me question life itself. I’ve been hoping that the problem would resolve itself, but after five months, it has not. Reading this site is frightening me even more, because it appears that very few of you (or, I should say, us) are recovering. How can we live like this?

In short: I started Propecia (the normal dose, one pill a night) in April. In hindsight, it was an idiotic decision, since I have a full head of hair. But it was thinning a bit, and I decided to be aggressive–and here I am. One morning in early July, I noticed that my penis appeared smaller and lifeless. I masturbated, but my erection wasn’t full; the erection was around 50 - 60%. I tried again that night, the next morning, and so on every day for weeks, for months. Five months later, nothing has changed. Same result each time: a 50 - 60% erection.

In addition to the weak erections, I stopped having nocturnal, morning, and spontaneous erections. However, my libido is fine (I believe), I am able to orgasm and ejaculate enjoyably, and I have no cognitive side effects (e.g., brain fog).

Another important wrinkle to my story: I was depressed about something (a professional disappointment) before I started Propecia. It’s quite possible that the depression and Propecia both contributed to my sexual dysfunction; I can’t rule out the role that my mind is playing in this struggle. Perversely, though, the ED is making me even more depressed than I was before, so I’m unable to isolate the Propecia-factor in my self-diagnosis. I’m of course hoping that the underlying depression, and not persistent PFS, is the culprit.

Regarding treatment: At the direction of a doctor who is listed on this site, I’ve started taking 1/4 of a Viagra pill daily. That remedy helps with the morning and spontaneous erections, but the erection itself remains weak. I’ve also started taking Vitamin D. I do not want to experiment with Testosterone or other hormones yet, because it appears that most members of this site have not had much success with hormonal therapy, and there are risks. Understandably, I’m now a risk averse person. Please correct me if you disagree with my assessment of hormonal therapy.

Overall, please advise me on what you would do if you were in my situation. Because this is such a medical mystery, you all are the most knowledgeable people in the world about this crap. You are the world experts on PFS, like it or not. I would value your advice hundreds of times more than any urologist. (I’ve seen three who claimed that I was crazy to think Propecia could be a factor.)

My bloodwork is pasted below. The blood was drawn in October (three months after onset of symptoms). I’ve also filled out the questionnaire, which follows the bloodwork.

Thanks for reading. I look forward to your guidance–and, if nothing else, your emotional support. We’re in this together.

Bloodwork

LH: 3.3 (1.5 - 9.3 miu/ml)
FSH: 1.5 (1.6 - 8.0 miu/ml)
Prolactin: 8.4 (2.0 - 18.0 ng/ml)
Estradiol: 52 (~ 54 pg/ml)
Vitamin D: 22 (30 - 100 ng/ml)
3A Androstanediol-G: 250 L (260 - 1500 L)
DHT: 39 (25 - 75 ng/dl)
T Total: 858 (250 - 1100 ng/dl)
T Free: 108.2 (46 - 224 pg/ml)
T Bioavailable: 213 (110 - 575 ng/dl)

Questionnaire

  1. How did you find this forum? Google search.

  2. What is your current age, height, weight? Between 25 and 29. 5’9, 160.

  3. Do you excercise regularly? If so, what type of excercise? Regular weightlifting and cardio.

  4. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? Normal, healthy.

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

  6. For how long did you take Finasteride (weeks/months/years)? 4 months.

  7. How old were you when you started Finasteride? Between 25 and 29.

  8. How old were you when you quit? Same.

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

  10. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic? Prpecia

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

  12. How long into your use of Finasteride did you notice the onset of side effects? Four months.

  13. 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
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

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

Physical
[X ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] 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
[ ] Increased hair loss
[ ] 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? Daily use of Viagra.

  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)?

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?

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

#2

Vit D low out of range just like all the rest of us. 3 Adiol G is in range low, again same as most. Odd your Testosterone levels are so high but your LH and FSH and so low. Would be interested to see how you did on clomid and one of the estrogen blockers for a start.

Yes, hormone therapy is not to be entered into lightly. However under the care of one of the PFS docs could offer some relief of your symptoms. In my opinion, I believe hormone therapy is more treating the side effects then getting to the root of the problem which is an epigenetic issue, as most of the PFS docs now believe.

#3

What about taking Testosterone? My BioT is low, and even though it’s within range, it appears that many people on this site have problems even though their labs are within range. Also, my total T is relatively high while my DHT is relatively low.

Has anyone on the site found taking T helpful? If so, have those who have taken T experienced side effects?

#4

lawyer23,

welcome to the forum. I am sorry you had to end up here, with all of us.

I can’t help but wonder if your user ID has any significance. Are you an attorney? If you are, we could certainly use someone with legal contacts to help get us closer to a class action in the US.

We are learning some things about the damage the drug has caused, but we are far from understanding the extent of the damage it has caused. It has likely caused a diruption in the HPTA axis within our bodies.

#5

Hey - alot of your results are close to mine. Your Estradiol is way too high; males should be 13-54 range but best is around 25. Are you taking anything?

#6

@ Scaredtodeath: I haven’t taken anything yet, besides occasional Viagra/Cialis to keep the blood moving down there. I decided to give my body a few more months to heal itself naturally before I take anything else. If that doesn’t work, then I’ll start taking a more aggressive approach.

By the way, although I had “hoped” that my symptoms were depression-related, that’s not the case. The circumstance that was depressing me before is no longer a problem. But, the symptoms are still here, and they’re not getting any better.

#7

Not sure why you would use Viagra over Cialis - Cialis is supposed to stay in your system for 36 hours; that’s why many people use the low dose Cialis for ED (Viagara is four hours I believe.

For me Cialis does not work for ED but does help some with shrinkage. Levitra works best.

I would watch your E2 numbers…

#8

Scared is correct. I actually thought the same when I saw this thread. I believe low dose cialis is the best for us and our symptoms - ie “shrinkage”. Havn’t tried Letriva yet.

So, speaking of - does anyone know a good reliable source of cialis or levitra?

#9

Well I don’t really have a source, but my Doctor just gave me a script for cialis two weeks ago and told me 30 pills were free. I also saw the same advertisement on tv or online. So, basically if you go to your doctor and ask you should be able to get 1 month free to see how well it works for you.

Does anyone know if it helps improve sensativity to the area? Personally when it comes to sex, that’s my biggest compaint. Well that and completing the task feels like yard work.

#10

My healthcare doesnt cover it. So, its $160 for 1 month. Since it improves bloodflow you’d guess it should have some benefit in improving sensitivity. Probably not much though. But, be thankful you can have sex.

#11

Thanks for all the input. For those taking Viagra/Cialis/Levitra, how much are you taking? Does the dosage amount make a difference for you? Also, does the frequency (every day, once per week) and duration make a difference for you?

#12

For the first week Cialis seemed to help a bit. I was taking 2.5 mg. Now, I can take 25 mg and it really makes not difference. But, I think its probably a good idea to use it to get blood flow going.

#13
#14

I wasn’t able to determine how long it’s been since you quit the propecia, but if you quit more than 3 months ago and you still have symptoms you probably have the post finasteride syndrome and the symptoms are here to stay for a while. I hate being the bearer of bad news. On the positive side, at least you don’t have some of the more severe symptoms. You’re bloodwork is the same story as ours, just with a different variation.

One thing that did get the attention of many people here was your ID. If you are a lawyer, maybe you can help us see to it that “justice is done”, for lack of a better term.

#15

I graduated from Harvard / Yale / Stanford Law School (won’t say which one publicly) last May. I will be admitted to the bar soon (again, won’t say which one publicly). I indeed plan on taking legal action.

#16

lawyer23
your FSH is out of range low. I wish you had your sperms checked.