Stomper1 my nightmare with PFS

  1. Where are you from (country)? USA

  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?) internet search

  3. What is your current age, height, weight? 34, 6’3", 212lbs

  4. Do you excercise regularly? If so, what type of excercise? yes, dedicated bodybuilder since I was 18

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? I eat high protein/carbohydrates and moderate fats.

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

  7. For how long did you take Finasteride (weeks/months/years)? 2.5 years

  8. How old were you, and WHEN (date) did you start Finasteride? 32 began in Aug 2011

  9. How old were you when you quit, and WHEN (date) did you quit? 34 in April 2014

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

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

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1.25mg/day

  13. How long into your use of Finasteride did you notice the onset of side effects? When I think about it now it was almost immediately, but they didn’t destroy my life until after 2 years of use

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation? while on I noticed my penis shrunk, numbness and slight loss of libido. and extrememly embarassing ED. this led me to quit in April. since quiting symptoms have become 10X worse. complete ED, complete loss of libido, complete loss for desire of life, depression, panick attacks in the middle of the night, brain fog, dry eyes and achy body and weakness. however, my overall testosterone remains fairly high for a 35 year old. 3 months after quitting fin it was 937. however, free test was only 10.1

Put an X beside all that apply:

Sexual
[x ] Loss of Libido / Sex Drive
[ x] Erectile Dysfunction
[x ] Complete Impotence
[x ] 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
[ x] Emotional Blunting / Emotionally Flat
[ x] Difficulty Focusing / Concentrating
[x ] Confusion
[ x] Memory Loss / Forgetfullness
[ x] Stumbling over Words / Losing Train of Thought
[x ] Slurring of Speech
[x ] Lack of Motivation / Feeling Passive / Complacency
[x ] Extreme Anxiety / Panic Attacks
[x ] Severe Depression / Melancholy
[x ] Suicidal Thoughts

Physical
[x ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[x ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ x] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ x] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[x ] Joint Pain
[ x] 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? The big problem is is that I was already the epitomy of health. muscle and single digit body fat. My diet has been great and very clean since I was 18. my bloodwork is always good. however, after 4 months I finally convinced a urologist to check my estrogen as I susbected it was high. I’m very in tune with my body. sure enough it was high but Dr said he wasn’t comfortable prescribing me anything for it as he felt it will fall into range with time. funny, they have all been "comfotable prescibing me endless cialis and viagra… both of wich only have worked occassionally and the quality of erection is still horrible with these meds. I just don’t have a sex drive at all. So thuse far I have just done what I always have done; heavy weight training, mobility training/yoga, healthy high protein diet and supplements. and cialis(which I hate having to use). I used to be the horniest person alive I thought. this has been awful

  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)? above range estrogen

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride? no

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
    I’m a vain SOB. I loved cutting down woman in the bedroom like trees. I was paranoid about hairloss at 32 and got on fin. for the first 2 years I was still horny as ever. thinking about sex CONSTANTLY and masterbating at work up to 3 times a day was not unusual. then in December of last year I was with a new girl and I couldn’t get it up. never had this happened to me before. I was devistated. went to the doctors the next day. he asked me what medication I was on. ask soon as I said finasteride. he told me I need to stop taking that and that my receptors were clogged but that I would be fine in a few weeks. I didn’t really even believe him because I didn’t think it could be the drug cause I had been on it for two years with no problem. I cut back the dose to 1.25 everyother day. over the next 8-10 weeks libido got worse and worse. that’s when I did my own research and to my horrow stumbled upon the truth about finasteride and what it does. I had no idea. I quit immediatley. went back to the doctor and he said "yes, I did some more looking into it after you were here last time and it might take more like 6 months for your boy to heal. over the last 4 months I have been to 2 urologists, and 1 endo. I have had about three blood tests. Overall testosterone always ranging between 790’sand 930’s…in fact I have elevated my natural testosterone since being off but my symptoms have only gotten worse. I continue to eat, and train like I always have and have looked very good but I never feel normal or even close to better, and then when I have a crash(like a week of panic attacks with , racing heart, trembling body and horrible joint muscle pain, I just get so depressed and wonder if I will ever be my old self again. I am tired of waiting for my body to “heal itself” my life is going by me while I am simply existing in a zombie state…but not truly living. I am wanting to fix this. I will tell you all, I doubt their is anyone on this site in better shape than me, who has consistantly, day in and day out eaten and lived the “natural bodybuilder” lifestyle as successfully as I have. of course I know there are probably others on here just like me, but my point is, this has done zilch to help me recover. I am getting worse and I do believe that only time will heal of is we are ever to be healed. however, like I said before, I don’t want to waste anymore time dwelling on this bullshit. I want to try to feel like ME again. I will do TRT, anti estrogens whatever it takes.

Your T looks ok. Maybe start with an AI and see.

Have you seen a PFS doctor yet?

No, I have had many bloods done and seen 2 urologists and an endo as well as my PCP and none know jack shit. it was near impossible to get them to finally agree to check my estrodiol. They still will not check my DHT level. one endo said to his nurse “can DHT levels even be checked?” it’s very very frustrating. They tell me that with my T levels being so good that this is psychological or aging. actually my primary care doctor has been the most help of all. actually aknowledging from the start that it was the fin that was giving me sexual disfunction. However, his solution as that only time will fix it and he thinks that because my T levels are good my estrogen should not me messed with so no, he wont write me a RX for SERM or an AI. I believe that this is going to be a big part of the solution for me. My endo confirmed I was getting GYnocamastia after chicking the tissue in my nipple, and bloods showed my Estrdiol was above range…still though she didn’t want to write an RX for an AI. I believe we are no longer making sufficiant DHT…therefore, our test is just be converted to estrogen. I have knowticed that for me personally, that as my total test levels have risen from 765 in January - 939 in august my sexual side have actually gotten worse. I think this is because more conversion of test to estrogen. I am very interested in first trying an AI. However, if I don’t have adequit DHT in my system I doubt simply lowering my estrogen will fix my problem completely. I will probably need DHT. Thoughts?
I would love to trade thought over the phone with a qualified doctor who actually believes PFS in a true condition. is there a doctor willing to talk with us victims that any of you could point me to?

Please will you consider taking part in the current studies if you are eligible. Baylor College needs study participants. Not sure if you are eligible due to your circumstances, but please contact them.

Dr. Irwin Goldstein sandiegosexualmedicine.com/

You can order just about any test you want with no doctor. Just go to www.walkinlab.com. They have dht listed. This is way cheaper. They doctors are useless. There isn’t a single person here that has fully recovered by doctor assistance. You can order e2 also. Very easy. Good luck.

Thanks for the helpful responses everyone. It’s scary that no one has recovered with Dr’s assistance. We are the pioneers of this I guess. I live in VT so I called and left a message for the study in Mass(Baylor)…but I have heard back

You have not heard back?

Yes no one called me back

No, nobody has returned my call. I have called 2 x.