1 year into PFS, my story and a couple of questions

Hi all, I posted this in SolvePFS because it seems more active these days, but I do see people still posting recently here, so I figure I may as well duplicate. I am putting my story here to accompany future posts. I have been lurking for some months, but decided to finally become active.

  1. Where are you from (country)?
    Scotland, but located in Belgium

  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 (sickeningly, I looked over it BEFORE starting propecia but went ahead anyway)

  3. What is your current age, height, weight?
    36, 183cm, 84 kg

  4. Do you excercise regularly? If so, what type of excercise?
    Yes, but only started again very recently after almost a year off. HIIT on the bike + weights (1 muscle area per day, usually try to lift 5 times per week)

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    Mixed but healthy, lots of fresh fruit and veg, try to only eat meat once per day (usually chicken or fish), but I do eat a good amount of carbs (mainly pasta and rice). Now I am lactose intolerant / dairy allergic. Have recently cut down significantly on processed sugar and caffeine.

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

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

  8. How old were you, and WHEN (date) did you start Finasteride?
    34

  9. How old were you when you quit, and WHEN (date) did you quit?
    35

  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?
    Propecia

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

  13. How long into your use of Finasteride did you notice the onset of side effects?
    I can’t actually remember, but think it was a couple of weeks, couldn’t get a full boner

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation?

Put an X beside all that apply:

Key
X = had while on the drug and continue to have
X+= had more mildly before propecia but got worse with it
O = did have during PFS but not recently
R = developed recently
XR = had while on the drug, but recently got worse
? = not sure (haven’t tested, or haven’t witnessed)

Sexual
[XR] Loss of Libido / Sex Drive
[X] Erectile Dysfunction
[ ] Complete Impotence
[X] Loss of Morning Erections
[X] Loss of Spontaneous Erections
[?] Loss of Nocturnal Erections
[O] Watery Ejaculate (water and clumpy, i.e. clumps of semen in water ejaculate)
[XR] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[?] Reduced Sperm Count / Motility
[X] Less pleasurable orgasms

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

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

Misc
[ ] Prostate pain
[R] Persistent Fatigue / Exhaustion
[X] Stomach Pains / Digestion Problems
[O] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[O] Frequent urination
[ ] Lowered body temperature
[XR] increased sweating, night sweats
[X+] Insomnia
[ ] Other (please explain)
Beyond the sexual sides I noticed that I began growing MORE hair on my chest. I noticed this because I have always been relatively hairless, with just hair around my nipples, but odd hairs have been sprouting on my chest. I have also experienced hot flushes in recent months, to the point that if I walk into a building before taking my coat off I get very hot very quickly. Along with the recent increase in fatigue, lack of concentration, inability to think clearly, I have also developed INTENSE under arm odor, to the point that I now wash my armpits with white vinegar every morning and evening before showering.

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    Nothing yet, I actually didn’t fully appreciate the extent of my PFS until it got worse recently, blaming physical and mental sides on other things. Now that these have all worsened along with the body odor, I am coming to understand that I had many symptoms much more mildly in the past.

  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 had blood tests done back home before propecia, but don’t have the results to hand (I had them done to make sure there was no underlying medical reason for my hairloss). I had a blood test taken in Feb (again, don’t have results to hand) and will have another done this week. Once I have the results of all three, I will post them for comparison below.

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?
    Not that I can think of 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 the story starts almost a decade ago when my friend’s hair started falling out and he ordered this magic generic pill from china that made it grow back. I mate a note in my mind that should my hair begin to fall I would get in touch with him and get my hands on it. Fast forward 7 years and that is what I did. “About 2% of guys get some pretty heavy side effects”, he said. “But they go away if you stop taking it”. To be clear, I do not blame him in any way, he is only parroting what many of our doctors have told us. So I figured what is there to lose, if my boner suffers, I will just stop. The sickening thing when I look back is, I did actually do some research into this and found my way to PH, but looked through a few posts and thought they were just a super minority of tragic cases that I had no need to really worry about given that I am a healthy, active person. From what I saw it was guys who had taken it for years, or persisted in taking it despite serious sides. I never came away with an appreciation of all these mental and physical sides, just the sexual ones, which I believed 100% could only be temporary if I took this drug for a short time. How horribly wrong I was. It is only once PFS hits you that the “it won’t happen to me” becomes “what the f is happening to me???” and you start to delve deeper, see stories of people being ruined by just one pill, or only getting sides after they stop.

Anyway, so after I quit I went through a couple of months of no change, then suddenly my boners became rock hard and I thought I had not only recovered, but had actually rebounded so hard that I was even more virile than before. Then the sides came back. However, they remained largely sexual and physical and mental sides that I now believe are PFS related were so mild that I attributed them to other things. It is only now that I have recently started experiencing those sides more that I come to realise the little concentration lapses, stuttered words, slight confusion, etc, were mild PFS, which is now worse.

So now I am at the point where I fully accept I have PFS (I have lived in denial for some time because I have seen guys on PH telling other posters thet “don’t have” PFS if their sides are not severe, or if they think they recovered). Now there have been some changes going on. First of all, I developed severe lactose intollerance / dairy allergy (it would go straight through me and I would develop dry red skin on my face). This seems to have actually calmed down as recently I returned to the gym and began drinking the whey protein I have had under my sink for months with no major bowel movements / skin issues. However, other sides have got worse recently. Persistent fatigue, mental numbness, a cloud of depression (thought I feel that this is largely due to the hopelessness of PFS, given that it lifts every time I read a recovery story that gives me cause for hope). A month ago I cried while reading a wikipedia page (it was about the murder of a child, so pretty upsetting, but I would not normally by drawn to tears by reading something like that) and I have been getting some pretty intense hot flushes. I have been going to the gym again recently and was taking creatine and BCAA before and after and whey after. I realise from looking around that maybe these are not good for me to be taking, so any advice is appreciated.

Two other things that I would appreciate comments on:

  1. Is it possible that the crash I think I have experienced since the turn of the year could be due to overdoing it at new year (compared to the others in attendance at the party, I was very restrained, but I was offered MDMA and K while very drunk and took small amounts.

  2. Given the recent symptoms (crying, hot flushes) is it likely I have too much estrogen? I have found myself coming out of the gym feeling on top of the world, but a couple of hours later I just want to crawl into bed and let the world go by (and I have done so).

Finally, I had blood tests done in Feb, but my doc refused to test for estrogen because she believes it is “mostly in my head”. I will have new tests done on Thursday, including estrogen. If there is anything else I should specifically request, I would appreciate advice.

If I think of anything else relevant, I will post it below. If you got this far, thanks for reading my story and all comments are appreciated.

You can do stool tests and metals testing, PFS can be caused or made much worse by hidden problems like parasitic infection or too much mercury. As for reducing estrogen you’ll feel your body swinging in the right direction if you stay disciplined for 3 or 4 days. So avoid eating out especially fast food it’s full of estrogen, fast as much as possible, eat foods like broccoli and wake up before dawn to do some weight lifting.

Ask other members what they think of aromatase inhibitors. It might be smart to experiment with those or it might be dangerous.

Give a damn on what your doc thinks. I know those ignorant docs…
Test for testo, free testo, sghb, östrogen, even Progesteron, dht.
After exercising testo goes down for a while and returns.
Question is if your östro goes then high as well due to aromatase.
Aromatase inhib.can be very risky! Ignite gave you the important info.
Brocco is perfect. Intermittend fasting and good refeeding is great!