Indian PFS Sufferer, Needs Help

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (India)

How did you find this forum (Google search – Looking for recovery stories)

What is your current age, height, weight? 27, 6ft, 57 kg

What specific drug did you use (finasteride)

What dose did you take ( 1 mg in other 3 days, suppose that if i take a pill of 1 mg on Monday then next pill i take on thursday.)?

What condition was being treated with the drug? Hair Loss

For how long did you take the drug (weeks/months/years)? 1week

Date when you started the drug? October 2021

Date when you quit the drug? October 2021

Age when you quit? 25

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

How long into your usage did you notice the onset of side effects? 1 week

What side effects did you experience that have yet to resolve since discontinuation?
ED, PE, watery ejaculate, loss of libido, always tired, forgtfulness/less focused, no urine urgency or i can pause my urine, muscle twitching, Sleep problems, gut problems, tinnitus, weight loss, forgetfulness and confusion and majority of side effects.

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[X] 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
[X] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[X] Confusion
[X] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[X] 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). Shrinkage and girth marks on glans
[X] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[X] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[X] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[X] Persistent Fatigue / Exhaustion
[X] Stomach Pains / Digestion Problems
[X] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[X] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[X] Other (please explain). There are several others which i have explained in my story.

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Haven’t took any treatment yet, just only took medicines for lower vitamin B12.

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?
I had tests earlier, where i remember my testosterone was in 700-800 range, normal vitamin B12 and vitamin D.

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

I never thought of writing my story but if my story will help someone from not taking finasteride it would be great.I took fin even after knowing the side effects cause i read about nocebo effect adn thought that i won’t be the one to get effected as percentage is rare. So here I am, became the part of those rare people.

I took first dose of finasteride back in october-2021, as my doctor suggested 1mg dose on alternate days. So basically i took around 4-5 pills in total. I have read the side effects on internet before taking the pill, i didn’t know about this forum earlier otherwise i shouldn’t had taken the pill. All of my side effects i got gradually within 1-2 year of time, i didn’t have all of them just after stopping the pill.

So when i took the very first pill, i had nightfall while sleeping. Also the the next day when i maturbated, i ejaculated quickly. So i stopped taking pill for 2 weeks, also during this gap i again masturbated to check that if i was still having quick ejaculation or not and found that everything was back to normal. So i did a bit more research on the internet and found that there was very rare details of people had premature ejaculation problem from finasteride, so i thought that maybe I’m thinking too much about it. Therefore i started taking fin again after two weeks of gap. The same happens when i took my second pill, i had nightfall but i wasn’t bothered much at that time. So after someday when i was masturbating again i ejaculated really quick( within 3-4 seconds). Till the time i only had taken about 2-3 pills, so i ignored and kept taking the pill. Again after 2-3 days when i masturbated i ejaculated very quickly. So this time i got a bit tense and stopped taking the pill, till now i had taken around 4-5 pills within 9-10 days of duration. Also two things which i noticed that when i was urinating i have to push myself to empty my bladder, like earlier when i just feel the urine pressure the bladder gets empties automatically after urinating. But now i have to push my glutes/pelvic muscles to empty the bladder, as i can feel it’s not getting emptied automatically in one go. Second thing which i noticed was that now i was able to stop my urine in between as many time as i want, like when we urinate we cannot pause/stop our urine until we empty our bladder, but i was able to stop even when i was having high urine pressure.
So i scrolled on the internet and found that the side effects will go after 15 days to 1 month of time. So i waited for next 2 months but nothing changed. I didn’t got any new side effects but the present one wasn’t getting better. The premature ejaculation was still persistent and i also wasn’t feeling any urine pressure when i wake up and sometime when i feel the pressure, i have to push those pelvic muscles to empty the bladder and still i can pause my urine as many times.

After 2 months i consulted an endocrinologist, he suggested me that finasteride show side effects in persons who are taking 10mg dose for prostate problems and told me that i’m just thinking too much about it. He told me to have some tests and found that i was having urine infection. I also told him that i was having very less morning erections. So he gave me some medicines for infection and also suggested me tadalafils(5mg) for my urine pressure problem for 1 month. tadalafils helps me in feeling urine pressure in morning and better morning erections well. So after taking tadalafils for 20 days i stopped it and again i was having the same problems which i had earlier. So i consulted some more doctors but none of them having a clue of what I’m talking about. So i stopped bothering about it. Till this time i also find out about propecia help forum and read probable side effects.

So 6-7 months passed nothing changed but now i had obsereved that i was having no sexual desire and that inner rage after seeing hot girls is lost. Even seeing a nude girl wasn’t giving me those Goosebump feeling which i had earlier. Those morning erection, nocturnal erections and random erections are completely lost as well. My ejaculate became watery, my bodyweight is slowly decreasing as well. Also my sleep wasn’t feeling that much relaxing but i was able to sleep 5-6 hours continuously. I thought everything will get better by itself just like it happen in the very beginning.

1 year passed now i started having sleep issues and gut problems like very bad digestion and started feeling just full after eating small meals because earlier i had a great appetite. Like if we eat too much we feel our tummy to be full. But i wasn’t feeling full in my tummy, i was having that feeling of fullness just above the tummy and we can say below my lungs like somewhere in between and that seems strange. Also i have too much growling sound from my gut. Just after having my meal the growling sound increase and persist for like 2-3 hours. But day by day the growling sound became persistent and it gets increase when i eat something and even when i drink water. Bloating and hard poops became normal and also i had push extra while pooing to empty my bowel (seems like pelvic muscle problem as well). I can’t empty my bowel in one go as well, even when i push extra and i know my bowel doesn’t get emptied fully I’m unable to do it.
So i consulted a gastroenterologist and he suggested me to have endoscopy and colonoscopy. So i had both them done but found nothing but gut inflammation, therefore i took some pills to reduce inflammations for 2 months and stopped taking medicine afterwards as suggested by doctor. So for 3-4 months i feel normal in my gut issues cause my intestine was emptied because of colonoscopy, but all other symptoms were same.

So 2-2.5 year have passed till today when I’m writing this story, the major side effects i had observed now is my penis became hourglass shaped when flaccid, other than having wrinkled glans. I had lost around 26-27kg body weight, initially i was 81kg and now i’m just skinny as hell. So concluding everything till today every side effects that i having right now are ED, PE, watery ejaculate, always tired, forgtfulness/less focused, no urine urgency or i can pause my urine, sleep problem( got wake up after 3-4 hour of sleep), tinnitus, frequent cramps in body, weight loss, gut problems, unable to empty my bowel completely and one most important that skin has become thinner as well, cause now i get bruises very quickly like in very small collisions.

Till now not a single symptoms had got better, i have some sort of libido in me cause i can feel it. In morning sometime i can feel higher libido and somedays i can feel it high as well. My penis gets erect by manual touching but i can’t sustain my erection for long time. I haven’t took any sort of treatment or any trt therapy, life feels miserable doesn’t feeling any hope of getting better. Always stay confused, forgot things and unable to focus on anything and can’t even stay focused on my studies as well. Earlier i had a very sharp mind but now I’m unable to focus on my career, feel helpless to even push myself to get promoted in career. Thinking of sticking in same professional stream until end cause my slow mind cannot withstand in competitive market.
I’m also writing this story because i wanted some suggestions from you guys for some treatments and hormone therapy guidance cause i have zero knowledge about it. I know it doesn’t helped everyone but i wanted to give it a try casue i can’t live like this. I haven’t shared my problem with anyone, not even with my parents. Just expressing myself for the first time on this forum.

Below are my blood work report but all these bloodwork reports are from past year 2022, these are not recent reports. So if someone have any sort of suggestions for treatments please help out, i wanted to give it a try before ending everything. Until now i have my parents with me, i have a responsibility of taking care of them. But after them i would end everything.

Bloodwork Report ( these tests i had in February 2022), also i had testosterone tested 3-4 times it always stays in range of 450-600. Other than that i have high values of S.G.P.T/ALT, Billirubin Direct, Total Protein, Albumin in Liver function test.

  1. Androstenedione(serum, CLIA), Result== 6.15 (HIGH)ng/mL, Range( 0.3 - 3.1 )

  2. Zinc Serum, Icpms, Result== 104.05ug/dl, Range( 54 - 151 )

  3. IGF BP3(serum, CLIA), Result== 6.22ug/ml, Range( 3.5 -7.6 )

  4. DHT(5-alpha Dihydrotestosterone),(serum, ELISA), Result== 975.14pg/mL, Range( 250 - 990 )

5 Iron(serum by Ferene), Result== 116.34μ/dl, Range( 65 - 175 )

6 Magnesium(serum by Enzymatic), Result==1.73mg/dL, Range( 1.6 - 2.6 )

  1. Testosterone(serum by CMIA), Result== 656.19ng/dL, Range( 400 - 1080 )

  2. Uric acid(serum by Uricase), Result== 6.68mg/dL, Range( 3.5 - 7.2 )

  3. Progesterone(serum by CMIA), Result== 0.36 (HIGH)ng/ml, Range( <0.1 - 0.2 )

  4. LH-Luteinizing Hormone(serum by CMIA), Range== 5.01mIU/ml, Range( 0.57 - 12.07)

  5. T4 Total (thyroxine),(serum by CMIA), Result== 8.70μg/dl, Range( 4.87 - 11.72)

  6. FSH-Follicle Stimulating Hormone(serum by CMIA), Result== 3.01mIU/ml, Range( 0.95 - 11.95 )

  7. Insulin (Fasting), (serum by CMIA), Result== 14.9μU/ml, Range( 6 - 27 )

  8. PSA-Prostate Specific Antigen(serum by CMIA), Result== 0.66ng/ml, Range( 0.0 - 4.0 )

  9. Prolactin(serum by CMIA), Result== 31.41(HIGH)ng/ml, Range( 3.64 - 19.40 )

  10. T3 Total (Tri-iodothyronine), (serum by CMIA), Result== 1.17ng/ml, Range( 0.64 - 1.52 )

  11. Estradiol (E2), (serum by CMIA), Result== 34pg/ml, Range( 11 - 44 )

  12. Vitamin D (25 Hydroxy Vit D3), (serum by CMIA), Result== 20.6(LOW)ng/mL, Range( 30 - 100 )

  13. Cortisol Morning (8 AM),(by CLIA), Result== 21.2(HIGH)μg/dL, Range( 3.7 - 19.4 )

  14. IGF-1 (Insulin Growth Factor-1), (serum by CLIA), Result== 281.2ng/ml, Range( 117 - 329.0 )

  15. Growth Hormone (hGH Basal), (serum by CLIA), Result== 0.43ng/mL, Range( 0.0 - 4.0 )

  16. DHEA-Sulfate(serum by CMIA), Result== 803.8(HIGH)μg/dl, Range( 167.9 - 591.9 )

  17. ANTI-TPO(serum by CMIA), Result== 0.29IU/ml, Range( < 5.61 )

  18. SHBG (Sex Hormone Binding Globulin), (by CLIA), Result== 25.98nmol/L, Range( 18 - 144 )

  19. ACTH-Adreno Corticotropic Hormone(plasma by CLIA), Result== 75.57(HIGH)pg/ml, Range( 7.2 - 63.3 )

  20. Free Testosterone(serum), Result== 19.0pg/ml, Range( 1.0 - 28.28 )

  21. Free Thyroid Profile(FT3, FT4, TSH)
    Free T3 (serum by CMIA), Result== 2.99pg/ml, Range( 1.58 - 3.91 )
    Free T4 (serum by CMIA), Result== 0.99ng/dl, Range( 0.70 - 1.48 )
    TSH (serum by CMIA), Result== 1.34μIU/ml, Range( 0.35 - 4.94 )

  22. Vitamin B12(serum by CMIA), Result== 152.0pg/ml, Range( 187 - 833 )

Neurotransmitter Tests

  1. 5-HT(5 Hydroxy Trypatamine)(Serotonin), (serum, EIA), Result== 4.35 (LOW)ng/mL, Range( 70 - 270 )

  2. Dopamine(plasma, EIA), Result== 65.50pg/mL, Range( <100 )

  3. Adrenaline (Epinephrine), Plasma, (EDTA Plasma, ELISA), Result== 43.3pg/mL, Range( <=100 )

  4. Nor-Adrenaline(Nor-epinephrine), Plasma, (EDTA Plasma, ELISA), Result== 65.6pg/mL, Range( <600 )

1 Like

maybe 5-HTP or Prolactin

@indianpfs Looks like we are on the same boat. I’m from India too. Your sides coincides with mine.

Apparently someone who has had PFS for 15 years used Guanfacine to help them focus, memory and brain fog and they didn’t build any tolerance. It was prescribed to patients who got brain fog through long covid.

Again I haven’t seen many people use it for PFS yet, so could potentially worsen you as well. But if your struggling alot its worth a shot!

Also it has to be prescribed by a GP.

@indianpfs Just checking on you. You have be offline for quite sometime after posting your story. Hope you didn’t do anything harsh with your life.

No mate, just staying away from social media and internet to make my mind calm. Also trying to focus on my carrer, that’s why i didnt replied on any messages.

do not take 5-HTP which was recommended above

it made my PFS 10000x worse permanently

Recently, I watched a video featuring Alex Kikel and Ryan Russo. Ryan Russo hosts a separate podcast on his YouTube channel where he discusses a person who has recovered from PFS. Additionally, Alex Kikel mentioned that he has cured some PFS patients. Does anyone here know if they are legitimate or not? If anyone from the forum has been cured by working with them or is currently under their guidance, your insights would be greatly appreciated

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Their protocols are potentially very dangerous for people with full blown pfs. It’s more than likely that the sufferers they “treated” in inverted commas for reason were either light touch or in the early stages of pfs these are generally the ones who have a better chance of recovery and may have gotten better anyways.

If after many years scientists still haven’t fully worked it out or cone up with viable treatment it’s highly unlikely a couple of gurus like these 2 have the answers. One thing being touted is soduim valporate which I know from personal experience is very dangerous. I tried it years ago before making the connection to fin.

Profitteering from the desperate and hugely over charging from unproven protocols. Steer clear

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