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 (country)?
Germany
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 search; was looking for help with my trt protocol
What is your current age, height, weight?
24 years, 178cm, 65kg
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
None of them - used a herbal bath containing Horsetail (equisetum arvense) and Stinging Nettle
found out about a year later when I first heard about PFS, that these herbs have 5ar inhibiting qualities.
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
n/a
What condition was being treated with the drug?
skin problems; I had weirdly soft, stretchy, dry skin
For how long did you take the drug (weeks/months/years)?
used the bath about 5 times, symptoms started after first use
How old were you, and WHEN (date) did you start the drug?
23 (12. Nov. 2017)
How old were you when you quit, and WHEN (date) did you quit?
23. Dec. 2017
How did you quit (cold turkey or taper off)?
just stopped using the bath
How long into your usage did you notice the onset of side effects?
after first use, maybe 30 minutes after getting out of the tub
What side effects did you experience that have yet to resolve since discontinuation?
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 (sometimes)
[ ] Complete Impotence
[x] Loss of Morning Erections (sometimes)
[x] Loss of Spontaneous Erections (sometimes)
[x] Loss of Nocturnal Erections (sometimes)
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[x] Inability or Difficulty to Ejaculate / Orgasm (sometimes)
[ ] Reduced Sperm Count / Motility
Mental
[x] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[x] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[x] Severe Depression / Melancholy
[ ] Suicidal Thoughts
Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[x] Testicular Shrinkage / Loss of Fullness (even before TRT)
[x] Genital numbness / sensitivity decrease
[x] Weight Gain
[ ] Gynecomastia (male breasts)
[x] Muscle Wastage
[x] Muscle Weakness
[x] Joint Pain
[x] Dry / Dark Circles under eyes
Misc
[x] Prostate pain
[x] Persistent Fatigue / Exhaustion
[x] Stomach Pains / Digestion Problems
[x] Constipation / “Poo Pellets”
[x] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[x] Increased hair loss (body hair/beard)
[x] Frequent urination
[x] Lowered body temperature
[x] Other (please explain)
recurring myocarditis
gluten intolerance
still bad skin (reason why I used the bath)
headaches
tooth pain
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Not just treatments, but things that could be relevant
in chronological order as far as I remember (- no obvious positive or a negative effect, + I think has helped in some way)
Maca -
L-Arginine -
Vitamin D - (the first months +, since around summer 2018 -)
Vit. E -
Vit. K - (the first months +, since around summer 2018 -)
Magnesium - (the first months +, since around summer 2018 -)
Zinc - (the first months +, since around summer 2018 -)
Boron - (the first months +, since around summer 2018 -)
Physiotherapy for pelvic floor -
Root canal treatment with anaesthetics and antibiotics +
Prostate massage + (helped a bit)
Cialis 5mg - (at first, helped a lot for bloodflow; after some months it only helped with already good erections, but I got more numb with bad erections - and that always makes me go soft after some minutes)
MRI of the pelvis with contrast +
Alcohol - (beer: helped a lot at first, then vanished)
Massages +
hot/cold showers -
TestoGel (2-3 pumps daily) + (helped for some weeks)
Gluten free diet +
var. amino acids -
Sorghum -
Testosterone enanthate + (varies from +++ to -)
Alcohol + (red wine and beer: if I respond to it, it can help with low/high E2 symptoms)
MRI of brain with contrast +
Iodine and Selen -
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)?
only post: quite high SHBG before starting TRT, low FreeT because of that; light Hypothyroidism
Anything not listed in the above questions you’d like to share about your experience?
Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
Sorry for the long text, but I hope I can contribute something with my kind of strange story.
Let me begin in my youth:
As a teenager I lived in southern Germany and was a more or less normal guy.
when I first became sexually active, I could last very long and I was able to orgasm, but it took quite some time.
I was partying a lot, drank a lot, tried some other stuff and was a very social guy.
when I got 18, I moved 600km away from home to a big city and started working. For the first 1.5 years, I was partying even more, and was incredibly confident.
I met my girlfriend (now wife) and everything was great.
After 1.5 years of working, I got Asthma from my job.
After quitting my job, I felt a bit burned-out and noticed the first strange thing happening to my health:
I gained 35kg (was 55, afterwards 90) in a period of just 2-3 months, without any apparent reason.
with 90kg I started having premature ejaculations.
I suspected a thyroid issue, but my GP during that time said my thyroid was okay (though she only tested for TSH and didn’t even show me the results)
I had this weight for a 3/4 year and felt very uncomfortable, lost my confidence and felt fatigued. I got pneumonia and afterwards I decided to lose the extra weight.
I started a new job, I did a lot of sport and ate less, esp. a lot less carbs. after 1/2 year I was back at my old weight. The premature ejaculations went away somewhere along the way.
I felt great, more confident and really healthy, even though I still ate a bit less.
For the next 1.5 years, everything continued the same way, I felt increasingly better, except for recurring lung problems.
At this point I noticed the skin problems I mentioned above. Besides that, I had the libido of my life for some months. In this timespan, I got a strange rash on my upper body (itching and painful) that went away on its own.
At the end of that timespan, I got lung problems again (and for the last time).
During that pneumonia, I thought I should do something about my stretchy skin and bought a herbal bath for better skin (from a normal drug store).
Used it for the first time on Sunday, 12th November 2017.
Immediately after the bath my coughing (lung problem/smoking) stopped. My skin felt really rubbery and quite numb, but I thought nothing about it.
I slept really strange and I believe it was the first time in my life I had no nocturnal or morning erection.
I had a really numb feeling in my genitals, but didn’t think much about it.
After arriving at work, I needed to pee really often and noticed a white discharge in my underwear.
Around noon, I got heavy stomach pain and went home early. I also started having pain in my prostate area.
At home, I tried to use the toilet, but I felt so constipated that it was almost impossible.
Some hours later, my wife and started having sex, but I went completely numb after a few minutes, so that it was impossible to finish.
After a few hours I also felt really numb in my brain. I felt dizzy during watching some football game, I couldn’t even follow. I thought, a beer might help, but even after the third I didn’t feel any alcohol.
The next morning, I still felt the same and stayed home from work. I went to the doctor, but he just told me to relax, take a walk or go to the sauna. And so my wife and I did. It didn’t help, but at some point I noticed it also didn’t activate my libido (which it normally did; being naked with my wife, nudity in general… european saunas = completely nude). At home, I didn’t want to have sex because I felt so numb.
the brain fog got even worse and I couldn’t sleep longer than 2 hours.
the next day I also got heavy muscle/joint pain, which made walking and esp. stairs really hard. I also noticed I was losing body hair.
The following days, nothing really changed, the numbness got slightly better, but it was still impossible to get erections. I spent every free minute consulting with doctors, who wouldn’t help me and always told me I was just stressed.
I went to some urologists who check my prostate, they said I have the smallest prostate they’ve ever seen and that I should be very happy about it.
I mentioned the herbal bath to the doctors, but they dismissed it, so I eventually stopped talking about it. I used it a few more times until christmas, but always felt bad afterwards, so I stopped using it.
Two weeks after the symptoms started, I felt different for the first time. For 3 days, I felt almost normal, except for a feeling of inflammation everywhere. I felt almost hypersexual during these 3 days.
Then the symptoms came back like 80% for about 3 months. I tried different things like supplements, ate a bit different, tried some relaxation methods, went to a pelvic floor therapist… But most of the time I still felt really bad, except for a few days in between where I almost felt normal.
I got a bad inflammation of a teeth root during that time, which got treated in February 2018. I got anaesthetic and antibiotics for my teeth, and somehow, that helped with my overall symptoms.
A few weeks later I tried Cialis, but I quickly noticed they only helped on the days when I already felt better; on the bad days they had much less effect.
I went to see an endocrinologist for the first time; he found out that I low T (total T of 350 ng/dl) and high SHBG (50 nmol/l), but said those were perfectly normal labs for a guy of my age…
I tried some Vitamins etc., and after some time, I got a MRI of my pelvis (suspected a pinched nerve or something… don’t know what I was thinking during that time)
3 days after the MRI I felt a bit better. I noticed that my skin problems were gone.
I felt okay for some time, had less pain, less brain fog and could have sex. I continued taking cialis because I felt it would help me heal in some way. I also started feeling alcohol again.
After some really stressful days I could relax again, but my symptoms got worse again and I developed a lymphocele that vanished after a few weeks.
We then moved back to southern Germany, to a village close to my hometown. (June 2018)
My symptoms still fluctuated back and forth, and I decided to look into hormones again to see if I could find some treatment.
I found a doctor who prescribed me Testogel since he found my testosterone was too low for my age.
I felt better immediately, had a nocturnal/morning erection for the first time since I started feeling bad, my mood brightened, skin got better, I had less pain and more energy.
But again, I started fluctuating after two weeks, but I thought my body needed some time to get used to it, or that my E2 was too high. I also went to a cardiologist who found out that I had a myocarditis that was healing off.
I couldn’t get a new appointment and prescription before we went on vacation, so my Testogel got empty on the last day of vacation. Just 2 days later I felt completely normal and symptom free for the first time. No pain, no numbness, perfect skin, great sexual function. It stayed like this for 2 weeks (no Gel, no cialis). I feel like it’s a “full recovery”.
2 weeks later the symptoms start coming back. Starting Testogel again.
Some weeks later I have another test with the cardiologist, the myocarditis was gone but my heart was still doing weird stuff the doctor couldn’t explain.
She reffered me to the university for further endocrine testing.
They said I was just stressed, but agreed to run some tests and do a MRI of my brain.
I felt almost normal for a month, high libido etc. during this month, my wife gets pregnant.
Then it got really stressful, because she had complications and we weren’t sure for a week if she could keep the baby (luckily, it’s all fine now).
About a week later, all my bad symptoms come back. At this point, I’m searching through the internet again and found this forum. It gave me some ideas of what I could try (amino acids, sorghum…)
It was the first time I heard of PFS and I started to research if the stuff I used might have something to do with it. And it turned out that it might be possible.
I also changed from Testogel to injections because of my wife’s pregnancy (because of the risk of the gel transferring to her). The first 3 days I had amazing effects from it, but then it started to fade.
I couldn’t sleep for almost a month. 5 out of 7 days I couldn’t sleep at all.
I notice a weird feeling around my thyroid and remember I also felt that when I was overweight.
I got my thyroid checked and they find out I have slight hypothyroidism along with a really tiny thyroid.
2 weeks before christmas I stopped injecting T because the university doctors wanted to run some tests.
I had the MRI (with contrast) just before christmas.
The evening after the MRI I start injections again. I drank some wine (but wasn’t really drunk), and somehow passed out in the bathroom and hit my head on something. My wife “woke” me up when she noticed I was missing. When I came to, I had foam on my mouth and incredible headache, so I went to bed immediately.
The next day I have strange neurological symptoms and had to spend the whole day curled up to a ball.
One day later it’s christmas and I notice that something feels different.
I have completely different sensations than before; the floor beneath my feet feels different, the air feels different; but it’s a good different.
After a week I feel absolutely normal, apart from a not-so-good morning erection every now and then.
I feel like it might stay like this now.
It lasted until the evening of April 15th.
I the meantime, I get the results of the MRI: I have a 5mm adenoma on my pituitary gland.
Even though they suspected exactly that, they tell me it’s just a coincidence and can’t be the cause of my symptoms.
I am still injecting testosterone, and adjust my alcohol intake according to my symptoms ( i.e. if I feel like I have low E2 symptoms, I drink a beer or two and usually feel better the next day.)
Like I said, my symptoms started coming back on April 15th; I noticed a sharp pain in my prostate and gradually, all other symptoms come back. But still with the typical fluctuation that I have.
On April 18th I had another appointment with the thyroid doctor who prescribed me Iodine to see if it helps with the hypo.
Since starting the iodine, I have some pressure on the back of neck, headaches and a blocked nose.
Last week I reached another low point; full ED, bad skin, fever attacks, heart racing and tremor so bad that I couldn’t even cut my own meat at dinner.
… And that’s where I’m now. I feel a bit better compared to last week though.
I’m still not really sure if I even fit in the category of PFS, but I see many similarities… I still wanted to share my story; maybe somebody finds it interesting or insightful. 
Things I noticed throughout my journey:
- I can’t get ill (cold, flu, pneumonia, whatever) anymore, even though I was ill very often before
- the better my skin is, the better also the rest of my symptoms
- if I feel good (now on TRT), my scrotum is tight and cold; on bad days it’s soft and warm. (That way I can see if TRT is working or not)
- I seem to react badly to longer water contact; if I take baths longer than 5 minutes (even without anything like soap in it) or swim in a pool, I noticed that the next day after waking up I always have prostate pain with discharge. (don’t know why, maybe my body reacts to the water because a bath caused my problems?)
- if I’m feeling good, I can eat gluten without consequences
- my SHBG has been 50 nmol/l in early 2018 and stayed like this until I started TRT. As expected, with TRT it fell to 36 in the first 2 weeks. Following bloodwork showed it continued to fall. In October it was 26, but rose again when I felt worse. Around Christmas it fell again to 22.
In February, it was 16. At the start of April it’s 13, but in May, when I’m feeling bad again, it suddenly rises to 40 (so, I suspect that something is wrong with my SHBG, esp. on TRT it shouldn’t be able to rise if I don’t change anything about my T dosage or lifestyle.)
Thanks for reading!