Did Saw Palmetto ruin my life?

Where are you from (country)? Belgium

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

What is your current age, height, weight? 32, 186cm, 74kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Saw Palmetto

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? Around 400mg/day for about a year.

What condition was being treated with the drug? Hair loss.

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

How old were you, and WHEN (date) did you start the drug? 30

How old were you when you quit, and WHEN (date) did you quit? 31

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

How long into your usage did you notice the onset of side effects? Never noticed any, maybe some ball ache when ejaculating.

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
[ ] Complete Impotence
[x ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[? ] Loss of Nocturnal Erections
[x ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[x ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[x ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] 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
[X ] Testicular Shrinkage / Loss of Fullness
[X ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

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

[x ] Other (please explain): Not really numbness, but sometimes the same rubbery feeling of skin all over my body, which comes and goes.

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Proxerex, daily cialis, L-citrullin and L-arginine

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 blood tests after, which were all normal.

Hello everyone.

Ever since experiencing hair loss, I’ve been on minoxidil for about 9 years. Never had any side effects on it. Not too sure it actually did anything.

My hair loss started accelerating and, being afraid of taling propecia, I decided to give Saw Palmetto a try. I took it for about a year, but aside from some ball ache when ejaculating, I had no symptoms whatsoever.

I remember reading about possible PFS on SP, panicked a little, and quit taking it a couple of days later. Then all my symptoms began. Which sounds like I talked myself into it… but whatever it is, I’m dealing with it.

My penis started looking weird. It became harder and smaller, and stuck out more, instead of the usual floppy hang. My dorsal veins started bulging. I also had a slight curve when semi erect. The first days I couldn’t achieve erections. I thought I had “hard flaccid syndrome”. But after some days, it seemed to resolve. I visited urologists, neurologist, endocrinologists, but they couldn’t find anything wrong and suggested psychosomatic illness. I accepted this because I had been severely depressed since a breakup 1.5 years prior. I never took an SSRI but I was on Wellbutrin 150mg XL (bupropion).

A month or so later, I thought I was cured. I was taling proxerex which the endo prescribed but always figured he did it to give me a placebo. But my erections were back. The hard flaccid was mostly gone. My libido was high again.

Then, out of nowhere, it all died down again. This time, I also had severe penile numbness which even seemed to spread to my back en thighs. Before this crash, I had upped mu bupropion dose to 300mg. I quit cold turkey after this crash, though.

Blood tests were normal, ultrasounds were normal, MRI’s were normal.

I was pretty sure I had a muscular problem that was pinching my arteries and nerves (hard flaccid syndrome), and went to an osteopath trained in treating chronic pelvic pain with internal massage.

Numbness seemed to go away. I was convinced this was working. But my symptoms would wax and wane. I was put on cialis 5mg daily. Periods of extreme horniness (just thought induced strong erections) followed by periods of extreme anxiety and worsening of symptoms.

I was pretty sure my problem was a mental one. And I’m still sure anxiety and dysfunction of the nervous system plays a big role, but it’s been 7 months and if I’m honest, I’m nowhere near healed.

I’ve come to the only conclusion left (besides the diagnosis of conversion disorder which I’ve been given at one point)… that I suffer from the very thing I was trying to avoid all this time. PFS.

And I’m at a complete loss.

Trigger warning

The thought that I have fucked myself up beyond repair is becoming too much to bear. I’ve been under extreme stress because of this for the past 7 months, I’ve cried for help everywhere but. And as the days progress, I’m becoming more and more suicidal. I can’t live like this anymore.

I know it’s bad form and silly to ask for this here, but this my last cry for help.

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Probably

7 months that’s still early to draw any conclusion , i’d suggest you wait till you hit the 12 months mark before starting any treatment/protocol ; my sympthoms are somehow similar to yours , in the early days of pfs i was still able to sustain hard erections by stimulating the penis , unfortunately i crashed on a zinc-based treatment 8 months into pfs and it made things much worse , my advice for you is to be patient and optimistic , our issue is simply a case of androgen receptors been altered by finasteride , we know that finasteride crosses the blood –brain barrier so it altered the brain-penis connection by altering the function of the androgen receptors , we can easily reverse it if the mechanism of pfs is understood

Stay strong you have time to improve naturally. Don’t take supps to remedy the situation they could make things a lot worse. Try to do things you used to enjoy. Hang around passive fun people, be with loved ones and try some exercise. As important avoid 5ar foods as they may aggravate your symptoms. Fill out the survey too

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Thank you. I’m trying to retain a positive mindset, but it’s excruciatingly difficult.

I really thought SP was perfectly safe, I mean, I can buy it in a local “health” store.

Is recovery possible?

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@Crembo I know it feels very difficult when your steeped in it but recovery is possible. A lot do. I took fin on and off for years which is why I haven’t and like you and many others I did not know it could cause so many life changing problems. My problems started 20 years ago before any of this was known. I even took saw Palmetto in ignorance too. It should be off the shelves in the health stores. Gabba was banned in the UK for minor reasons yet this poison is being promoted like candy. On discussions with my endo he stated 18 months to two years is generally the optimum time for a return to normal. So you stil have plenty of time. Try to context this shit as stressing will feed the disregulation.

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Recovery is possible of course but it’s a long process , like i said if the mechanism of pfs was understood we could reverse it in a few weeks , more studies are needed so we can understand the mechanism of pfs

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Any blood tests? If so, post them here. If not, then do them and post.
Testosterone, estradiol, shbg, prolactin, tsh and ft4 at the very least. You might be lucky that it is a hormonal problem instead of a receptor or any other issue that is yet to be discovered. You haven’t checked everything yet, so this would be in your best interests.

Also, since it was more than 3 months, please fill out the survey.

Thank you all for your answers. I’ll fill out the survey.

Anything that can aid with recovery?

I donn’t think I can endure this hell much longer. Sorry for being so down.

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Many people on here have sympthoms that are 10 times worse than yours and they’re still fighting , keep the faith and be patient , it’s a long process @Crembo

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I got a hold of my blood tests taken in may ‘20.

Prolactin 12.3 µg/L ( 4.04 - 15.2 )
Hydroxy vitamin D (VITD) 27.6 ng/mL
PTH 31.5ng/L ( 15-65 )
LH 3.4 U/L ( 1.7-8.6 )
FSH 3.0 U/L ( 1.5-12 )
Oestradiol (E2) 27.0ng/L (11.3-43.2 )
progesteron 1.78ng/mL (0.25-1.39 )
Testosteron 539.0ng/dL (267.0-929.0)
SHBG 25.6nmol/L ( 11.6-71.2 )
Free testosteron 12.8ng/dL (6-25 )
DHEAS 519.0µg/dL (160-449 )

Everything normal according to my endo. Test was lower in january. DHEAS was around 700 in january.

I’ll give it some more time then. Maybe my body will recover…?

Brother keep calm and stay hard. If you have a good performance whit cialis take a cialis… Give you a time and if you stay alone speack about your family about your problem… Stay calm and wolking running if you can listen music whathing TV and stay whit friend. The life is long… If you feel exstausting of maind speak about your brother sister mother or dad…

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Hey mate do not entertain those thoughts, we all know how tough it is but you have to be strong. Take @Preoccupato advice and reach out to those close to you. Don’t give into despair. Be as positive and hopeful as you can about what could lie ahead.

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Hey everyone,

Just a little update.

I’ve hopped on a paleo diet since a couple of weeks and am trying to eat as healthy as possible. Just to start trying something…

In the last month, I’ve had a couple of upswings. Days where my genital numbness seemed a lot better with much less hard flaccid. These days are sparse though and I’m on a downswing again at the moment. I’m not sure whether longterm I’m in an upward or downward trend. The better days make me very hopeful, though. They just don’t last all that long.

Mentally, I was a complete wreck and dangerously suicidal. I was hesitant on going on any meds again, but to combat my severe depression and suicidal thoughts, I agreed on Wellbutrin. I’ve taken it before without many issues so I’m not worried it will aggravate my situation. Honestly though, if I hadn’t asked for Wellbutrin specifically, they would have given me an SSRI. I cannot comprehend they’d prescribe me something that would ADD to the symptoms I’m already depressed about. I am then accused of overanalysing, playing doctor myself, focusing too much, and well… all of that might be true, but if I hadn’t looked it up and told my own doc I wanted Wellbutrin because of its superior side effect profile, he just wouldn’t have given it to me. Seriously, sometimes I actually believe I AM the doc in that room… Sorry for the little rant. :smiley:

Anyway, I doing some more blood tests with my endo this week, but I don’t think he’ll know what to do. My previous blood levels were OK, so I am “OK”, and that’s kind of it for diagnostic tools. He was very understanding of my situation, though, but he’s not willing to prescribe treatment for something he can’t diagnose. I can respect that, but I might have to find a doctor who will or at least supervise, should I decide to take action.

In the meantime, I’m thinking of supplementing with some amino acids like arginine, citrulline, carnitine, BCAA and maybe some black maca too? They seem safe enough and effective in some people, I’m around 8 months after taking my last pill. Around 6 months after my first heavy crash. Would you advice to wait a bit more and give myself time to heal before supplementing?

Courage to you all, friends.

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I would be careful with supplements brother. Especially with MACA its anti androgen.

Black maca supposedly does not have an anti-androgenic effect, I thought.

To whom it may concern,

I’ve definitely had improvement in penile sensitivity compared to my crash months ago. There’s more sensation in the skin. So I hope this is a sign of slow recovery.

I’ve been on cialis 5mg daily for three months, which helps and allows for sex. Now that I’ve been off, it is obvious that my erectile dysfunction is still pretty severe.

I have small windows were my libido seems intense but never do they last.

The hard flaccid differs depending on whether I’m sitting or standing… Which seems to point more to pelvic floor dysfunction. Some with pelvic floor disorders display exactly the same sexual symptoms. So I’m continuing to see my CPPS physical therapist. He sensed a lot of tension last time.

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Does your physical therapist recommend PC muscle exercises? Does he recommend kegels or pelvic floor relaxation?

I need to find a PT who can work with pelvic floor issues. I think libido is weird in that it’s partially from brain & hormones however more frequently getting erections may increase libido as well. I.e. “erections beget libido” to some degree just as libido begets erections.

Really hope you get better.

Hey,

He recommended relaxing the pelvic floor by diaphragmatic breathing, and as a way to tone down an overstimulated sympathetic nervous system.

Hope we get better soon

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