Where are you from (country)?
US
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?)
Searching for PFS forums on Google.
What is your current age, height, weight?
31 , 5’ 9" , 132 pounds
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.)?
500 mg every day SP
What condition was being treated with the drug?
I started because I wanted to try growing out my hair, should never have even tried.
For how long did you take the drug (weeks/months/years)?
SP - a little over a month
Date when you started the drug?
SP - July of 2022
Date when you quit the drug?
Can’t specifically remember besides it wasn’t long after a month
Age when you quit?
30
How did you quit (cold turkey or taper off)?
Cold Turkey
How long into your usage did you notice the onset of side effects?
During the month of taking it, things continued downwards after that. Only connected the dots later.
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
[ x] Complete Impotence
[ x] Loss of Morning Erections
[ x] Loss of Spontaneous Erections
[ x] Loss of Nocturnal Erections
[ x] Watery Ejaculate
[ x] Reduced Ejaculate
[ x] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[ x] Emotional Blunting / Emotionally Flat
[ x] Difficulty Focusing / Concentrating
[ x] Confusion
[ x] Memory Loss / Forgetfulness
[ 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)
[ ] Penis curvature / rotation on axis
[ x] Testicular Pain
[ x] Testicular Shrinkage / Loss of Fullness
[ x] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ x] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes
Misc
[ ] Prostate pain
[ x] Persistent Fatigue / Exhaustion
[ x] Stomach Pains / Digestion Problems
[ x] Constipation / “Poo Pellets”
[ x] Vision - Acuity Decrease / Blurriness
[ x] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ x] Frequent urination
[ ] Lowered body temperature
[ ] Other (please explain)
x - dry mouth
x - dry burning eyes
x - burning brain
x - inner ear pressure
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Numerous, I’ll explain the best I can the time line of what I’ve done since then but things around the crash are blurry.
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)?
Anything not listed in the above questions you’d like to share about your experience?
I only learned about this condition in passing when I was considering supplements for growing out my hair, I had a high sex drive before this all happened and was quite hyperactive. A very physical outdoorsy person. I didn’t think such a thing was a huge risk for me and I only heard about it from saw palmetto. I also stumbled upon lions mane sickness which was surprising to me as I have been taking lions mane for a couple years now (and discontinued when this all got out of hand in a panic not knowing what was going on with me) which also likely caused an interaction with the saw palmetto. I was also on NAC 1000 mg every day as it helped with my anxiety levels but this may also likely have contributed. Recreationaly I was also a heavy kratom user (around 30 grams daily) and was also using HHC a couple times a day at the time both of which I also cold turkeyed in my panic over what was going on. So my situation has a lot more complexity at play here but it seems Saw Palmetto just broke the camels back.
Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
Well like I said it was the end of June and I wanted to see how my hair would grow out and thought I might need a boost so I did some research and ordered saw palmetto. At the time my health wasn’t perfect and I have a history severe digestive issues, immune problems (I had what I believe was MCAS but wasn’t diagnosed, had multiple chemical sensitivity, and numerous food sensitivities that severely limited my diet). And thus begins the worst mistake of my life, when I was first started taking it I didn’t really notice anything at all. Slowly things started getting worse after maybe the first week, I was getting horrible fits of anxiety and sadness. I tacked it up to stress at the time even though technically I didn’t have too much to worry about, I’ve always been prone to anxiety but this was very out of character for me.
As this started to happen I noticed I was getting much more gas and bloating, I always had issues but I wasn’t eating anything different besides maybe fried chicken more than I should that Summer. I had more money, was living it up a bit more at the time and was also getting more take out more often as well as going to more shows and other outings so I also tacked that up to putting a bit too much stress on my digestive system. So I dialed back and ate better but this didn’t do anything and the emotional problems and digestive issues with it only got worse. There was nothing that could relieve any of it and things stayed like this for the rest of the month.
I noticed no change from saw palmetto at all with my hair so I dropped it shortly after the month was over. Things continued to go downhill though over the next month (this was the beginning of the big crash). I begin to become completely apathetic, I just for some reason couldn’t find the drive to do much of anything anymore but sleep and eat. The episodes of emotional agony began to get a lot darker and I developed a severe depression I haven’t experienced in my life. Nothing could pick me up anymore, all the coffee in the world would do nothing. Vaping HHC provided almost no more of a pick me up either I mind as well have been vaping water. I had never been so tired and lifeless in my life but I wasn’t prepared for how bad it would get.
As the next month progressed I began feeling dizzy in waves throughout the day, I could feel almost nothing emotionally, and then I noticed one of the most horrifying symptoms which was the sexual anhedonia. I wasn’t in a relationship at the time and one recently ended before this all happened but I was talking with someone online and in the shower I noticed when fantasizing I was unable to visualize anything and my genitals were almost completely non functional. I was thinking about them and could feel nothing, when I finally after insane amounts of stimulation was able to get it up in a very pathetic fashion the orgasm felt like nothing. I was beginning to get very worried at this point as something was clearly very wrong and it wasn’t in my head. Shortly after this horrifying discovery I had a camping trip which was the last week of the month lined up with my father we had planned that before all this happened I was excited about. I tried my best to enjoy it but had almost no energy and couldn’t eat much without this all worsening (I wasn’t aware of food worsening the condition at the time, had no idea what I was dealing with until looking this all up again after the fact as I scrambled around trying to figure out what was wrong with me).
This camping trip was the final nail in the coffin, on what would have been the second to last day we were out there as we were making food outside I felt so dreadful all around I had no choice but to utter the words “Dude I don’t feel so well” (my famous last words of this situation) in front of literal fresh made lobster we were cooking up and what would have been if I wasn’t like this an awesome night. I over the course of that day got weaker and we decided cause of my state of health to head home the next day. The next day I felt dead as if all color had drained from the world in between random bouts of anxiety, we had a couple places to go that morning but I couldn’t enjoy anything. I forced myself to attempt to enjoy a couple fresh baked bagels which I used to love before leaving but couldn’t feel anything from food anymore either.
The entire ride home I just cried and we tried to line me up a doctors appointment to try to find out what was wrong, they didn’t know about the saw palmetto or anything I was taking at the time but they did help me with medical stuff so we lined up some appointments and tests anyways. I already had no faith in medical as I’ve been in past medical struggles let down and left to self treat myself. No one understood and I was simply gaslighted often so I gave up. On the last day of the camping trip I dropped almost all my supplements save for the methyl b12, magnesium malate, taurine, niacinamide 500 mg, HHC, and NAC 1000 mg. (I was on those at the time + methyl-folate 1000 mcg, kratom, quercetin 500 mg, and the lions mane)
When I got home things over the next weeks began to get more hellish. I began to get burning in my legs, arms, face, head, and through my genitals in waves throughout the day in addition to everything else. These went on for around a week as I forced my way through life with all the energy I had left as I was still working at the time but I was in a state of near panic attack the entire time and could only get through each shift by the skin of my teeth. I was having kratom withdrawals from my high dose cold turkey compounding the situation and giving me insomnia too. Then one day I remember at night it felt like fireworks going off in my brain, horrible brain zaps all night long and every time I had them I felt even worse. It was late so I tried to sleep it off but my body was violently jerking in bed as they continued and I tried to force sleep.
The next days were the beginning of my long journey back to health. I almost couldn’t get up from my chair in my room, just moving from the bed to the chair was a struggle because I had no physical energy left. I was like a zombie. My body all over was nearly completely numb, I could pinch myself hard anywhere and feel almost nothing. It felt as if someone had killed me but left me in my body. My ability to feel anything but this subtle sense of impending doom and dread in the background was gone. I had complete sexual dysfunction and couldn’t even get aroused. If I tried to get aroused my genitals would literally get smaller and retract further, it was horrifying because I never seen such a thing in my life. As the days went on burning began to creep back in but this time it felt like just an area in my brain behind my forehead. Day in, day out waves of burning brain with horrible pressure in my head/ears and screaming mechanical sounding tinnitus. I lost all reactions to other things I typically reacted to MCAS wise though, my body just wasn’t responding to almost anything and I was stuck in this numb but burning anhedonic hell with no way out. This remained stable for months as I tried to work things out and as I went on I noticed my diet was also playing a big role so not only did I go through many dietary abjustments but I also played with many supplements too. I’ll make a post after this detailing what I did and the course of my recovery (I am not 100 percent recovered though, this isn’t c a complete recovery story. I’d say I’m around 80 percent - maybe 90 percent on a good day).
Currently I am still dealing with the tinnitus, a little of the pressure in my left ear, not all my libido is back yet but I can get hard with some stimulation as visually I can only get aroused enough to get a semi at most, morning wood is back but can be better or worse that seems to fluctuate a bit depending on my diet and state of my digestive system somehow, creativity is back, anhedonia is gone but still can’t really get a super energetic feeling like something is still being blocked a bit (I believe this has something to do with my cholinergic system though because I still can’t feel stimulants or nicotine very well but I regained the feelings at a baseline), skin sensitivity is 100 percent back. All in all I seem to be left dealing with some residual sexual dysfunction stemming from some overall energy problem in my body and something going on with my digestive system in this which was never good to begin with. My body isn’t as reactive to things as it should be anymore and I don’t really know what is wrong. I still have some of the neuropathy in my face and head but it’s more like an icy hot feeling in my facial nerves that appears to flare the most when my immune system is going a bit nuts.
I will later or tomorrow type up everything I did so far and keep this thread updated with anything else I have to offer. It’s a long story but I’ll try my best to keep it coherent as I largely just threw stuff at the wall and some things stuck eventually. Keep in mind because of my complex family dependence situation and lack of money I don’t really have access to lot of testing I can through doctors. I haven’t tested my hormones or luch else besides testing positive for lyme after this all happened in what my doctor thought might have been going on. Lyme herbals actually played a big role in my getting to where I am right now though strangely.