Topical Minoxidil/Saw Palmetto-induced PFS

Member Stories
#1

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)? UK

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? 21, 170cm, idk my current weight

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

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? Topical saw palmetto once daily for 2 months. Topical minoxidil twice daily for one week (also used it on my beard to thicken it up)

What condition was being treated with the drug? Suspected diffuse hairloss

For how long did you take the drug (weeks/months/years)? 2 months (SP), 1 week (minox)

How old were you, and WHEN (date) did you start the drug? 21

How old were you when you quit, and WHEN (date) did you quit? 21

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

How long into your usage did you notice the onset of side effects? 4 days into using minox

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

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

Misc
[ ] Prostate pain
[ ] 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

[ ] Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Vitamins

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?

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

My life was amazing during late 2019/2020, I was doing great at uni (I major in linguistics), found myself a great group of friends and an amazing girlfriend, I noticed that my hair was starting to thin somewhat but it didn’t really bother me too much as I was in a good relationship and felt accepted for who I was.

Then things started to go downhill, I broke up with my gf in March and as a result started to really dwell on my perceived hairloss. I already knew about PFS and so have always been scared of finasteride, and instead I opted for topical saw palmetto and used it for two months every night, everything was okay until 10 days ago when I purchased some topical minoxidil and started using it on my scalp and beard twice daily. After a few days I immediately noticed a sudden drop in libido, which was always high previously as long as I could remember, I didn’t think too much about it until my 7th day of using minox by which point I wasn’t really getting erections at all. I searched the internet and found lots of anecdotes about minox (as well as saw palmetto) inducing PFS-like symptoms and quit immediately. That’s when the panic really set in.

It has been four days since I quit, and I’ve noticed some potential slight improvements but nothing too much really. The slight pain in my testicles has subsided, and since the day before yesterday I’m getting almost full nocturnal/morning erections no problem. I can also manage pretty forced pathetic erections during the day time if I really force myself - but otherwise I have 0 libido (except for slightly during noctural erections) and never get random erections during the day. I feel like a castrate and my penis feels dead.

My side effects are mainly all sexual. I still have plenty of energy and mentally I still feel very sharp. I am still very active and managing to keep on top of things, but have had recurring suicidal tendencies due thought of potentially having to live like this forever. In terms of other side effects, I do have some very minor joint pains in my legs, but that’s maybe because I’ve been going on very long walks with my dog every day as a form of cope.

I’m aware I haven’t taken fin but I’m still scared that I have induced PFS with minox/saw palmetto.

I have recovered
#2

I’m here because of Minoxidil. But this was most likely the saw palmetto.

1 Like
#3

That’s likely, thought the minox couldn’t have helped either. Now I’m just hoping things don’t get any worse, I feel as if I’ve still gotten off lightly compared to those poor folks who actually took propecia.

1 Like
#4

Wait , Wait ,

Minoxidil can cause problems to? i was thinking on using it but no way after reading this

1 Like
#5

There have been a few member stories here of those who developed PFS symptoms from minoxidil alone. Some have been made worse by it after assuming topicals were a safe alternative.

https://forum.propeciahelp.com/search?q=minoxidil

1 Like
#6

Aye, minox is horrible stuff, a lot of guys have had similar sides to me. It’s definitely not as bad as fin, but I’d still strongly urge you to stay clear of it.

1 Like
#8

Update:
December 2020 has been a very good month for me in terms of my symptoms. I am not out of the woods yet but I seem to be inching closer and closer to recovery.
My condition continues with its typical zig-zag pattern of upswings and downswings that seems to apply to so many other people here, but this month I had two particular upswings or “good weeks” where I felt almost 100% normal for the first time since this shit happened. This is fantastic news for me as before I didn’t feel “cured” even on upswings, just partially better, but this time around I felt more or less like my old self again. Of course, these upswings have still been inter-dispersed with downswings, but still, feeling this way again has given me a lot of hope.

From today I have also decided to commit to an autoimmune diet and have adopted Dr. Khazarrian’s diet as recommended by @Sawproblemo . My diet now basically consists of lean meats + veg + fermented foods like sauerkraut, without grains, dairy, sugar, processed foods etc. I didn’t want to go totally keto so will be eating sweet potatoes on an evening for carbs.
Having read the book I am fairly convinced that there is an autoimmune component to this disease and that it can at least be greatly improved by a health elimination diet.

I will provide another update after a few weeks of this elimination diet.

4 Likes
#9

I think I’m feeling better since this diet, it’s hard to say with this syndrome, but since the new year I’ve been having more good days than bad days.

I haven’t been following the diet laid out in the book to a T as I still eat eggs and nuts & I carb backload with rice and sweet potatoes. Overall, I’m trying to create a diet which works best for me and that will take a bit of experimentation, but still, I seem to be getting some progress from what I’ve been doing already.

My first two meals of the day consist only of protein (lean meat and sometimes eggs) + two types of veg then I will supplement my evening meals with gluten/nightshade-free carbs like rice and sweet potatoes.
I’ve been very diligent in avoiding gluten, dairy, sugars, and nightshade vegetables, as well as eating sauerkraut (for probiotics) every day. I will probably cut out eggs/nuts for a while in the near future too and see if that has a positive effect, but for now I’ll continue to eat them.

1 Like
#10

Thanks for keeping us up to date @Northumbrian

1 Like
#11

That’s very similar to what I’m planning to do, including probiotics. But I’ll be starting with 3 days water fast following 4 days bone broth and coconut milk (or water) kefir. after that going to implement a diet like yours, but in a 18:6 fast way. Lots of veggies like broccoli, spinach, oregano, curcumin, and raw garlic, pure coconut oil 3 tsp day. Bone broth and probiotic food every day, 3x day. Supplement zinc, vit C, magnesium, calcium, vit D3 and L-Glutamine. Fish oil too, no doubts.

Also, some other things like fasted exercise, cold showers, skin brushing, regular sun, TONS of meditation and Tai chi first thing day. Also practicing visualization method by Neville Goddard. Chamomile and Mulungu tea irregularly to adrenal support.

We’re gonna get there my brother. Hang on. We’re gonna get on the other side as the strongest mofos in this planet. And the best part: I have no doubt about it

2 Likes
#12

I had ed because of minox too. After 3-4 years i was almost the same as before minoxidil. Live as healty as possible. I took some suplements.

1 Like
#13

Seems like a solid plan to me, since yesterday I’ve also incorporated cold showers (a difficult feat in the middle of winter in the far north of England, but I’m getting there) as well as Wim Hof’s breathing exercises. Also hoping to try L-Glutamine, do you take it daily?

I am planning on doing a water fast or juice feast sometime too, I was planning on doing so in my freshers week at uni, but sadly uni is now online because of COVID (don’t want to do it at home because I’m living with my grandparents and worried they’d freak out if I stopped eating). Spinach is a great idea, and a couple of users here including @mariovitali and @tryingnottoworry got improvements with spinach/rocket alone. I’m going to try and eat a portion every day which is basically tryingnottoworry’s dolichol deprivation protocol. Raw garlic as you’ve mentioned, as well as red onions, also seem to give me an improvement when I eat them.

And thanks a million man, same to you, we’ve got this and will indeed come out stronger than ever when we beat this.

2 Likes
#14

Glad to hear you’re better mate. Healthy living with this condition is a must, I’m focusing eating well, abstaining from alcohol, and hoping to begin a good exercise regime when gyms open again. Which supplements did you find useful?

1 Like
#15

Update: February has been a very very good month for me, even better than December. I had a few unpleasant setbacks in January, but I’ve been riding steady for the past two weeks feeling almost recovered. I hope that I can retain this progress and that it isn’t just another temporary recovery.

5 Likes
#16

You still doing the cdnut’s protocol?

2 Likes
#17

Happy for your progress! Are you still doing the gut repair diet? What else are you doing that you think is helping?

1 Like
#18

More or less, but haven’t done the water fast/herbs yet as I’m still living at home because of covid and I’m worried my family would freak out. Been doing the diet/cold showers/avoiding xenoestrogens though.

1 Like
#19

I have been eating a modified paleo diet with carb backloading for the past 2 months, generally based upon the Gut Repair Diet but with gluten free grains and/or sweet potatoes in the evening.
Atm I’m taking a short break from the diet to see if it has had any positive effect on my condition, though I haven’t had any deterioration so far and I’ve kept my improvements, though I’ll get back on the diet soon.

Other things I’ve been doing are cold showers w/ filtered water and avoiding xenoestrogens, as well as avoiding alcohol and stress. Teetotalism has perhaps had the biggest positive impact on my condition, every time I used to get drunk I’d be impotent for 3 days or so after.

1 Like
#20

Still doing well, I’m as close to feeling normal again as I have ever been since crashing on Saw Palmetto and Minox. Great morning wood each morning, libido is back online, only lingering side effects are that it sometimes takes a bit longer to get hard than what I remember, and sometimes still need help with stimulation, but once I get things going everything is fine: no more ED and it lasts a while rather than going down straight away. And I can still get hard just to thoughts most of the time.

I’m probably 80% recovered at this point and hope to continue improving.
I think this may be partially due to lingering mental baggage, I’m still very scarred from this whole ordeal and still having genuine nightmares at times about my sides getting worse. This has obviously contributed to some performance anxiety which will take some time to shift.

2 Likes
#21

Congratulations on the 80 percent recovery

I’m saw P as well. Got worse from aromatase inhibitor. Took saw P again and got worse

Did you get the reduction in sensation, poor orgasm, poor semen equality and quantity as well ? Or the ED not accompanied with these other things ?

Not that the ED alone is not horrible I’m just asking

1 Like