My Story: Tough Break

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)? 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?

Google

What is your current age, height, weight?

33/5’11”/171 (down 50 pounds)

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

Three rounds of Accutane (ages 15/18/28) and crashed with extreme THC use (300-400mg daily use of edibles)

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?

What condition was being treated with the drug? Acne

For how long did you take the drug (weeks/months/years)? I believe each round was around 5 months.

Date when you started the drug? See above

Date when you quit the drug? See above

Age when you quit? THC at 33.

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

How long into your usage did you notice the onset of side effects? I quit because one night on 8/1/23 during sex, my penis just went hard, short, and numb (hard flaccid) and libido just vanished.

What side effects did you experience that have yet to resolve since discontinuation? All except extreme night sweats.

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 (night of 8/1
[ X Reduced Ejaculate (night of 8/1
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

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

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

[ ] Other (please explain)
Night sweating/dry skin/insomnia

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? TRT, 5mg daily cialas (failed), 100mg viagra (failed)

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)? Total T at 240.

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.

2 Likes
#2

Hey man,

“Welcome” to the club. I also have the numb shrivelled stuff going on… It’s horrible isn’t it. We know what you’re going through.

Accutane, finasteride, saw palmetto (my case) and other compounds all produce the same syndrome. I believe THC can inhibit DHT from binding with the AR too. Did you ever experience side effects of the same nature after accutane?

You’re still an early case and have a good chance of improving with time, btw. So don’t give up hope.

Because even if you do not improve, there’s good news: You’ve entered this community at a time we’re finally starting to work together in figuring this shit out. The only way is through active research by top scientists, which is what the PFS Network is doing.

Things you can do in the meantime:

  • Do not try to self medicate and “cure” it by taking random supplements, all have been tried, none work, and they can make you worse
  • Consider telling your story on the PFS Network podcast, or the Moral Medicine youtube channel: awareness is key
  • Consider donating to the PFS Network: we need to find out what is wrong in the first place, and for that, we need to fund research.

If you want to talk, hit me up.

6 Likes
#3

I admire your positivity - in all sincerity.

#4

To answer your Q, I experienced a lot of odd side effects on accutane. But never sexual, so (to be candid) I just let it slide. But what happened on 8/1 is indescribable. Like lightning struck and my brain just turned off. Only down hill since, unfortunately.

1 Like
#5

Ended up getting an implant w Dr. Irwin Goldstein, if anyone curious as to process happy to DM.

#6

How you doing otherwise though? Did things improve on their own in some areas or did you do anything else to improve anything? There may be something to this THC (and THC like compound in my case as I was heavily using HHC at the time of my crash) related mechanism in extremely severe cases like this because mine was as bad yours, lots of similarities here. I was a saw palm victim and my decline was pretty steady but I remember certain days where I felt the sharp decline into a lower state. The biggest one was the day when I was attempting to live my life despite the symptoms I had thus far and suddenly it was like my brain had a blue screen of death and I plummeted over the next days into severe weakness, skin numbness, complete anhedonia, and neuropathy I got. I quit the kratom I was on at that time cold turkey but I know the HHC was the last to go, can’t remember when I finally stopped puffing but it was at some points in the very early months (the 1st or second) post crash.

#7

They’re going. I think the biggest thing for me is seemingly having plateaued - I can’t personally state how tough the “what does tomorrow (or even this afternoon) look like?” was on my mental health. It was torture.

I definitely made progress. I would say my libido is most lagging. Followed by numbness and orgasm. I never get anything near that sort of “rush” to fuck anymore, inc during. And I never get that melting sense of relief following orgasm. But I’ve found ways to cope on the sexual front. Other sorts of misc. stuff persists. Body still a mess - just an absolute unyielding reshaping in terms of fat distribution (and loss of tone/muscle, esp in arms and legs).

Biggest thing for me by far was the subsiding of deep depression. Those sort of “why get out of bed” demons eventually gave way. I think the biggest factor during this past year, and particularly wrt mental health, was time.

#8

They always come back. There really is no winning

#9

You’ll get further eventually if you keep trying. I’m starting to break through the final layer of my symptoms but I don’t know what is going on entirely. I’ve had multiple brief windows of being 100 percent out of the woods with it, the latest thing I did was start using cinnamon on my breakfast every morning, wasn’t really thinking about this. I just decided to try it again one night when preparing my breakfast the night before and noticed I felt something familiar from it. I thought it was just me at first but I noticed in bed that night my skin sensation was better all over on my body in ways I didn’t notice were missing. When I got up in the morning and had my breakfast with a bunch of it on it I felt really good again. Laster that night I decided to try some raw as I was making my breakfast for the next morning and I was definitely getting consistent benefits from it. I kept going and they stuck, orgasms and sex feels completely normal again. No difference than before, I have no idea what is so special about cinnamon in my case but it’s been like a week at this point and everything is still fine.

Here’s something else really interesting the other night before thanksgiving I decided to get some nasty greasy chinese take out. After having a bunch of it I noticed a hint of that familiar step backwards brain burning feeling creeping back, not know what else to do I broke out the cinnamon, shook some in my hand, and ate it. Like magic not more than 10 minutes later it subsided and I was alright save for feeling kind of blah cause I just ate a ton of junk that no one should be eating ever. The next day on thanksgiving, the stuffed bread I had over my families place didn’t really do much to me. Something about that chinese food specifically beat things back a little but then cinnamon just immediately switched the gears back.

I’m so confused now because I have no idea what this could mean.Was the initial downfall I had with saw palmetto from a reactivation of something that very quickly took over my body? Could some cases be viral in nature and certain things in vulnerable individuals like saw palmetto can create the perfect conditions for a total disaster? All of my improvement milestones had something to do with immune modulation and things with antiviral components. Propolis, possibly coffee compounds, K2, cistus incanus, my weird journey with D3, sudden intolerance to my old methyl-b12 that resolved upon pushing the amount of coffee I was drinking higher to enough of an extent to reintegrate it, and finally resolved with taking a only rice flour added supplement of it at the same old dose. I got some weird wild card like modulation of symptoms from nicotine and it’s never the same every single time. Early on I had a great raw physical energy window with honey that was the same as with coffee but eventually sensitization ocurred and honey also messes up my digestive system badly so I couldn’t continue with honey tea (but I’m considering swishing it in my mouth every morning and spitting it out). Not surprisingly after that propolis makes my symptoms permanently better much earlier on. A lot is starting to make sense here.

What is your reaction to raw cinnamon like (just the typical cassia variety, yeah it’s not as good for you as the other but it does the thing and I’m chronically ill anyways with or without PFS)? If you also get improvements very quickly there might be some crossed factors here.

1 Like