Seeking help again after years

Member Stories
#1

Hi guys, I am late 30s, took finasteride, and a long term sufferer for around a decade. I used to have a profile I mainly lurked on but wanted to make a new one.

I had a bad crash initailly and all the sides, mental and physical. However after a couple of years my very bad insomnia went away, and my penile numbness/shrinkage reverted to near normal. I still had bad PFS, but for years I no longer had fatigue, insomnia, bad mental sides and was able to masturbate to porn if I wanted to.

Sexual
[ -x ] Loss of Libido / Sex Drive
[ -x ] Erectile Dysfunction
[ - ] Complete Impotence
[ -x ] Loss of Morning Erections
[ -x ] Loss of Spontaneous Erections
[ -x ] Loss of Nocturnal Erections
[ - ] Watery Ejaculate
[ - ] Reduced Ejaculate
[ - ] Inability or Difficulty to Ejaculate / Orgasm
[ - ] Reduced Sperm Count / Motility

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

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

I had a bad crash initially but after a couple of years I managed to escape the insomnia, fatigue and brain fog but the sexual and physical sides remained. However, I had also managed to get size and sensitivity back downstairs and could at least enjoy masturbation if not sex.

This calm period of livable syndrome continued until about three years ago, I had stress at work and at home and started getting bad insomnia again. This lasted a few months and lingered after I removed the stressors. In 2020 I actually made good progress again, thanks to zma glycinate I got a near normal sleep and started doing HIIT during the lockdown which made me feel fitter than for years, even pre pfs, though I didn’t improve my physique a great deal. The gyms were closed which didn’t help that.

Something happened in 2021 and I don’t know what, but I crashed badly into four hours sleep, which soon became five or six with green tea and iuprofen required. I think the ZMA had lost its effectiveness due to constant or near constant use, plus during that last wretched winter lockdown I was probably not looking after my health so much. I used to walk a flat, relaxing nature walk every day which in retrospect did wonders for my cortisol, but it got closed and instead I walked a big hill every couple of days which was too taxing. I also masturbated too much, something that I could actually do in my long years of comparative calm, but this time it seemed to crash me. Also, I almost forgot to add, after years when I still had ED but near normal size and sensitivity as well as some libido, all that was lost and I returned to the original post crash shrinkage.

Since then, I have struggled with insomnia of varying degrees, towards the end of last year it became manageable with certain supplements, but since February I am again struggling to get six hours. I fall asleep at 11ish and wake up around 5. Sexually I am dead.

For years I barely looked here having been a lurker before, now I am desperately trying to find out if anyone has been the same and got out of this hole. Not even recovery, just proper sleep and easing of sexual sides. I can say for sure that in the last year fapping has been my downfall. Also, too much physical exertion seems to worsen things in the context of bad sleep, even just walking say 15k steps a day every so often.

Looking for help and suggestions. I am considering a low carb diet and lots of stress reduction primarily, also hcg (I tried TRT twice with minimal results but no damage either). However I am reluctant to mess with hormones in this fragile state.

I suppose the only consolation is that I know it is possible to dig out of the deep hole of the initial crash, but it is also pretty devastating to be back with severe sides once again.

1 Like
We need to warn people about antipsychotics
#3
#7
#8

I had a crash after ~20 years post-drug involving terrible insomnia, and if it’s any consolation, I did eventually improve greatly from it over the course of a year.

3 Likes
#9

Thanks dubyaB.

I can say for sure that fapping makes things worse, so I will do no PMO like some have mentioned working. In my batter days it actually never made a difference, but now has a clearly detrimental affect of more than once a day or every two days. That’s if I’m lucky, as sometimes I just can’t get any life in it.

If any one can recommend a sleep solution other than ZMA and the usual calming herbs, I’d be grateful.

Also feels like I have suffered subcutaneous fat loss around the eyes, and forehead since another mini crash, I think it got better before but this is still concerning.

I also get cold hands and feet at times, especially after orgasm or if I take a vitamin or mineral. I think zinc sadly now has this effect despite it being reliable for years. Even androgenic foods like chicken now can do this at times, whereas during the better baseline years I would get libido and some spontaneous erections. I hope my response to androgens isn’t that it becomes a negative rather than just limited or even positive.

I have read the story of andraas and he has similar sexual sides, also seems to have climbed out of it through gym and diet so I will try that. I also feel physically weaker now.

1 Like
#10

Sleep is still bad without drugs. Last night I tried melatonin timed release 5mg and still woke up at 3am.

I took seroquel and phenergan. The latter seemed to crash me as I woke up from a six hour sleep with shrinkage, zero life in penis. I take seroquel for reliable sleep, it gives nocturnal erections but often makes me feel deeply hungover for much of the day.

I had two mini crashes this year. At the start of the year could sleep 7 hours, then it collapsed to five, now the current crisis since April, since when I have also lost facial collagen (this happened before but returned somewhat) and have wrinkles at the side of my eyes, and I probably get four hours sleep unaided.

I still don’t really know what caused last year’s crash after years of good baseline, but not cycling ZMA seems the main culprit. I also find that zinc seems to be damaging now, as if I have downregulated 5AR or something. Masturbation is also another big culprit, whenever I do it more than once now I get red marks on the foreskin and shrinkage. Joints creak and my muscles feel weaker now. Alao I seem to get dry lips?

My mental state is not bad considering, but I’m obviously worried. What has happened reminds me of what happened to awor with milk thistle.

Really sucks because for years I had PFS but slept great, could do what I wanted and noithing really crashed me. I had little crashes over the years with sorghum, nizoral, methyl b12 and perhaps the odd t booster, but any issues resolved very quickly. Drank alcohol and if anything it gave me libido.

I don’t know what to do other than take seroquel for a short while and pray my sleep improves.

1 Like
#11

This piece of shit condition needs to be cured. I fucking hate this syndrome with every fibre of my soul

2 Likes
#12

So I am having a horror crash similar to the first one. The problem was that since April I kept taking zinc not knwing it was harming me so much (had worked well for years). Also stupidly experimented with another ZMA pill and this screwed me.

I put it all down to stress which was real in April and didn’t help, but it was the zinc. And finally the ZMA.

Seem to be losing muscle again, severe fatigue and insomnia. I don’t want to go throiugh the psychiatric care system again but I am alone with this. I don’t want to die because I hope I can get better, I did the last time ut it never resolved. But it took a long time, and I am now middle aged.

I can’t believe a supplement could do this or at least one which helped me initially. I don’t know what to do.

2 Likes
#13

I’m sorry to read you are suffering badly after many years of what sounds like a manageable situation.

I’ve not been dealing with this problem for long in comparison, but I did have horrendous sleep issues for many months. These seemed to get much better around the time that I started taking 3 grams of Glycine and 400mg of Magnesium glycinate right before sleeping. I can’t directly attribute the better sleep to them, maybe it was just a coincidence I began them as my sleep naturally got back to normal but it might be worth trying if you want an alternative to drugs. There are studies which indicate they can be helpful for sleep, but obviously they aren’t nearly as powerful as meds so might not do much for you but I thought I’d share anyway.

1 Like
#14

Hi bro,

Be sure to also report your symptoms of pharmacovigilance

I leave you the link

2 Likes
#15

Wasting muscle from my ass and thighs because I was taking a supplement you can get in any health shop. Fuck my life man.

Wish some cunt could have warned me about zinc being a 5ari when I originally posted, then again I never mentioned I was still on it.

1 Like
#16

Please help I am suicidal

#17

Hello

we are here!

#18

I’m so sorry you are suffering this much right now. You said in the original post that you had a bad crash but managed to improve somewhat over the next couple of years. If you were able to do that once, perhaps you will be able to do that again and see improvements over the next months and years.

There is real hope for our community now which, reading through the forum, strikes me as materially different to how the situation was a decade ago when you first crashed. We have world class scientists actually interested in developing a real understanding of our condition and the PFS Network have assurances of a working relationship with them- it doesn’t sound like our community will be left in the dark for years in the same way as previous investigations. You are a young man still in your 30s, I believe a treatment can be available in a timeframe that will allow you to enjoy decades of a happy healthy life on the other side.

Please try and stay strong and just do whatever is necessary to get yourself through each day. We are all in this together and I believe we will all get out of this together with some more time.

5 Likes
#19

Thanks espresso, but if you had told me a decade ago what advances we’d make in research by 2022 I’d be deeply disappointed.

I’d have thought by know there would have been a successful lawsuit at least, even a few million for research. Instead just small out if court settlements.

I’d have thought that Baylor thing would have appeared by 2015 at the latest and been much more decisive about the disease’s mechanisms.

I’d have thought that we wouldn’t have people getting excited about personal youtube stories, brave as they are, getting 10k views, a decade after there were segments about this on CNN, Don Lemon, BBC, ITV This Morning etc…

And I just read about the latest study crowd funded here and see it will take “a few years”, so forgive me if I can’t get that interested.

The truth seems to be that there isnt that much to be optimistic about in getting anything done about this in the next decade. I’ve already lost one in many ways and now back again, fucked. I’ve just got to hope my body can get back to a decent level again, I was fortunate going by some experiences it did before.

4 Likes
#20

The Baylor study delay was unfortunate but we can’t make predictions for our current research effort based on Baylor. The researchers we have now are not just interested in doing one study, they are genuinely committed to solving this issue and they are experts in the realm of prostate cancer and the androgen receptor. This is a vastly different equation compared to the Baylor dynamic.

In terms of being disappointed. Well, if more patients got involved we would be making a lot more progress. It’s impressive what the network have been able to achieve with just 80,000 euros. 80,000 euros in respect to scientific research is a drop in the bucket. The study was supposed to cost 300,000 euros but the researchers are so interested in this condition they are only charging for sequencing. So far, only 200 individuals have contributed to research fundraising. 8 of these individuals are my friends and family. If just half of the registered users (3,500 people) in this forum committed 100 euros a month we would have 350,000 euros every single month for research. With that I can promise you there would be little room for disappointment.

Similarly, if thousands of patients did the podcast this issue would look like a public health emergency and would be practically impossible to ignore or dismiss.

Whether we end up being disappointed ultimately comes down to us. There’s no point throwing in the towel and not taking action if you plan on sticking around with this condition.

3 Likes
#21

How many active members do the forum have? Either way I thought it would be more than 200 that donated so far.

Are you involved with the study? Wondering if they’re going to take new samples or not.

1 Like
#22

Take a lesson from me. I didn’t have obvious mental symptoms (rather, sexual ones). However, by worrying about and researching my PFS intensely (lockdown / isolation / home office didn’t help), I gradually got so anxious that I ended up with very severe insomnia (3 hours of sleep aborted by an anxiety attack) and my sexual symptoms worsened a LOT (penile changes). In hindsight it was a self-fulfilling cycle, entirely avoidable, and dangerous because I was effectively rewiring my brain into anxiety.

I was able to break the cycle after 2 weeks and get back to normal by leaving my environment and going on a 3-day trip to visit my family, absorbing their love, being in nature, and not giving myself a chance to worry.

The lesson here is that if a mentally super chill/resilient grown man with no mental PFS symptoms can put himself at risk of developing permanent PFS-like mental symptoms simply by worrying too much… please break the cycle like I did. You have more control over your fate than you realize.

2 Likes
#23

I believe the forum has 7,000 registered users. They’re going to be taking new samples in a couple months!

1 Like
#24

But in 2021 when I throated the ugly poison internet have been full of warnings about finasteride long lasting side effects. Only one check had been enough to be confronted with all the reports about the dangerous poison.

But checking the internet for every shit, people believe in medical doctors integrity and think they get informed by the leaflet.

That have been the great Mistake from all of us taking the poison after 2012 when persistent ED had to be announced on the leaflet. But they used such a gaslighting missinformation saying ED will solve in most cases after a time of usage. And under not counteble: Can hold on (for two weeks or for ten years?!) after quitting in some anecdotal cases. It’s a double denying. They don’t say can persist for months or years.

And the research have been done, without the PFS foundation nothing would happen. So Baylor study is the start for more research, starting up this year by the great engagement of the PFS network. And yes I think it takes years, but it gives some hope for the very young ones .

Yes the activ community is very small. Most victims try to cure themselves with the same hormones and protocols for decades now.

1 Like