Please help I am suicidal
Hello
we are here!
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.
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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.
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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.
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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.
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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.
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I believe the forum has 7,000 registered users. They’re going to be taking new samples in a couple months!
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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.
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Yes the endless circle brings us down.
Can you point me in the direction of this information on the research? I find this site harder to navigate than the old “crappier” one.
BTW I did donate a lot to the foundation already, which was presumably “put to use” at Baylor, so forgive my sceptism. Is there another part of that mostly useless thing still to come out?
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please sign up to the PFS Network mailing list at the bottom of this page. https://www.pfsnetwork.org/
I will PM you the quarterly update that was sent yesterday.
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Things have changed, we have a new foundation who is fully commited to solve this.
We have a Youtube Channel which is now at top 2 of searchings
and we have already raised 130k in 6 months.
Please join us, we need you! Is really important.
Also, try to fill a pharmacovigilance report in your country. Crucial step.
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Have faith my friend. As a community we can get through this. Besides, the Foundation is really not at all of the same caliber as the PFS Network which is run by actual patients who are committed to solving this. Let’s stick together and all support each other to get out of this.
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Thanks guys.
Looking back on my second massive crash, I think it may have been triggered by taking quetiapine to get sleep, on top of everything else.
How long did you take it for and what dose?
Looking at the pharmacology of the drug, I don’t think anyone should use it tbh. Not even people without PFS.
From it’s Wikipedia page:
Despite being widely used as a sleep aid due to its sedating effect, the benefits of such use do not appear to generally outweigh the side effects.
Low dose for sleep.
I took it years ago and it helped sleep but gave awful sides, but when I came off my sleep normalised.
But when I took it on one off occassions in recent years for sleep, my eyes were ablaze.
I probably shouldn’t touch it again and it has probably fucked me up this time. I was in trouble anyway but I think when I added it for sleep I started losing facial collagen, which stopped then reappeared post crash.
Low dosages are supposed to act like anti histamines rather than anti-psychotic, but it probably still interferes with 3-ahsd or whetver the androgen process is downstream.
Fuck me what a mess. What can I use for sleep now?
Yeah don’t touch it again. I know not being able to sleep is fucking awful and after some time it gets unbearable. I didn’t sleep for more than a couple of hours for months, but now I sleep well again. I’m sure you can improve as well!
But one should be really careful with sleep meds in general. Better to try proper sleep hygiene and some physical exercise, but be careful because doing to much to fast will make it harder to sleep.
Antihistamines that work in the CNS shouldn’t be taken either, they will lead to dementia if used to often etc. All sleep meds are nothing but band-aids. Just like finasteride is a band-aid for hair loss.
One can try some magnesium and/or taurine BUT some people have crashed on it so BE CAREFUL if you decide to try it.
Didn’t realise how much better I was until all this. Probably 75%. Recovered sleep, brain fog, fatigue, severe depression, genitals were fine and could get horny at times. Got back some lost muscle which is obviously gone again. Look worse than before.
There are men who recover and a lot of it is belief and time, I kind of got lucky because maybe life was less stressful for me for a while. Once stress appeared everything fell apart.
Just wishing that last year I had come on here for advice when I crashed on ZMA. Dick went darker for the first time in a decade, still had libido following months though but insomnia, which I stupidly used low dose seroquel for, which might have compunded the problem.
Someone might have told me that zinc/zma was a 5ari then and I might have escaped, or at least the worst of it. Now I am back to ground zero. If I even just had sexual sides I could go on with life, the muscle mass loss and cognitive stuff is awful.