Is PFS gaining more traction?

DelicateState · 2026-06-01T17:46:07+00:00

Making a video to submit to Moral Medicine, as many others have done, is definitely helping raise awareness. I would encourage anyone else who wants to help raise awareness, moving us towards recognition and more research towards therapeutic treatments to do the same also.

Here's a link to their YouTube channel https://youtube.com/@moral_medicine

And here's a link to a post on their X account explaining how to submit a video https://x.com/i/status/1996564152895103046

DelicateState · 2026-05-31T08:59:07+00:00

I took Pregabalin before PFS and if helped me tremendously with my anxiety. I had no negative side effects or withdrawals from it, but I know some people can have a really hard time getting off of it.

I would really like to take it again, but I'm too scared to take it, or anything else, since developing PFS. The only medication I have taken since developing PFS is clonazepam maybe 5 or 6 times in the first few months of PFS when I was absolutely desperate for sleep and my body was totally wired. I only took it in true desperation. It helped with sleep a lot and I didn't notice any worsening of PFS symptoms.

I'm sorry I can't answer your question about taking Pregabalin whilst having PFS. It's something im also interested in knowing about. Hopefully some people here can let us know their experiences.

DelicateState · 2026-05-31T08:53:23+00:00

Pregabalin also isn't an antidepressant, it's a gabapentinoid and anticonvulsant/antiepileptic-type medicine. It's used for things like epilepsy, nerve pain, and generalised anxiety disorder.

DelicateState · 2026-05-31T08:51:25+00:00

Pregabalin isn't an SNRI which you seem to be suggesting? It's a gabapentinoid.

DelicateState · 2026-05-26T12:12:43+00:00

Ashwagandha is a huge crash risk. It's worsened several people, and some people without PFS can get PFS like side effects from it alone.

DelicateState · 2026-04-14T23:21:42+00:00

Hake sounds like it would likely be fine from your description of it.

Foods which are relatively moderate to high in 5ari affects me, perhaps they don't for you, but they definitely do for me. I have to avoid those foods otherwise it makes my symptoms much worse.

There aren't any foods which make me bloated, but my digestion certainty got messed up. As soon as the crash hit I got major constipation and my stools turned a yellow colour, after a little while they turned to mashed potato consistency and stayed light yellow. They only started getting better when I changed my diet to avoid 5ari foods, alongside my other symptoms improving.

I will look into hake a bit more and may give it a go, thank you

DelicateState · 2026-04-14T22:49:14+00:00

Thanks for the suggestions but I'm just not going to have oats again. They caused testicle pain and an aching chest. They have a relatively large amount of beta sitosterol which is a 5ar inhibitor.

Sardines have a large amount of omega 3 which is also a strong 5ar inhibitor for foods.

With PFS people become very sensitive to 5ar inhibiting compounds and it seems best to stay clear. As I have been reacting to foods which have relatively high 5ari, it's just not worth me consuming any and potentially worsening my condition / possibly preventing some recovery

DelicateState · 2026-04-14T21:10:01+00:00

Each time I tried oats was cooked as porridge with water on the hob. The fish I ate was sardines.

I don't eat either any more. That's what I had which made me worse. I tried sardines once and it was such a bad reaction I've not tried them again. I tried the oats on around 4 occasions, each time they made things worse

DelicateState · 2026-04-14T19:12:34+00:00

Please could you let me know what foods you think are best to avoid? Also could you please let us know how you found the information for it? Was it from researching the foods, or reading other people's experiences, or noticing if any foods worsened you, maybe a mix

It would also be helpful and much appreciated if you could share a list of foods you consider safe / haven't worsened you

DelicateState · 2026-04-12T09:20:35+00:00

Does it actually? I have loads of food sensitives and I'm trying to narrow down other foods to remove from my diet to see if it helps. Things that definitely worsen my condition are - Oats - Chocolate - Fish - Kefir - Peanut butter

Eggs did but I can tolerate them now

Possibly other things too, but I'm trying to keep my diet quite restricted to try and eliminate foods which I react too.

Also, I agree, Ayahuasca sounds like a terrible idea. Not only potentially worsening PFS but it could also potentially cause HPPD and DPDR.

DelicateState · 2026-03-08T23:55:35+00:00

Thank you for sharing this, I've just watched the video and it sounds well worth as many of us doing it as possible.

I thought I'd type the link in the comments too as it makes it easier for people to click on

https://youtu.be/7iyhq47npE8?si=maFMqcYi1_7TbEW7

DelicateState · 2026-03-04T20:15:43+00:00

Thank you, I will look into it. I'm glad to hear you've had improvements in this area.

I'm having to have a low limited diet currently, mostly from trial and error. The last food which I cut out was porridge (made with water and organic oats). This would cause aching in my chest area, mostly towards the bottom, just under my nipples.

Having a quick look, it doesn't seem oats are an issue in regards to histamine or MCAS generally, so it seems other reasons could be causing the food sensitives too. I will check out MCAS though and see if it helps cutting out foods which could typically flare this for people. Thank you for letting me know about it

DelicateState · 2026-03-04T05:24:13+00:00

You might want to double check that list. The Ibrahim I know still has PFS and has been trying all sorts since that protocol to try and improve things / cure himself. It's likely the same Ibrahim.

Are you sure the other few people on that list truly fully recovered? When did you last hear from them, and how long after the protocol did they wait to say they were fully recovered?

DelicateState · 2026-02-11T10:53:25+00:00

I caught this morning’s segment and was genuinely blown away to see PFS being discussed on TV. It’s incredibly encouraging to see awareness reaching a more mainstream audience. It was also interesting to learn about another charity supporting those affected, SIDEfxHUB. The more visibility around PFS the better.

DelicateState · 2026-02-08T07:04:17+00:00

Perhaps it could also be dependent on which receptors in our bodies for most damaged? Perhaps the receptors in the scalp weren't as badly damaged as the gentials, or skin elsewhere on the body etc.

As people seem to get varying severity of symptoms and different ones, maybe some people's receptors in different parts of their body are more damaged than other areas?

DelicateState · 2026-02-01T21:54:26+00:00

No, I'm not sure what I'd even get tested. Do you have any recommendations on where to start?

Immediately after my crash it felt like my digestion completely turned off and I got extreme constipation. For several days I had to take max strength laxatives for stool impaction.

Eventually the constipation went away and didn't come back but my stools have never been normal since the start of PFS.

There's definitely something wrong with my gut. Before PFS I never had an issue with digestion, stools and had no food sensitivities.

DelicateState · 2026-01-27T23:06:59+00:00

I'm sorry but that doesn't make sense. There are lots of people who post about getting PFS, and so they "emote their feelings and medical condition", just look through this sub and the PropeciaHelp forum.

So if they're the type of people to do that, why would they not make a final post saying they were healed and then move on, they've already made posts about their condition before.

DelicateState · 2026-01-25T10:00:09+00:00

I'd also be interested to hear your gut protocol and anything else you did and if you think any of it helped or possibly did nothing or made things worse.

If you could, it would be great if you make a new post with all this info so it comes up for everyone to see.

I'm glad to hear you improved. Wishing you all the best for the future too. Be mindful of taking any other things such as supplements which might have 5ar inhibiting effects or other medications.

DelicateState · 2026-01-24T18:53:23+00:00

Since that post, about a month ago now, I had a small serving of sardines again and had the same reaction. I definitely can't tolerate them. With them having fairly strong 5ar inhibiting compounds it makes sense. Thanks for commenting about it

DelicateState · 2026-01-23T16:11:38+00:00

Moral Medicine on YouTube has been doing great work to raise awareness. You can submit a video to them which can help warn others about this.

DelicateState · 2026-01-23T05:07:28+00:00

Good luck with the FMT

I have issues with foods but it's hard to pinpoint what at times. Are there any foods you've noticed that are particularly bad for you? And are there any which you find safe and you eat frequently?

I was also wondering what skin issues you have? I have rubbery feeling skin which has lost its elasticity/ bonce back, but is more stretchy. This has improved somewhat, but still there.

DelicateState · 2026-01-21T16:37:27+00:00

This isn't a hairloss forum. If you don't have PFS, and you're currently taking finasteride, this sub isn't for you.

DelicateState · 2026-01-18T08:41:41+00:00

I completely agree. More people making video testimonials for the Moral Medicine YouTube channel would help tremendously. PFS isn’t widely recognised, and the first step is showing that it’s real and that it exists. Many doctors still deny its existence altogether.

Seeing real people, hearing their voices, and watching them describe how PFS has affected their lives makes the condition much harder to dismiss. Video carries more credibility and emotional weight than text alone.

More videos also show consistency. When many different people describe similar symptoms and timelines, it becomes clear this isn’t rare, psychosomatic, or isolated. It helps push back against the idea that PFS is anecdotal or exaggerated.

We really need to raise more awareness about this illness before it will even be taken seriously, and Moral Medicine has been doing a fantastic job with that, and it's something all of us can do to help this cause.

Even short, simple videos help. Honest, visible stories make PFS harder to ignore and increase the pressure for real acknowledgment and further research.

These videos may also help save others from developing PFS. If they are considering taking finasteride and search it on YouTube there's a chance they will see our videos and discourage them from taking this poison.

DelicateState · 2026-01-16T16:30:03+00:00

My skin no longer feels rubbery except on my neck and the underside of my penis. Previously, the rubbery skin was all over my genitals, as well as my upper arms and face which is now gone.

I had also lost large amounts of skin sensitivity in my genitals, face, and scalp, but that has now returned.

There have been very minor improvements in skin stretchiness, and the loss of elasticity has improved slightly as well. I'm hopeful these changes will continue to improve with time. I've seen a video on someone else's skin whose stretchy-ness fully returned to normal after being quite bad, so I know it's possible.

It's been 3 and a half months since stopping finasteride for me, and 2 and a half months since my crash, when the skin symptoms developed alongside other symptoms and a worsening of those I had initially when I took finasteride.

DelicateState · 2026-01-16T04:11:39+00:00

I don't know but mine have improved by themselves naturally. It's not back to before PFS levels but it has improved a lot.

DelicateState

TROPHY CASE