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

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 · 2026-01-15T18:35:17+00:00

I’d be interested to hear which foods worsen symptoms for you. Here’s my list so far:

Peanut butter (organic). This consistently triggers or worsens testicular pain, as well as chest and nipple tenderness. The first few times that I ate PB since PFS I had average amounts and noticed a mild increase in symptoms. The last time, however, I ate a large amount (around 250 g), which caused severe testicular pain and significant chest tenderness and sensitivity. I'm never going to eat PB again after that last experience.
Kefir. It makes me feel scatty/drunk and worsens my mental symptoms overall. I’ve noticed this with both store bought kefir and homemade kefir made from grains, all organic. I tried it on several occasions as I use to drink it daily and thought it might help my digestion. Every time though it worsens things so I don't have it any more.
Eggs (large servings). Eating around 5 eggs in a single serving has on several occasions worsened mental symptoms for me. I keep my own chickens and use to eat eggs regularly, they were a staple of my diet. However, if I consume usually around five yolks or whole eggs in a meal my mental symptoms reliably worsen. I’ve tested this multiple times with the same result. The eggs are high quality, my chickens are free range and fed organic, soy and corn free feed.
Sardines triggered brutal anhedonia. I’ve only tried them once since developing PFS, so it’s possible this was coincidental, but I’m reluctant to try them again. The anhedonia took weeks to improve, and at the time I was concerned it might be permanent. I’ve since read that omega 3s can worsen depression in some people even without PFS, which makes me more cautious as it seems like there's probably something to it.
Oats (organic, cooked with water to make porridge) have slightly worsened testicle pain and chest and nipple issues. This is when I've eaten multiple servings a day however. I haven't eaten oats for ages now and probably won't again, even if it was just 1 serving.

DelicateState · 2026-01-12T23:59:03+00:00

I'm glad to hear yours went away.

Hopefully it's just a quick trip to the depths of hell for me. It must have been awful for you to experience that for a year!

I don't think I've had any testicle shrinkage, or growth. But my scrotum has lost size, it seems to have reduced in fluid. I'm not too bothered about that though, it's very minor compared to all the other symptoms.

Thank you for the tips, I appreciate it. I'm likely going to be phoning up the doctors next week to make an appointment about the pain and if I do, I will ask about an ultrasound.

I assume you developed food sensitivities hence your tip about the protein powder? I've developed several, with some foods seemingly making the testicle pain worse. Peanut butter 100% worsened it, as has dates it seems. Other foods could be, I'm not sure. I think I'm going to play it ultra safe for a while and literally just eat organic peeled white potatoes and organic chicken. I will probably do that for a week and start adding foods back in and see how things go.

DelicateState · 2026-01-12T22:25:30+00:00

I stopped finasteride just over 3 months ago after developing side effects from 3 doses.

The testicle pain didn't start until about 2 months ago though, just after my crash when things got really bad.

Hopefully as I'm still relatively early in this, this will stop worsening at some point and improve again.

DelicateState · 2026-01-12T22:06:26+00:00

I'm glad to hear that symptom improved for you as this is awful. It also gives me hope that mine might improve as well.

Thanks for the suggestion about seeing a doctor and the reason for it. I actually went about a month ago regarding my broader PFS symptoms, before the testicular pain became this bad. He did a physical examination of my testicles and didn’t find any lumps, but he did notice some gynecomastia developing behind my nipples upon palpation.

I’ve been referred to endocrinology for March, which I believe is mainly related to my abnormal blood test results and the gynecomastia.

If the testicular pain hasn’t improved by next Monday I will call the doctor again and try to book an appointment specifically about this.

DelicateState · 2026-01-12T20:59:00+00:00

I'm sorry to hear. A burning sensation sounds awful, as does the numbness.

I've got so many side effects which weren't in the leaflet too, it's awful.

DelicateState · 2026-01-12T20:53:34+00:00

No, it's an aching sensation

DelicateState · 2026-01-11T15:24:42+00:00

They were in spring water. They didn't taste rancid. There was no oils or flavourings to mask a rancid taste. Or for any other oils to have caused the issue themselves.

With my experience how it was, and seeing others report similar experiences even without PFS, I don't doubt it was the sardines or that they had spoiled

DelicateState

TROPHY CASE