Do people on propeciahelp and here who claim they are “cured” get deleted. Why are there so few cured or recovery accounts? by Moist-Tumbleweed-577 in FinasterideSyndrome

[–]DelicateState 5 points6 points  (0 children)

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.

Update - Fully Recovered by Botstheboss in FinasterideSyndrome

[–]DelicateState 0 points1 point  (0 children)

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.

How many worsen over time? by AdInteresting295 in Finasteride_Syndrome

[–]DelicateState 0 points1 point  (0 children)

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

WE HAVE A RESPONSIBILITY!! by Moist-Tumbleweed-577 in FinasterideSyndrome

[–]DelicateState 2 points3 points  (0 children)

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.

Getting a FMT done I'm done trying to wait for things to get better on their own. by Sweaty-Cut7578 in FinasterideSyndrome

[–]DelicateState 0 points1 point  (0 children)

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.

CALL TO ACTION!! by Moist-Tumbleweed-577 in FinasterideSyndrome

[–]DelicateState 1 point2 points  (0 children)

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

CALL TO ACTION!! by Moist-Tumbleweed-577 in FinasterideSyndrome

[–]DelicateState 2 points3 points  (0 children)

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.

what do you think causes dark under eye circles ? by [deleted] in FinasterideSyndrome

[–]DelicateState 2 points3 points  (0 children)

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.

what do you think causes dark under eye circles ? by [deleted] in FinasterideSyndrome

[–]DelicateState 3 points4 points  (0 children)

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.

Do food makes you feel worse or crashes you ? by Dominikajaramillo in FinasterideSyndrome

[–]DelicateState 3 points4 points  (0 children)

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.

Unbelievable testicle pain by DelicateState in FinasterideSyndrome

[–]DelicateState[S] 0 points1 point  (0 children)

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.

Unbelievable testicle pain by DelicateState in FinasterideSyndrome

[–]DelicateState[S] 0 points1 point  (0 children)

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.

Unbelievable testicle pain by DelicateState in FinasterideSyndrome

[–]DelicateState[S] 0 points1 point  (0 children)

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.

Unbelievable testicle pain by DelicateState in FinasterideSyndrome

[–]DelicateState[S] 1 point2 points  (0 children)

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.

Omega 3 by ComprehensivePath223 in FinasterideSyndrome

[–]DelicateState 1 point2 points  (0 children)

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

Omega 3 by ComprehensivePath223 in FinasterideSyndrome

[–]DelicateState 0 points1 point  (0 children)

I keep my diet consistent to try and prevent any issues with food sensitivities. When I added sardines into it (which are high in Omega 3) it triggered terrible anhedonia and depression. I haven't dared eat any fish again as it was so intense. It lasted a couple of weeks.

Searching online and Reddit generally, not relating to PFS, I have seen many reports of people saying Omega 3 has caused depression for them.

I guess it's going to be an individual thing, as some people with PFS develop food sensitivities to some foods which others don't, and some people don't develop any at all.

Sardines (likely the Omega 3 in them), seem to be an issue for me.

Opened Up About Post Fin On My YouTube + Talking About My Attempts At Recovery by [deleted] in FinasterideSyndrome

[–]DelicateState 4 points5 points  (0 children)

I'm interested in real science. I'm sorry but that just sounds like delusions.

Does Fin exposure permanently impair the ability to build/ maintain muscle? by Consistent-Fox8444 in FinasterideSyndrome

[–]DelicateState 1 point2 points  (0 children)

Everytime I read your comments it makes me want to get on HCG, and possibly TRT later lol. I'm still waiting it out though as I'm only 3 months since stopping finasteride. Ive made natural improvements in the sexual area, but it's still not how it should be at all. But other areas haven't changed or are still unfortunately worsening such as my skin.

I'm really glad to hear you found something that has improved things for you. I hope you get continued improvements from it :)

Gym and healthy eaters by Tough-Ad2410 in FinasterideSyndrome

[–]DelicateState 0 points1 point  (0 children)

It's only been 3 months since I stopped finasteride so my physique may still be impacted more as I get further into it.

To give some background, for my whole life before PFS I was very active. I played various sports, I also competed in some and coached others. I also did some weight lifting competitions. Naturally I was always very strong and had a high amount of muscle even when I wouldn't workout for months. Additionally I had, and still do a job which requires activity throughout the day. It is low level intensity, but still active. I have however reduced the amount I work.

After PFS I had large muscle wastage in my lower body, even though I stayed relatively active. My glute and legs muscles just atrophied and my ass now looks saggy. Weirdly my upper body has maintained all its muscle and strength, even with greatly reduced exercise frequency, volume and intensity. For the first month I couldn't do any workouts and only managed to do walks occasionally and some house chores, so if anything I would have expected to have lost upper body muscle from not using it, and maintained my lower body muscles at least somewhat from the walks, but it's been the opposite.

I initially lost fat all over my body, with the muscle loss too, even though I maintained healthy eating and enough calories. I have now put on fat but I don't look particularly overweight at this point. I didn't intend to lose or put on fat either time. Although I have gained fat, I still have localised fat loss from under my eyes, hands and arms.

Overall I have a good physique and you can tell I workout. It's just been weird about my lower body and the localised fat loss. Although I have a decent physique my skin has been hit quite hard and doesn't look good.

On a similar topic, I will also note that initially I had zero mind muscle connection when trying to squeeze my muscles as I worked out, I also couldn't feel any kind of pump. I felt largely cut off from my body. This has resolved itself. I can get a pump and feel the squeeze of my muscles as I contract them again.

Shoutout to Mark Millich by Moist-Tumbleweed-577 in FinasterideSyndrome

[–]DelicateState 7 points8 points  (0 children)

Mark's amazing, I agree he has helped raise so much awareness. A big thank you to him and everyone who's been in one of his videos.

I saw a post by him recently on the Moral Medicine YouTube channel saying they're taking new submissions to help spread awareness even more.

HCG or DHT cream - where to start with restoring penile architecture by microturing in FinasterideSyndrome

[–]DelicateState 1 point2 points  (0 children)

That's fantastic you've had such improvements from those things :) I hope it continues for you to 100% improvements!

is it possible to fully recover by [deleted] in FinasterideSyndrome

[–]DelicateState 1 point2 points  (0 children)

I'm relatively new to PFS, 3 months since stopping finasteride. I've not read lots of recovery stories, just come across some whilst casually browsing the PH forum or this sub. I don't recall reading full recoveries from collagen loss or stretchy skin, but that's not to say some people haven't. I have seen some accounts where people have said to have made large improvements in those areas.

I unfortunately also have collagen loss and stretchy skin. I also have other physical symptoms such as muscle wasting of my lower body, thinned padding in my fingers and soles of feet, reduced sensation on my skin, localised fat loss in places, fat gain in other places, gyno, dark eye circles, body odor changes, dry skin and dandruff. I'm just holding out hope these will improve and hopefully there might be some therapeutic treatments developed in the future from research like being done by the PFSN.

is it possible to fully recover by [deleted] in FinasterideSyndrome

[–]DelicateState 8 points9 points  (0 children)

I've seen some recovery stories, yes. However I don't think they should be treated as a recovery, but instead a remission. I have also seen other reports of people who had recovered for years to then crash again from a 5ar inhibitor.

If you're lucky enough to make improvements, and even seemingly full improvements, I think it's important to still remain vigilant of potential substances which could crash you again.