Don't just leave

General Discussion
#1

I’ve been thinking about this for a while. There are many accounts here where seemingly without explanation, the posts just stop.

I’m aware of at least one person who posted extensively here, felt better, abruptly stopped posting and then we didn’t hear from them. …Until they crashed themselves and returned to posting.

Had they not returned, we’d have been left with some veiled hints at suicide and a miserable story that would have led to the conclusion that they must have killed themselves. In reality, had the guy not crashed himself again, he would be living life and presumably not a thought for everyone here.

Psychologically that is hard to handle, that it seems a number of people with your condition kill themselves. It has an effect on morale of people, it does on me. It’s something of a single middle finger to everyone who has tried to help you out, people who reply to your posts and messages and try to help you through the bad times. I get a fair number of messages asking for support and check in with people. I think I spent over an hour and a half writing to people this weekend.

On top of this, if you are feeling better and feel inclined to disappear, I would suggest that you are still vulnerable to developing this condition again. A routine prescription, dinner or treat could be enough to bring you back to square one.

It’s in your interest, even as a recovered person, to help out here. That could just mean checking in to let people know that it’s possible to get better or if the admins need help with things like the survey, or funding the next scientific study, or spreading the word, you should consider that helping yourself out. If you go to the doctor and they say you need treatment with one of the drugs that bring people here, it’s a certainty that you would have a bad reaction. Wouldn’t you prefer that we’d done the research already so an alternative might be available or that your doctor would at least have heard of the condition and know to not prescribe certain things?

As the mods and administrators here move forwards with planning projects, it’s becoming clearer and clearer that we need more help and for even people active in this community to do more to advance our cause. Don’t leave and please, step up.

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My "full recovery" from a 5ar inhibitor
#2

Thank you for the message @Greek. I would like to thank you for taking the time to bear my worried private messages over the weekend.
I am “lucky” to speak English and understand it so I can check out this forum, which at times helps but can be “scary” when new to the condition.
It has been essential for me to bridge the fin gap with my symptoms and put words on things which seemed unrea.
In France we have someone who is really involved in the PFS struggle and we are a small community trying to help each other.
We are more likely to see the most serious cases here obviously but I tend back up Greek’s statement: the more united, coherent, the better!

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#3

No need to say thanks (you already did!) I wasn’t looking for that.

When you’re feeling better, stick around and help out though. :slight_smile:

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#4

@Greek I feel important to be grateful because most people give their own time to answer and they have stuff to do. I feel people need to know you care for their time :wink: .
Recovery seems a long way for me and being in the initial stage of the condition I am just here for advice but hope one day I will give back and reassure new sufferers.
At least the forum helped understand that I might have been predisposed to sides. But I discovered this site too late… I think the other “fight” is just raising awareness on people who are told fin is fine, safe and risk-free…
Once this poison is off the shelf, we will win the fight!

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#5

Have you checked out the non-english language “subforums”?

It would be very helpful to other’s with this condition to reiterate some of you previous posts, possibly your member story, in the French forum.

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#6

I know this has been fielded before, but could we email any dormant accounts (who’ve not logged in for over two years say) and ask how they’re doing? And if they feel they could come back and update? Even if only one or two out of hundreds did that’d add huge weight and encouragement to the idea that time heals us some way or all the way. Well, we already know it can ofc, but one more recovery story is only going to be a good thing.

@Dubya_B @Greek is this something we can do?

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#7

It’s something that was done for the survey so I don’t think it’s impossible but right now I know the admins are too busy to add this job to the list. There is a lot of planning going on as well as other ongoing projects.

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#8

I know but I am on a French dedicated forum on a Facebook group.
France is pretty well on the front against Propecia as an association is acting hard to raise awareness.
Plus there are few French members on this forum. Most of them, as far as I know, get in touch with this association monitored by an amazing woman who sometimes is on the forum. You may know her she was featured in on the PFS podcasts.

#9

I always wondered about all the users who never post. I hear numbers in the thousands.

#10

Could you invite the people from your french Facebook group to join us here? It would be beneficial for all for us to assemble in one place and take part in the survey, etc.

As mentioned, you could use the French language section of the forum but we have a translation service on all posts (click the globe button) meaning anyone can take part anywhere.

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#11

I could try. From what I understood, some of them are lurkers, but the language barrier is a problem. From what I read on the French private FB group, some people are familiar with the forum. I have seen few French posts on the French section. I could try to reach out to one the guys who posted a message a while ago.

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#12

Please do, at least ask them to take our survey. :slight_smile:

#13

Could they take the survey in French or English?
You know damn Frenchies and languages ;).

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#14

You might want to consider moving that whole group here, en français. This would have a few advantages:

  1. facebook groups are not indexed on Google, we are. When someone has a problem, the person will usually first try to find some answers on Google, not facebook. In other words, it is easier to find this place than some facebook group.
  2. You can structure your content better. facebook is not designed for forum style conversations.
  3. Most importantly, we do not profile you like facebook does. If you participate in a facebook group, facebook will pick up on this and will add those signals to the profile they keep of you behind the scenes. If you are concerned about your privacy, using facebook to discuss sensitive topics of this nature is a very bad idea. You have no idea what they will do with the information they collect about you, and your medical problem. facebook is a business that collects and sells data. We are not.

As a foreign language user, you might have noticed the little globe symbol at the bottom of each post. Click it, and it will show you a translation of the post. This makes it easier for non-English speakers to follow conversations in this community.

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Where are all the Post Accutane Syndrome (PAS) / Isotretinoin sufferers?
#15

@awor just pm you.

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#16

@awor’s advice on Facbeook is very good. Propeciahelp is a platform by patients, for patients. We want to fix our collective medical problem.

Facebook hoard your data and do all sorts with it.

Take a look at The Creepy Line documentary.

Dangerous.

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#17

Good thread Greek.

I’ve never had a facebook page but it appears there are many post drug victim groups on there. Have we here indexed all of the finasteride/accutane/ssri groups on facebook? It may be worth having a presence on facebook as “propeciahelp” and messaging each group to try to convince them to sign up here.

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#18

Word!

People have expressed concerns regarding our survey and 23andMe initiatives, meanwhile we have absolutley no incentive to betray anyone’s privacy. Facebook does.

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#19

Hi there,

I’m maybe one of these persons you are menctioning in your post. In fact, you may remind me since we talked almost 1 year ago…

I’m David, and as you can see in my posts, I crashed really heavy on 2015… Since then, luckily I recovered myself 100% in april 2016 more or less and I lived a fucking amazing live until july 2018… (I had ups and downs thougt in those 2 years).
Then in july 2018 I crashed again, and again quite heavy… Not as bad as 2015 but almost. And luckily again, I recovered myself about september/october 2018. I recovered myself again, maybe this time I wasn’t recovered as much as the firste time… I mean, I was really good, had normal sex, normal erections, energy etc… But my sleep was not 100% fine, my libido sometimes wasn’t as high as is use to be… But generally I was fine. Sorry dude for not update all this to give you hope and energy to keep fighting this fucking sheet… But I guess you just want to keep going and get rid of all this nightmare…
I’ve been good actually, since 2 weeks ago again… :frowning: This time is diferent though, it has not been a big crash… Sexually I’m OK, can have erections and sex, but my libido isn’t high… Then my sleep is quite bad, energy bad… Feeling really strange again, really tired all day… My hair suddenly start to fall down as much as ever (since I quite finasterie in 2014 and had the crash, I’ve kept a head full of hair…)… Don’t know if this is still related with PFS, but I’m feeling really strange actually again… Anyway, I wanted to say that I recovered again from las crash in 2018, there’s hope… Now im not in my best but hopefully get better again… Anything I can help I’ll do guys…
Best regards.

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#20

Very happy you came back to tell us - thank you David! :slight_smile:

Did you take anything or do anything/any lifestyle changes even that you feel contributed to your recovery? Looks like some lengthy up-and-downs, but if I get to that same stage myself I’ll be very happy. I’m sure you’ll bounce back yet again of course.

Again, thanks for coming back to us! Get well soon!