IMO, PMing people and politely and respectfully asking them to fill out the survey would be more effective than spamming every thread with confrontational threats to take, and ultimatums about the survey.
Ok, the thing is that people have been asking whether or not PFS goes away for 15 years. They have been asking how to get libido back every week for 15 years. The answer is it doesnât. My recommendation would be to look at the recovery thread to see what you think. There isnât a great deal of utility in the forum discussing the same question 24/7 into perpetuity, is there? At some point it starts to make sense to ask different questions. For example, âwhat can I do to help us get different results than we have in the past?â
This is a specific element of the libido area. Some have said it comes back some said it doesnât. If youâre not interested donât read it!
And if weâre talking about spamming you need to reply to/deal with all the threads where people have replied to something written 10 years ago asking for an update first, before coming here.
Not a real one. Sexual medicine experts donât even know if genital sensation is separate from libido.
Iâm telling you I used to get a daily mental sexual urge that I could feel in my mind. This went, but about 6 months after most sensations did.
As far as I know no one has every gotten anything back. We are in the dark until serious research is performed. That didnât have to be the case, but few have focused on finding ways to move that forward. Certainly at this juncture that should be the overwhelming priority here.
Ok but one of those comments is an opinion not a fact (and to me seems to wallow in the negativity of a bad situation for the sake of it, which canât be healthy) and the other is worthy of a different thread but not specific to this. Iâm gonna leave it there on that as the point is clear.
Donât know what you are saying is opinion but anyway ruminating on topics no one has an understanding of isnât healthy. Hope youâre trying to find ways to contribute to getting research started. Thatâs the solution.
I think all vkg is trying to say is that while everyone is free to discuss things to death, perhaps itâs more prudent to spend more time thinking about what we can do as a group to ensure the highest chance of us getting out of this problem.
Also appreciate your contribution to the survey.
Thanks. Iâm just saying itâs not right to target one thread of hundreds for that discussion. Itâs poor form/trolling. This is the symptoms forum and I am discussing a symptom.
If you talk to a sexual medicine doctor, they donât even know if genital sensation is independent of libido. They donât know what the cause and effect relationship is, even. They know the two are often comorbid but wonât have the faintest idea which came first. So talking about different kind of urges and so on is just rumination at a much higher degree of granularity than even the experts have anything to say on. No one here knows what our problem is, how to fix it, or really anything else. Until we acquire some small level of scientific understanding of PFS anything like talking about different kinds of urges is putting cart before horse. Fair enough, I donât mean to tell you what you are and arenât allowed to talk about, talk about it as much as youâd like. Iâm just pointing out that no one here has any idea what the answer is. If we want to start having ideas, we need to start getting research started.
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Couldnât or wouldnât agree moreâŚGuys stop separating those things because no use to have sensation without Libido and vice versaâŚitâs either cure or curse and now itâs only curse
No use to you maybe. I feel differently hence this thread.
People posting on here are the small portion of those reading the forum whoâve even taken the time to sign up and hence actually are on your side. By hijacking threads youâre gonna chase them away.
We know we all have a problem hence being on the forum. Wallowing in it is counterproductive. And by that I mean going out of your way to use random threads to tell everyone weâre cursed.
Feel like Iâm the optimist here. I donât think the next 15 years need to be the same as the last. I think the opposite. All we need to do is focus on doing what each and every one of us can to get research started.
That was a reply to the previous post (not yours). You should either start a seperate thread to discuss the need for more focus on research or write to the people running the forum asking for every thread to be closed if it doesnât relate to research (which would by default include the entire âsymptomsâ section that youâre in).
I appreciate research is very important but even the most pressing medical problem in the world (coronavirus) is months or years from a vaccine so I am happy finding small wins in the meantime (which if you look at my joining post I have, and some others have).
Fully understand the condition is even worse for some than others but if I can accept that, I dislike that thereâs people on this thread making blanket statements on behalf of everyone (ie weâre either cured or cursed - my life is significantly impaired but not ruined at present).
The story of this forum is basically 15 years of people saying âThis is such a nightmare that I need relief now, so no point in doing anything for the long termâ and therefore no progress ever made, and no relief either
Iâve read enough on here to know youâre right about that but I think you can do both rather than one (and, again, itâs not the topic of this thread or any in this sub forum)
I dont think our generation will see a proper treatment or cure. I think we are the pharmaceutical martyrs who will be remembered 50 years down the line when these horrible drugs have been taken off the market
They shouldnât be on the market I agree with that
For brain dick connection,