I, like many others, suffer from side effects.
I repeat, it has been 10 years.
please delete this topic if you can
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And what have you done?
I understand the frustration. We all do. But we’re trying to uncover an incredibly complex issue through the hard work of anonymous moderators and forum members. Do you realize how hard that is? We aren’t even in control of the Baylor situation, so why are you blaming the community for this?
We have done plenty to get our situation uncovered, and we are continuing to do so. We’re working with researchers, journalists, and doing things on our own time with our own resources outside of our own busy lives. Ask not what the the community has done for you, but what you can do for the community.
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It is fair to have criticisms or be disappointed, but these conversations are much more productive if you highlight specific issues you think are not being addressed, or better yet have ideas or a plan on how to address them. Otherwise, your complaint just reduces morale and does nothing to advance things.
BTW, the B&W study didn’t say we were just depressed. It found neurological abnormalities in PFS patients, although I agree it wasn’t particularly helpful. Part of the scientific process involves exploring dead ends.
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Precisely. Constructive criticism with concrete examples of things you’d like to see.
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Your statement is far from true. Almost 40 publications have come out so far, many facilitated by the Foundation. These contributed to a better understanding of what is going on. The Foundation is not a supermarket, where you pay a few bucks and get a cure in return. If you were expecting that, then your level of expectation was wrong. This highly complex problem still needs to be better understood at a broad biological level, not just neurological one. With regards to donating, I am hoping that better funding alternatives will be on the table in a couple of months, compared to what is being proposed right now. See my thoughts here:
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Hi @airforlife,
Sorry you feel that way. I’m sure it’s frustrating to not see day to day progress. PFS robbed me of my life and I personally only feel “OK” when I am making progress on the issue. I work every moment I am able on this issue and have done so for years - @awor has done so for many more. The entire team here put countless unseen hours into coordinated work. Please take a look at the site via the waybackmachine prior to 2018.
Before that, a decade and a half had gone by with a large part of the patient community doing very little except engaging with or making the weekly “this, this, this therefore this, so take this, this, this” posts that still constitute a major part of patient engagement. Some won’t even take a survey (thanks for doing so btw). Therefore I think you have to be realistic regarding not just the complexity of the issue biologically, but the work involved in this 100% volunteer, unfunded operation that I sometimes feel is taken for granted. It’s a lot easier to look at a now thriving site and just say “ok, I have an idea, give me the wheel” than do this work - trust me. Simply being very disappointed something isn’t visibly happening right now is not, in my view, taking into account what was needed for something to happen. And, as you say, that something be useful.
This is why the survey is so important. I think there’s some expectation that everyone’s view of “what PFS is” based on their own symptoms, limited reading of the site, or guesswork is somehow enough to create a solid pitch to scientists who are operating at the level which entails capability of doing the real legwork here. We’ve put tens of thousands of hours into what we are doing and have needed to build a powerful and standardised illustration, irrespective of any theories, of what is happening to people here. Bearing in mind the limited funds of the community, we need to make sure we are working with highly reputable scientists with cutting edge tech to get the right things done, not simply “a study”. As you’ve mentioned, there’s one available to fund if you want that.
Regarding the topics on baylor: They were not really about baylor. They were just ending up as threads collecting far broader frustrations labelled with that word. Posters had commented that it was misleading for them when they were checking it hoping to see information. Those of us who are aware as anyone can be of the status cannot discuss it further than we have anyway, so the only answer to any question you have is that we have to wait for it and hope it won’t be significantly longer. But we are not “standing still” in the meantime, and as @awor says we hope to share a transparent opportunity for positive progress in the coming months.
Best,
Axo
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Be grateful for goodness sake. The mods on here work like dogs while you likely do absolutely nothing to further progress. We’re lucky to have them and you need to realise that.
Hi AIRFORLIFE, first of all, like everything, I can understand your frustration, the fact that when we suffer, the time is always too long … So what are we doing? What do you propose ? All initiatives, new ideas must be taken into account and more is needed, but no one can ignore the work already done, the complexity of each step, the functioning of the authorities to use or nothing happens, the deadlines for implementation. implemented, etc. The Foundation did a phenomenal job, others around the world helped to make PFS known, to change records, … And being heard, getting the syndrome accepted was crucial and took a lot of time. It is now done and even if many do not realize it, things move faster. It must be possible to imagine and understand the time required for each modification. Seen from the outside, it is certainly very difficult to achieve but as an example: for a new alert or change of instructions, it takes a year, an incredible number of emails, conference calls, … Everything must be validated by a multitude of services, people, so yes, these deadlines could certainly be shortened, but those responsible for this slowness are not those who work tirelessly to help you, they are elsewhere and you can also invest , turn your rage into action. I do not judge you, anger is legitimate but it must all lead us to advance this situation. Without the Foundation, the leaders of this forum, without the other groups, the other associations, we would all still be considered “crazy”. We must recognize that we are no longer there. We must stay united and face together!
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I always read your posts as L 
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I’m late to the thread and support everything Awor and Axo have said.
I would personally take (and have taken) the stance of doing what you can. If you have skills (and everyone has) please offer them to our effort.
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You are disappointed because you thought it would be easy. Its a very hard task even with great funding. We have little funding.
Think in decades not years!
If it was somehow possible to channel all the effort and money that people here have expended on misguided quick fixes instead toward research/a molecular level understanding of the problem then we’d likely have a cure by now. But few have the background to realize that they’re just bumbling around in the dark. I guess you could say it’s the Dunning Kruger Effect enabled by the widespread availability of incomplete information on the internet.
Basically, I think the community just needs to focus foremost on facilitating awor et als work by getting him more data and assisting getting the research funded as quickly as possible. If we don’t do that then none of us will have good lives and we will regret it forever. Sexual function is critical to having any intimate relationships in your life and when you get old those are all you really have. The interests of youth fall away and friends from youth turn their foci to their offspring.
We tried the pills, herbs, and diets thing for 10 years, and maybe there’s still potential there, but I think the pragmatic thing to do at this juncture is to put the highest priority on making research happen.
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Yes! Yes!
Let’s all get behind our projects. If someone has had symptoms for 3 months they need to fill out a survey. Report your symptoms to your local authority.
Make sure you’ve done everything here:
If you see someone here who hasn’t done these things, remind them - but be nice. People need to know how important these things are, but there’s no need to shout or to make them feel like they’re being shouted at.
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It would be good if we had a concise explanation of why PSSD, PAS, and PFS may be related, as well as what the utility of the survey and 23andMe data will be.
If we can convey those two things clearly to members of other communities, I think it might be pretty easy to generate a lot of interest in these projects.
The projects are great and the first big thing in years. In order to get engagement, I think we need people to know what they are for. Unless I am mistaken, that isn’t as clear as it could be right now. It might be best if the creators themselves could provide such an abstract? or introduction that we could go forth with and pass on to other communities.
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So to my understanding if it really takes a decade or even more what’s the point of donating to the foundation if you mainly suffer sexual sides like ED. My point is I already suffer a decade. I am not able to wait a lot longer or another decade. The question is for people who already have penis fibrosis and who have not that much of genital numbness or psychological /other physiological impairment I come to the conclusion that money is better invested Into treatments like p-shots, Shockwave,Ed pills or ultimately penile implants than living like a weird loner. I think many people including myself were very disappointed about the outcome of the big previous studies. There is no denial that they were influenced by Big pharma. I don’t want to discourage people to fund the studies but for me who already invested into those previous fraudulent ones my patience is over. And if the only alternative is an implant then so it may be.
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Working on a lot of that stuff, @vkg1. Like a dog, as someone mentioned, lol.
In regards to the survey, justifications are in both the FAQ topic:
and the following blog post:
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instead of an implant can you participate in the 23&me dna project?
its our own study so there wouldnt be any fraudulent stuff going on
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Sweet, I wish there would be an option to be in the position to say" instead". But realistically after 11 years living with PFS I think my smooth muscles are that much damaged that I can either do both (23 and me test and an penile implant) or just hope to wait untill scientists develope an oportunity to artificially breed new smooth muscles, which is an unlikely event in the next few years and specially in regard of the pace of the research (we still don’t know the root cause of our problems). So to me if I get the implant I won’t waste any more money for tests like 23 and me. Maybe an annual donation to the foundation, but not as much as I’ve already spent.
Don’t be afraid it’s too late for an implant. I have pfs for more than 16 years myself and went to two highly volume (+/- 100 implants ayear) docs myself. They both say i’m a good candidate for an implant, even with a 30 degree curvature to the left.
But try first the other things you mentioned and do a test for veneous leak.