Why is no one taking the damn survey? Only 202 Fin surveys answered. This is a dead end?

Please forgive my desperate tone, I am in a panic.
I’m pretty new here, but how long has this survey been up? Why isn’t every member of this forum joining this survey? 202 people filled in the survey, I mean what kind of scientific conclusions can you draw with that low a number? Has everybody given up or have all these like 4000 members already committed suicide? Fill in the damn thing! Why on earth would you not?

I was actually recovering from a depression, and picking my life back up again. Therapy was actually going really well. I finally started caring about myself and the little things again after all I went through.
I’m not even sure I really had AGA, I never got tested for anything. I was just overly worried probably like I always am.
My GP carelessly prescribed me this absolute madness and in my vain stupidity I believed his words that the side effects would just subside after quitting. He was probably uninformed and I didn’t do enough research. I took 1mg for 1 month and now I am an 29-year old impotent zombified shell of my former self. If this corona crisis subsides the first thing I’m going to do is find an (neuro)endocrinologist with a specialization in disturbances of sexual hormonal/nerve systems, if such a person even exists.

I’m heartbroken and desperate and I’ve only been suffering from the whole thing for like 8 months. I don’t think I even have most of the mental symptoms. But the erectile dysfunction is absolutely killing me.
I have an appointment with my psychologist tomorrow and will talk about my erectile dysfunction for the first time. I can’t talk about it with anyone. If this thing doesn’t wane over time I can never have another girlfriend. I must keep secrets from all my closest friends and relatives to protect what’s left of my dignity and hide my insanely prominent insecurities and inferiority complex. My life is very likely over.

Even if you are dead inside just fill in the damn survey so the clinging people may have a chance! Please!

2 Likes

Yep. It’s frustrating to say the least. I think a large number of members here don’t understand the importance of the survey and don’t believe in the effect that it will have if we get a strong representation. What needs to be focussed on is showing them the difference it will make.

Even if they don’t believe in it, you’d like to think that they would want to complete it as a means of showing gratitude to the moderators who work day in day out and provide them with a platform to discuss their illness that they wouldn’t otherwise have. As you can see, that doesn’t seem to be the case.

There are a few of us on here who are very committed to recruiting new survey numbers but we’d move a lot quicker with the help of a few more members.

4 Likes

I will do it after 3 month since my crash

4 Likes

Thanks man. We appreciate it. :+1:

Lot of people on this forum are just depressed people. Only 202 are really PFS victims.

1 Like

Maybe you could send your results to the PSSD guy. Just let him know yours is PFS.

He’s already found commonalities.

IMO the survey is too damn long. I’m in the process of filling it out right but it’s so damn long it’s pissing me off. I’m sure that the abandonment rate is > 75%.

IMO it makes sense to have a short survey followed by a detailed survey. Surely getting some information from 10000s is better than quality information from 100s?

Stop asking all the variations of testicular feeling for all the timeframe before and after the drug. It’s just too much. Personally, I’m taking the time to answer it all out but it’s very tiresome and I don’t think the slight nuance between those questions will make or break us finding a cure for this shit.

1 Like

It needs to be that long to be scientifically credible. I couple hours of tedium is a lot better than a life of tragedy. You should definitely just spread it out over many sessions.

3 Likes

It needs to be detailed in order to hold any validity man.

1 Like

You couldn’t be more wrong.

Look, I took the time to complete the questionnaire FWIW. But OPs asking why is it not being completed? The reason is the questionnaire is extremely repetitive and we’re losing people in the funnel due to the length.

We’re all on the same side here. I also want more people to fill out the form so I’m just making (IMO) some valid criticisms.

2 Likes

Exactly bro, the questions have little variance and it always asks in "4 weeks before, 4 weeks during 4 weeks after " so much info to be missed with this 4 week interval bull.

Ok let me clarify that the questions are structured in the manner that they are because data in this format is what scientists are interested in. It’s long because PFS can affect people in tons of different symptomatic domains, and it’s meant to try and capture everyone’s experience as much as can be accommodated. No question or section is there just because.

Filling out the survey isn’t meant to be an experience that puts a smile on your face. It’s something that you’re doing because it can help you. If you can’t fill out a form that takes the average person here an hour or less if they do it in a single sitting, how do you expect the world to be sympathetic to your suffering?

(And for the members whose cognitive issues/depression are holding them back from filling it out, maybe try to fill it out over a while or with someone you’re close to)

3 Likes

My only concern with the survey is that I’ve had pfs since 2012 so I don’t remember nuances like 4 weeks before or 4 weeks after. I’m just worried I’m fuckin up the data

2 Likes

I had one episode of PFS like sexual only symptoms, and I want to say it was due to taking Oracea and Azithromycin, both antibiotics. Specifically Oracea.

I recovered after a few weeks and continued with a relationship. About a year later it slowly happened again.

I was still a functioning,mindful, social person until I took Saw Palmetto, then the brain fog, anxiety and 100 other symptoms happened.

Not sure if that qualifies me to take the survey.

Thanks for taking the survey, I see this as a reason to not take it come up a lot.

It is much better to fill the survey out with best guesses where people are unsure. Inaccuracy of reporting is factored into this and everything statistical you’ve ever encountered.

When we plot results on a chart having some people who are not giving the same answer does not harm the data when you consider 175 people all saying X but 25 people who are scattered into different places on the chart saying Y, Z, A, B or C. The 175 people with the exact same experience is the answer to the question.

The alternative is that we let people not take the survey without a word and slowly disappear without a sound. Taking the survey is the most important thing most people here will do.

Please help me by asking those who have been here 3 months but who don’t have a blue tick on their avatar to take the survey. Really, it should be a badge of pride to have a blue tick, and a mark of shame to not have one. Especially now as so many of us are staying home for an extended period. Time isn’t so limited.

Fill the survey out as a Saw Palmetto patient. There are places you can talk about previous substances in the survey.

2 Likes