Summarizing our experiences in academic-like papers

General Discussion
#1

There are a lot of useful information on this forum but very messy.
For my own purpose I started doing research, but found it is very hard because I do not know how to find a member’s profile (i.e. original page with story and symptoms). How can I access that easily? I tried the search function.

Also anyone willing to help? I need people who did/doing grad school. The way I suggest to go about it is for each person to do research on one topic/treatment.

For example, I would like to summarize all the information about progresterone but reading all memebers’ stories, looking at their symptoms, and summarizing how many benefited and not, what are the theories proposed,…
If this is well written I am sure we can send it to doctors/researchers and they will take interest in it. Every information is valuable.

I am a professor at a top school, I do research, unfortunately not in this area. But now it is a question of summarizing experiences, so no need for medical training to do that, just common sense.

Who is willing to help? There are many ‘short papers’ to write. For example:

  • PFS and progesterone: A summary of the experience of PFS forum members
  • PFS and T boosters: A summary of the experience of PFS forum members
  • PFS and Tribulus T…
#2

I agree. The info on this site does need to be consolidated somehow.

I could help. I’m not a scientist or an academic (I’m an engineer), but I do have experience in research and report writing.

I guess the problem is the efficacy of the treatments. People might consider it pointless since nothing seems to work. I’d like to see better write ups on the symptoms of PFS. To date, a point on the PFS checklist lists “prostate pain” and a portion of this website is dedicated to “The Prostate and Prostatitis” even though it has been established that those problems almost definitely lie with the pelvic floor…

#3

Good to hear Bens. Anyone else? We can split the tasks. We can right a full book on this, and a very useful one to scientists. When i told Irwig some people had success with progesterone, he was surprised. He probably did not take it seriously cause it is just a word of mouth.

I plan to focus on progesterone, unless someone else more knowledgable about endocrinology can step in. Here is how i plan to organize it:

  • summarize the typical use of progesterone by pfs sufferers: dosages, frequency, cycling, …

  • summarize the overall satisfaction: how many used, how many got better, how many got worse. This is a lot of tedious work as i have to go member by member and, based on their stories, rate their satisfaction from -5 to +5, where -5 stands for a very significant and permanent deterioration/set back and 5 is a permanent and very signficant improvement.

  • i will have an appendix where i list the names of those people with my stars. They can always contact me to change their stars.

  • summarize the theories behind the impact of progesterone on pfs sufferers, and whether and how it differs from that of healthy patients.

It would be great if someone can do this on Tribulus, or other pro T supplement, or aromatase inhibitors…even on testosterone, maybe like this do tors will stop prescribing testosterone to their pfs patients…

This effort will clearly help getting the word out and getting the public/researchers more informed.
I am happy to edit the whole thing at the end and take care of the expense of producing a booklet out of it if needed…

#4

Here is the ultimate problem. First, it’s way too selective with regards to treatments and there is no real imperical data. What I think is much more, and I have thought about doing this is providing more data on symptoms. Here is something I just learned for example, for many of us our bodies transformed overnight, we developed an actual type of stomach called a “pendulum abdomen” where visceral fat is stored at midsection. Just information like that is essential. Or how about most people developed left side testicle, or left side abdomin pain etc. Or the obvious that our thyroids are not functioning properly despite most people having perfect thyroid numbers. These are all clues that are not found in any literature and they are more objective then treatments

#5

Finatruth

  • it doesn’t have to be this or that, it can be both. I agree on the importance of collecting a more exhaustive list of symptoms. I had a bit of love handles, and i am thin, but this is no surprise for someone who is suffering from ‘symptoms’ of low T but not low T.

  • regarding treatment. I beg to disagree. Most endos are still giving pfs sufferers T shots. Are you kidding me? Just collecting the number of people who used it and reported and showing the percentage of people who did not get better or got worse would be VERY interesting. I would personally send that paper to Irwig who is still prescribing T…also he does not believe anyone recovered…

  • as for YOU sir: didn’t you say somewhere you almost recovered, or at least made great strides…are you the one who no longer have numbness? A normal looking and feeling member is something i would kill to get. how did you get there? I believe you mentioned a treatment. This just highlights the importance of summarizing the info on treatment here.

anyone interested in helping?

#6

Irwig doesn’t believe in the recovery stories or he hasn’t heard of them?