Calling for Study Participants for First Molecular Level PFS Study EVER ********************

[b][Size=4]UPDATE FROM AWOR (Sun. SEPT 18th) – PRELIMINARY STUDY RESULTS:

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UPDATE FROM AWOR (Sat. July 9th):

Here is a quick update:

Last Thursday we successfully completed the first round of 5 biopsies at the university hospital location.

The scientist team is super motivated and I had a good talk with them (I have a meeting with one of the other scientist teams this afternoon, there are three in all).

Despite being circumcised, I went for it as well. Even in my case, being completely circucised (zero foreskin), it was absolutely no problem. They took a minute sample of my skin on top of the penis. You can almost not see it and I didn’t feel anything (no pun intended), not even to this day. The surgeon assured me that I won’t even know where it was a month from now. It also went super well for the other four guys.

[b][Size=4]The scientists would like to get another 5 additonal biopsys for the experiment (original number was 5-10). This would give the study even more power.

So we are calling for another 5 guys to join us either on the 14th or 21st of July at an European location which can be reached via direct flights (inluding Ryan Air).[/size]
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The biopsy went so well me, that even circumcised guys can participate if their skin is not super-tight. Please pm me if you have any questions about this.

At this point I would like to thank the four other brave guys for having trail blazed this first round: Oh Bloody Hell, Mario, Gargoyle and 40.
You guys are heroes and deserve the greatest respect from all members of this forum. Many, many thanks. I would in particular like to express my deepest gratitude to 40 for all the excellent people relation and organisational support that he has provided which helped make all this possible in the first place.

Many thanks also to Mew and other members of our organisation, which are silently and relentlessly working in the background since years to get this ship moving.

So let’s keep on going and get this thing off the ground. Please PM me if you can join us either on the 14th or 21st.


ORIGINAL POST:

NOTE: Severe penile insensitivity/foreskin numbness (loss of sensitivity to touch) is a prerequisite in order to participate.

I have exceptionally good news for everyone. After over a year of intensive work, I am glad and proud to announce that our day has finally come.

For the first time ever, we will be starting a series of molecular level experiments in an attempt to understand what has happened to us.

These experiments are not happening sometime in the future, they are starting NOW. We have a very clear idea of what we’re going after. If we succeed with these experiments, this summer will catapult us light years ahead from where we stand today in terms of understanding this problem.

A consortium of scientific research organizations will be working on this. A main reason why it has been possible to capture the attention of the involved scientists and institutions, is that this problem, if it turns out to be what we think it is, has relevance beyond anything that you can imagine at this point. In the best case, the scientific effort related to this phenomenon will switch into overdrive, after over a decade of immobility and lack of direction. I must also mention at this point, that getting this team together would not have been possible without the ice breaking publications of Dr. Irwig and Prof. Traish (and the participation of many in this forum).

A first, large scale experiment is already underway and a number of you will be contacted about this shortly. In a next step, we are now starting a pilot experiment with the objective of verifying a core hypothesis regarding this problem. We have just received the green light for the pilot study and want to start with it ASAP.


What we need now IS YOUR HELP.

[Size=4]To complete the pilot, I need:

  • 3-4 men who are prepared to supply a very small biopsy of penile skin.
  • The optimal candidate for this is NOT circumcised and located somewhere in Europe, however CIRCUMCISED men and those living outside Europe can also participate
  • Severe penile insensitivity/foreskin numbness (loss of sensitivity to touch) is a prerequisite in order to participate.
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The biopsy is minimally invasive and will be conducted by a surgeon specialized in urology. As this is a pilot, and we don’t have the full funding yet, you will be required to travel to a destination located in Western Europe at your own expense. If you are located in Europe, you can do this in a day trip.

If we ever want to have a chance of finding a treatment which is effective on a wide scale (meaning that most people will benefit), we need to uncover the root cause of this. This is our chance, to find this out NOW.

Ideally, we would like to start with the pilot next week, in order to get the core work done before the summer holidays. If you would be available to travel and spare a day of your time on short notice, please send me a pm. I can then provide you with further details about location, proceedings, details about the biopsy, etc.

I cannot disclose any information about the experiments to people who are just interested to know what’s going on, so please don’t pm me about this if you’re just curious.

Thanks in advance for your cooperation and participation.

God bless you awor and mew for all of the hard work you have put in to finding a cause for all of our problems.

Ditto! Good luck!

Wow! Great to hear!

My finasteride-impaired imagination can’t conceive of the relevance, you say? :laughing:

excellent job awor, i would surely participate if i were in Europe. cheers

awesome… only thing is I hope they are approaching this realizing that the condition effects not only sexual function but male physiology as a whole including the brain.

either way a big step in the right direction.

Thank you awor for all your hard work. I’d volunteer myself if i didn’t live on the other side of the world… also i’m circumcised.

This is really important. Please if you can afford this go! This year we could make real progress.

Great news and well done! Much thanks to Awor, Mew and all the mods for the work you do here and behind the scenes.

And a huge thanks in advance to those who step up to be a part of this exciting new area of research. As 19 said, this is extremely important milestone for this community.

Awor- Would you consider those of us with shrinkage and penile pain as well for this experiment or strickly those with just numbness?

I wouldn’t rule this out, but would prefer to have consistent samples for the pilot. But given that I have only received one useful reply so far, we might have to take what we get. Agreed, the post was less than 24hrs ago, but I am still disappointed over the lack or response so far…

This has more to do with our organisation or lackof. Most men with PFS drift away from the site after a few months or at least don’t appear very often anymore, beacuse there doesn’t seem to be any reliable treatment yet, and no one wants to think about this all of the time. They certainly don’t log on every day. I have pm’d with tons of guys like this. Maybe if guys were forced to give a primary e-mail address and could be contacted straight away the response would be more impressive. It is our lives we are talking about, after all.

I’m a bit confused. Do you hypothesize the same cause for shrinkage is the same cause for numbness?

Awor,

Thanks for all of your work bringing this study to fruition and thanks to Mew for all of your work behind the scenes.

Do you plan on explaining your Specific Core hypothesis of the study at some point soon or is this information not going to be revealed for some reason?

well, most of us are not in europe… nor uncircumcised…

Hi im in Germany…and meet all the prerequisites…ill send a pm also…

Ironically I AM in europe but got circumcised BECAUSE of effects on my penile skin induced by finasteride (excessive wrinkling, loosening and stretching of the skin, further aggravated by (although non-excessive) masturbation). I am even going to get circumcised a second time because the penile skin has wrinkled, loosened and stretched again. But I have to say that the circumcision further aggravated the “penile numbness” thing, as my stupid uro wasnt able to do a “high and tight” (preserving most of the inner, mucous foreskin) as I requested. So the damage has been done anyway.

We will talk about the hypothesis and the results as soon they have been submitted for publication. So the sooner we get a few people to participate in the study, the sooner we can get the results and publish.

This is fantastic news Awor, thanks for all your effort and to Mew as well.
But I am also circumcised, had to do it when I was younger as foreskin was too tight and would not retract making penetration impossible/excruciatingly painful. Otherwise I would be the first in the queue.

awor,

Good to see that you are working hard to bring our issues into a lab. But I have two doubts about this particular study.

First doubt:
For many of our members, penile insensitivity is a fluctuating side. Furthermore, a few recovered members do not suffer from it anymore. These two facts suggest that it is not caused by some irreversible molecular change, but to some reversible hormonal problem.

Second doubt:
I’m no expert at all, but I think that some molecular change may happen if the person lacks androgens. In other words, the result of this study will be different if you take a castrated man or a healthy man (please, correct me if I’m wrong). Therefore, one possible outcome of this study may be that the insensitivity is caused by out-of-whack sex hormones, which is true for most of us. In order to achieve interesting results, I think that the participants should demonstrate that they have penile insensitivity even if their hormones are within a decent healthy range.

My penile tissues went numb within 3 days of starting drug and have never recovered 6 years later. Penis still feels insensitive to touch, no longer gives pleasurable feelings in response to tactile stimulation, foreskin and scrotum feel like rubber, etc. It’s as if your dick has been injected with anesthetic, especially on the underside.

We’ve had guys tested for penile sensitivity and some Urologists have noted absent foreskin nerve response to hot/cold stimulation, pain etc. We also have had reports of penile fibrosis and calcifications. This is in addition to the penile/scrotal shrinkage and constant retracting of both into the body, almost to pre-pubertal sizes.

For many, this is not some fluctuating side effect, it is a real physical response to androgen deprivation in tissues where Finasteride was doing its job (inhibiting 5AR2/DHT). If your sensitivity waxes and wanes on a whim and is not persistent, count yourself lucky.

On a final note, this is not the time for “doubts” based on conjecture, it’s the time for ACTION. You can theorize all you want but without testing, nothing is provable.