PFS study recruitment

General Discussion
#1

If you are willing to participate in either the Brigham and Woman’s or Baylor study, please PM me your name and contact information, I will forward it to the appropriate people. If you need help for traveling expenses, we will try to figure something out.

I hope you all understand that if these studies are not finished, the doctors involved in PFS research will give up, and then we’re all on our own. They are taking their time and using their university resources to help us.

I’m also thinking that the people who will start learning and receiving therapeutic treatment will be those who are participating in the studies, not the people who will jump on the gravy train after the studies have been completed. I’m thinking of talking to the PFS organization and proposing this, its only fair that those who participate be the first ones treated. It is most likely they will do this anyways because they will have the health information and all the appropriate testing from the individuals who participated. And I say treated, because there is a lot going on (as you can see from the research publications popping up without you guys knowing about them). Don’t think the doctors will go out and say take this supplement or whatever, they are going to need to tailor a hormonal treatment for us.

They need to finish the BWH and Baylor study because this is paving the way for another study that is looking at therapeutic treatment that you guys don’t know about, so get to Baylor and BWH immediately.

#2

I appreciate your effort to organize things, dgreene. I am willing to help when it comes to covering expenses. Let me know!

#3

Some comments suggest that people are not even aware that recruiting is still on-going. Since many people visit this forum infrequently, maybe a reminder should be sent out on the forum’s mailing list or any mailing list the Foundation might have.

#4

This would be unfair to those of us who tried to organize a trip, but were deemed ineligible by the foundation due to factors outside of our control. People need to be more involved with the studies, however.

#5

If you guys think I can be helped with expenses, I would definitely participate with one of the studies. I’m 34 and otherwise in excellent health besides sexual/mental sides from this evil drug. I think I would make a good specimen for a study. I went to the mayo clinic and they gave me a clean bill of health after thousands of dollars in hormonal/cardiovascular tests. I thought if anyone could help the mayo clinic could help. I was wrong and now i am just left in debt. Thank God I have a girl that has stood by me for 7 yrs while I suffer with this plague.

#6

Please apply. We need to know how many people are ready to go. Then we can start to do something about (financial) obstacles. Please sign up and then we will see!

Thank you

#7

Yes, apply everyone! Imagine we can get down to a handful needed. We could then target our efforts on finding them and doing whatever it takes to convince them.

#8

I tried to apply for the studies back in November. I was even looking at flying myself to Boston but they told me that they would be completed by Decemeber. I don’t think I would qualify now that I have started Hpyocyclists progesterone experiment.

#9

I got in touch with the PFS Foundation yesterday and got the ball rolling for participating in the Baylor study. I’m sure there are other guys like me on here who have the means to take part in the studies but were assuming that someone else would do it. Now is the time to take personal responsibility and take action.

#10

This is what I don’t understand. We both volunteered and didn’t progress because you were told you weren’t needed and I was told I’d have to cover costs myself - which I just can’t as I live in the UK and don’t have private insurance.

Obviously we need effort on the part of PFS sufferers but in addition those administering studies need to follow up on guys who express an interest.

#11

Hi, the best thing would be to re-apply. I realise that you think you may be disqualified. But you won’t know this for sure unless you re-apply with your current circumstances. It would be excellent if you could please re-apply.

#12

I have received e-mails back from both studies. I’m going to contact the PFS foundation to see about expenses.
ITS THAT EASY LADS!!!
EVERYBODY DO IT!!!

Can you imagine they find out what is going on and they manage to treat/cure it???
Think about how HAPPY you would be to know that you had this RIDICULOUS SYNDROME that you thought would end your life, because I know I’ve thought that, and they figured it out ad they started curing us one by one.

It would literally be like walking into heaven and you all know this.

GET ON IT!!!

#13

We need to keep this thing moving… How about a PM effort - private message to everyone on the forum asking to please apply for the studies, along with relevant contact details to do with expenses. Since this seems to be a major obstacle.

The other major obstacle is unwillingness to participate due to belief that a self-designed “protocol” will deliver better results than available from two major US medical institutions. For this, the wording of any private message will need to address this.

Could Mew give a verdict on whether this can go ahead - a private message to be sent to all on the forum?

#14

Surely, there is a mailing list including every forum member. I received two or three messages from Propeciahelp during my time here. I think it would be a good idea to sent out an reminder to all members, because there are many members who do not visit the forum regularly and have no idea that recruiting is still on-going. I hadn’t visited the forums for months and had no idea.

#15

The problem is that the Foundation and this forum are separate, and for good reason. That said, I don’t see a problem with anyone who isn’t involved with the foundation who wanted to take the initiative to PM members themselves.

I’m currently making a map of PFS sufferers around the world. Maybe that would help to pinpoint people near the study centres, although a lot of members put ‘USA’ as their location which isn’t very helpful.

#16

This would be the easiest way of doing this. The overall idea wouldn’t cost anything and wouldn’t take very long to carry out.

#17

I am sure it is in 30 different places on this forum, but how about including links or instructions on how to sign up for the studies in this thread.

#18

How are you guys applying for this? Is there a website or are you calling? What’s the number? Do you need your prescription of Propecia or medical records? I know some guys here purchased theirs from an overseas pharmacy. Would that be a disqualification?

#19

ay I will take some time to describe my Intial story so this will be a long one and my road to headed down the road to Urology department all around the world.
I am a 23 year old who had the fullest of live was living in Bangkok,Thailand. I had a relationship of 7 years with someone i dearly loved.She had just moved back to my home country after living with me in Thailand for 2 years. My horror story starts on September 9th 2019 where i had visited a Clinic abour hairfall and suggested i take Finasteride. I was dumb enough to take this drug for 7 days on the 7th day i had horrible and severe pelvic,Scrotum and abnormal ejaculation starting with Brainfog and anxiety. I was alone and coudn’t figure out i was feeling a sharp shooting pain in the Groin area and my penile shaft was feeling kind of hard all day. I had developed something called a Hard flacid syndrome you can google the condition its a horrible one. I had severe anxiety pain and i tried getting an erection and wasnt able to. I never had a problem with getting my erection no matter how drunk i was a kid with very high libido as well. My penile is always hard in a flacid state and then i started panicking i went to count;less urolojists in Bangok spend thousands if not everything they had no idea what was going on some doctors didnt even belive theres something called PFS. in october i break up with my 7 years of gf because of the emotional trauma and i didnt want her to be a part of this mess. she had warned me not to take stupid pills. after 4-5 days i started getting one of two nocturnal erections. Know by then i had been given SSRI’s and other medication which i never needed i never had any trouble mentally or even falling asleep i was that kid partying everyother day and College life was pretty good too. This was the last semester. After seeing me like this my parents seen a complete change in my mypenile health was horrible which can emotionally scar you all i wanted was to get fixed and get over this. Well my friends something about this crazy drug- Finasteride it sticks to you like a glue. I tried everything chiropractor more than 20 urolojists Bangkok being one of the best medical centres in the world.

December i come to Houston texas to meet DR Mohit Khera. An amazing doctor who right after looking at my penile knew what was going on. he sent me to beracuttt physical therapy where i have been getting physio for the last 6 months countless sessions. in january things became worst after i heard My ex had been getting married arranged this broke me and i went to have sex with viagra with a girl i met 1 day prior boy did things go worse i got something called hollow flacid now penis felt light. as if theres no blood literally made up of AIR. a feather and my penis would be the same weight 1 month of severe ED. went to khera he did a intejtion and did some scanning or dopple someting, He said everything is fine stick to physical therapy.

For me to write this is beacuse ED at such a young age feels horrible taking Cialis every night and all. Dr. Khera said he will not do an implant because im to young he says theres a way to fix this. but so many months in im already losing it now i just want to get the implant done there are few complications more i have for the PFS like low semen. more refactory period. I ejaculate one a weel. I have 0 libido all hormones test come fine. I will be meeting Dr. Khera on the 9th june i will tell him if its not resolved by december can i get the Implants i have measured before i was close to 7 inch super horny and if im hard. I just want my life back this drug has ruined every emotional and physical aspect of my life. Please suggest me if anyone has gone through such states and how and what is the best option for me. I do get nocturnal erections everyother night but as i said very hollow and light feeling i have to constant prussure it to keep it standing even while marturbation.

I am already in Houston and Being treated at Baylor By Dr. Khera is there a way for me to get in this study.

#20

Well, if you are being treated by Khera, ask him. But recruiting stopped years ago and the first results have already been published, so it will probably be a no.