Baylor study questions

General Discussion
#2

Per the PFSFoundation, the The “objective of the study is to determine why PFS patients develop sexual dysfunction.”

It’s methods include: To (i) evaluate sexual and psychological function, (ii) assess hormone levels, (iii) measure penile hemodynamic and sensory parameters, (iv) study androgen receptor genetics and gene expression, and (v) and determine gene expression patterns and profiles.

I would say it’s an extremely important study. Its goal is to figure out why we’re messed up sexually. However, based on the methodology overview, it seems like it will only attempt to answer this question from a genetic/receptor point of view. I think this could mean that we could be disappointed if the genetic/receptor studies are inconclusive, or if genetic/receptor problems are not our issue.

I believe it is the biggest study yet, or at least the biggest one that is trying to answer the “why/how” of PFS. Best case scenario, they find out what is wrong with us. Worst case scenario, they come up with nothing.

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#3

I’ve been asking myself these questions for a long time especially considering the delays in the study.
Being messed up sexually for years has some serious impacts mentally and not being able to find the answers as to why this has happened let alone resolve the situation really does top it all off.
Lets hope that this study reveals all the answers and finally we can stop the trialing of our own medical and supplemental concoptions using ourselves like some mad scientists lab rats.
Sexual dysfunction has got to be one of the cruelest most mind bending drug side effects you could imagine but not having explanations just takes it to another level.

None of us have the answers to anything we are all in the same boat trying our best not to rock it.

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#4

I agree what a shitty ride life can be sometimes, 22 and don’t even beat my dick anymore lol… why does it keep getting pushed back?? What’s the Italy study about ?

#5

It gets pushed back because it is taking longer than expected to process the data.

#6

when was the final date about publishing it?
Does anyone from this forum have direct contact with those conducting the study?

Im particularly interested in the gene expression changes

#7

The admins of the forum are in contact with those involved but unfortunately, we will all have to wait for it to be published.

Axolotl explains it in a recent thread here:

Gents93 story - Post Aromatase Inhibitor Syndrome?

#8

why no one says the time we would wait?
we lost too many people due to suicide already
they know the estimated time they need for shure

if they openly told what amount of funds they need and maximum time they need would be great

no need of more deaths here,or just tell people that they haven’t conclude anything so i can suicide myself with clear concise honestly :))

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#9

Those carrying out the studies will be more than aware of what those with pfs go through, especially as the man who set up the foundation lost his own son to suicide. As previously discussed on this forum, one reason this study has taken so long to come out is because of what they have found. There will be variables that they can’t control which I would imagine will make it difficult to be specific regarding publishing, but this deferment I believe should make us more hopeful as there are clearly concrete findings which have to be carefully processed. We all understand what you’re going through, but I would advise being careful about your choice of words, especially with regards to suicide. Although written in humour, it comes across a bit like holding an emotional gun to the those involved in the study when in reality we are all in it together. Hang strong.

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#10

nevertheless my point was that they should give a final date and funds they need so we home some concrete ground, that’s it

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#11

They’re not waiting for more money.

As Scotsman said above, there are variables that they cannot control or plan for that have affected the duration of the study.

Unfortunately, nobody can tell you anything but hold on. It is coming.

#12

The study began in 2013…Ended in 2015 and they have said ever since 2016 it was publishing only to be delayed each year…So thats it in a nutshell far as timeline goes…

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#13

ok tnx very much
this gives me a lot of peace

#14

You should contact Philip at the PFS foundation by e-mail or on the telephone. He will be able to discuss with you about what is happening regarding research. I know things don’t seem positive at the moment, but research is progressing steadily. I am hopeful that the Baylor study will be released during 2019.

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#15

Not to sound like a downer but what if it is a mutation to DNA ? Is there anything even close to being made to change this ?

#16

as far as DNA mutation goes, my personal opinion is that we probably have a genetic disposition to developing side effects to inhibitor drugs/methods that lower active ligand. this is why some can take inhibitor drugs and not undergo side effects. i have a many friends who
take finasteride, arimidex, accutane, SSRIs without any issues.

if it were something like a DNA mutation that causes cerebral palsy. you can’t change that. it’s forever but me, and a lot of people here do not think that’s the case at all. it’s most likely epigenetic in nature because we were all “normal” at a point. we will have to wait and see.

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#17

I’m not that up with the science, but there is Crispr and Zinc finger editing. This area of science is progressing very quickly, but isn’t quite ready for use on humans yet.

#18

Sadly, it’s not the taking of it that’s always the problem. For some people it’s stopping.

There are people here who used drugs without issue, stopped and crashed.

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#19

I convinced two of my good friends to stop taking finasteride, both stopped without any problems and both told me they felt slightly “down” on finasteride. but that’s literally it. everything else was unaffected.

#20

Ive been looking on bodybuilding forums some of those guys are very knowledgeable when it comes to hormones and body chemistry alot of bodybuilders use finasteride to combat hairloss due to steroid use this was the same reason I used finasteride ,Guess what opinions are all over the place on these muscle head forums one guy will say he had no side effects and loves finasteride the next guy will say he tried it got sides stopped and the next guy will tell its poison it’s fucked him up sexually for years its a god damm merry go round all the way its hard to make any sense of it all the only thing that is 100% certainty is that the guys with the problems are all 100% sure Finasteride caused the problems they had no medical or physical or sexual issues prior to Finastetide if anything they were rampant sex machines now reduced to Limp dick monks …

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#21

I think his point is that there are many people taking it (or who stopped) who are not affected. In fact is the vast vast majority.