What measurements can i take?
Nobody believes us. We need some measurement ffs.
I guess its a stupid question, as thats the point of the studies (nobody knows yet what went wrong and what to measure). My family does not believe me. They want real objective data, otherwise they say its psychological.
If I take bloodtests (I didnt yet as there is no point really) and they come back normal they will feel vindicated.
What does your family say about the physical changes to you and your brother’s appearance? And the fact that you both are saying that you have been damaged in multiple ways? Are they putting that down to collective hysteria or something?
I think that you raise an interesting question re: testing and possible future testing. Hopefully the studies will lead to testing which identifies without doubt that our biology has been changed and demonstrate to the unbelievably numbskull medical community that something sinister has indeed happened to us.
Maybe you should request testing for connective tissue disease. My own came back very weak positive.
This is so fucked. Imagine it’s cancer and you tell someone and they reply that they don’t believe. It would be disgraceful. Shame on your family.
I think an important part of the current research at Baylor and Harvard is finding a way to identify and diagnose PFS in the same way that one is diagnosed with another disease. It will bring much more precision to the process, if that makes sense.
It is tough right now dealing with normal doctors, at least it has been for me. These studies will be an immense help in eliminating this most frustrating aspect of suffering PFS.
Despite our drastic changes in physical appearance our parents do not see them. Thats typical because its a degradation over month so you get used to the new stage before another collapse appearance wise takes place. Also its easy to forget how one once looked. If you compare photos the fat loss and jaw shrinkage etc is obvioius, but they wont believe their own eyes.
Because we talked about changes in our physical appearance and because they cant see the change, they believe that the sexual sides (loss of libido, no morning errections, no spontaneous errections, and severly reduced semen volume as well as no mind genetial area connection) are psychological. The argument goes: Because I cant see the obvious physical changes I bet the sexual ones are also psychological.
This psycholgical explanation has been upheld despite both of us suffering for about 4 month now since discontinuation.
They want hard data, which is an absurd request in and off itself, because how can I provide data, if the medical community does not yet know what to measure. I find it very disheartening that my own parents believe that I am a psychological basket case essentially. Also how can these severe sides be induced via the psyche for over four month, if my brother and myself never had performance issues.
Our family doctor (who did not prescriebe finasteride to us btw), says thats its psychological and has suggested to us that we need to see a sex therapist. Also he dismisses this forum, saying its mass hysteria. Its a certain arrogance of the family doctor as well as my parents, that they belive that they know better what is real and psychological then my brother and myself, who know our body, its appearance and our sexual function and we know that psychological issues are out of the question (we never had psychological issues in this arena and were very potent 
).
Its essential that we get some hard data to back us up. For this we need a reasonable explanation of our symptoms and a study that proves that changes have taken place.
Yes, they were with us while our face were changing. Thats why they dont notice now.
I would recommend not bothering too much with the “family doctor” types. For the most part, they know nothing of our condition and it is highly unlikely they can do anything to truly help you.
The studies man, that is what will put it “on the map”, so to speak.
Do not stress on these issues right now. The bigger picture will take care of all of these types of things.
It will be ok, and your family will come to understand when the time is right.
It will be ok.
yes do saliva test, it is totally opposite to blood test. while blood test show almost every thing normal saliva test will show you are pretty bad.
Have you shown your parents the photographs that other guys have posted here? Maybe this might help convince them? It could be that they just don’t want to believe that this could happen and this will cloud things for them. I’m sure that the evidence is there to prove empirically that something biologically has altered and that we are getting much closer to that point where no one can easily refute what has happened.
If you want to mess with your doctor ask this question:
How can a mental problem cause the amount of semen my body produces to change? Overnight I may add???
I get a kick out of their attempt to answere that question.
Try hormone profiling from Rhein Labs: rheinlabs.com
That’s how I proved that something is physiologically wrong, since all my blood work is normal.
Speaking of family doctors … Mine just retired. He was old as the hills and useless. It was pointless to even discuss it with him. I just got a new doctor and he’s young and smart. He’s already fixed my moms issues which were due to being on too many medications for heart disease. He’s constantly monitoring and getting lab work, etc.
He ordered full blood work on me (by Canadian standards). When I discussed my propecia sides after 5 years, he asked if my last doctor thought it was a “psychosomatic” thing.
I brought up Boston and he looked surprised and is very interested in what they have to say… Definitely wanted me to tell them he is my family doctor. I’ve decided to no longer blame the family doctor for not knowing about PFS, yet. I do hope they find measurable PFS characteristics soon. I look forward to the day I can give my doctor something proving PFS.
absence of cremasteric and bulbocavernous reflexes. if you still have those you’re in pretty good shape, considering.
My doctors response was that how you feel effects your blood results. If you believe this you can diagnose depression as the cause of every illness.
Seriously these people only know of what they were taught in medical school to treat common illnesses. Anything else is referred to via old textbooks or WebMD if they’re younger than 35.
I don’t doubt there are doctors at the cutting edge of medicinal discovery from their respective fields.
But for most it’s simply about knowing enough to convince patients during their 30 minute £300 consultation that they know what they’re talking about.
A solution will only come through science, but it’s a waste of time, money and effort to bother interacting with conventional doctors.
Only ones to care about are those with a staked interest in expanding knowledge in the field. The studies from Italy are the most interesting thus far. Hopefully the Foundation are directing similar efforts within English speaking countries.
What do u mean by amount of semen the body produces. I don’t get it??
If you had pfs that wouldn’t confuse you.
Please explain that to me… what does he mean by the amount of semen the body produces??
Significantly reduced Ioad + longer time between ejaculation for said load to regenerate. That’s my experience anyway.
Well if I masterbate 3 or 4 times a day I still have decent loads… but of course if I go 8 hours they are bigger