We need to put more pressure on the medical world

Why are we all here we need to spend more time banging on the doctors door :door: for answers
The medical world got all in this mess surely only they can get us out of this mess realistically.
I can’t understand all this trial and error talk of using different drugs different protocols different types of fasting blah blah blah.
I Could understand if it was a car we were talking about but it’s not this is something far more complex.
I don’t mean to come across as negative Im just trying to be realistic here.
Let’s all contact our local doctors again and again regarding these side effects then and then only will they listen in my opinion.

None of us are going solve this puzzle with a bag of spanners
If anything we are possibly going to cause more problems than cure trust me I know this from experience.
One thing leads to another thing it’s a never ending cycle and a road to self destruction.


Even after this post no one has replied to I still see posts for miracle cures that make no real sense at all.

Doctors are very interesting characters, most of them I’ve dealt with are very by the book, if the book doesn’t say this can happen, if the clinical trials of drug’s don’t list this as a side effect, they won’t believe it.

There are some who do their own research but all the one’s I’ve dealt with bar one hadn’t really a clue what to say and just thought it was my OCD. No doubt I have OCD but OCD doesn’t make your skin elastic and your penis numb…

So we need to fund the study’s in order to get actual evidence, science is all about proof of concept, it has to happen multiple times to be proven.


Hi @Baz44uk

It’s nice to meet you and have you here. Do be assured the administrators of this site are involved in the scientific side and in contact with the scientists directly. While we encourage users to share their personal results with therapeutic attempts, our goal is to move the condition forward in terms of scientific understanding and to uncover the molecular level drivers of the condition.

I do understand the frustration. Patients with a medical problem that is regularly life altering (and too often much worse) being left to alternative therapy attempts is astonishing, cruel and unacceptable. However, it’s important to bear in mind that that’s where the medical profession has left us thus far due to ignorance stemming from the novel nature and rarity of the syndrome. The FAERS data demonstrated that despite a much greater association with lasting disability in younger men, adequate reporting isn’t coming from clinical practice. Until there’s clearer scientific data, banging on their doors will not get us answers that don’t exist. PFS is extremely variable, both in affected sites and severity. Some people have luck with certain therapies and others sadly don’t, but regardless of the many varied conclusions users draw (and have drawn across the long history of this forum), the data of their symptoms and responses to therapeutic efforts in line with that is useful to us. It also allows other users to weigh up whether they want to try something themselves.

You may be interested to read the community projects we are running and how you can participate which will greatly help the issue:

All the best


A big thankyou for your replies guys
I fully understand both of the above posts and really appreciate you guys taking the time to get back to me sorry if I came across as negative but things seem to move along so slowly people have been complaining about these side effects for so long its hard to justify the ignorance from the medical profession throughout apart from a handful of doctors that have put the the dots together.
Frustration is definitely a big factor for all of of here I apologize if my post came across as a rant Im just trying to make sense of everything which is very difficult with all these ideas floating around I totally understand people trying therapeutic approaches but they seem so hit and miss and like I have said before they can lead to more problems or worsening present issues.
I will continue my search for answers and attend my appointments with the hospital to try to get some substantial medical answers to our situations.
Thankyou again for your replies.


The first principle of bioethics, the Hippocratic Oath, states: “First, do no harm.”

Well they’ve harmed. The first thing they should do is fix it. Instead I guess they’re busy creating new drugs that might do similar harm.


Hey did any of you ever try HCG? Saw you guys on another post, please pm new user would like to chat !!

Pm sent to you Rmoney96