I am quite surprised by the tone of this response @axolotl. I have always been extremely respectful with everyone during the 8 years I have been part of this forum. I understand that we all are going through a tough time, but I think you are overanalyzing some of my comments.
There are many theories on this forum, and many of them make no sense at all. As I said many times, the only one that makes some sense is the AR theory (that’s why I have been donating to the foundation in the past, and that’s why I have explained all these theory to the journalists who interviewed me three years ago on TV3), but it is also true that part of our problems could have other explanations (or no, I think that most of us should use more the words “I don’t know” and see what evidence do we have to prove each theory). When I talk about other explanations, I am not talking about Candida, I am not talking about prostatitis, etc. I am only talking about those possibilities that have some evidence.
During the last months I have been talking with doctors and researchers, and they have provided some information, that one does not need to agree with, but I think it also needs to be beared in mind. As I said in another post, we (when I say we I mean people, or people like me, not anyone in particular) tend to search information with a cognitive biass (for more information: https://en.wikipedia.org/wiki/Cognitive_bias)
During 7 years I totally discarded that my penile shrinkage and hard-flaccid symptoms could be caused by a stress reaction, but one of the doctors I am talking with has been providing some information that has made me think that yes, there are many cases of shrinkage in which stress can play a key role. I obviously respect the opinion of someone who has studied medicine for 6 years and has many other years of practice. Obviously some doctors don’t even know what they are talking about when they mention PFS, but I respect those who thake their time to analyze the situation and share their opinion based on their knowledge.
Here’s a small article about it if anyone wants to read it:
Within the body, psychological stress triggers the release of adrenalin with a primitive fight or flight response. The body goes into high alert; blood is directed away from certain visceral organs like the stomach to the muscles of the limbs and pelvis, so danger can be avoided.
One of the biological theories proposed to explain the relationship between stress and the development of hard flaccid syndrome is as follows:
- Initial stress, be it physical or psychological, triggers an abnormal fight or flight response resulting in increased sympathetic stimulation to the muscles of the pelvis via the perineal branch of the pudendal nerve.
- A surge of adrenaline, noradrenaline and cortisol is released from the afferent nerve fibres promoting increased blood flow to the bulbospongiosus, ischiocavernous muscle and levator ani muscles as well as sustained muscle contraction.
- Sustained contraction of the ischiocavernosus and bulbocavernosus muscle results in obstructed venous outflow from the penis via compression of the deep dorsal vein. This process is likely to be responsible for the semi-engorged penis in the flaccid state.
- Prolonged contraction of the muscles results in pelvic myoneuropathy secondary to neurogenic inflammation.
#> ### Clinical features
Patients usually seek medical advice because of the following symptoms:
- Penile and perineal pain. This is most severe in the standing position, less so in the sitting position and absent when supine. The pain regresses when urinating.
- Patients report shortening of the penis associated with a constant cramp / clenching sensation in the pelvis.
- Penile sensory changes can be reported with the penis feeling numb to touch.
- Erectile dysfunction. There can be loss of morning and nocturnal erections. Excessive physical stimulation is often required to obtain an erection, in addition to visual stimulus or cognitive thought. The glans can remain flaccid during erection.
- Pain on ejaculation and urination with a reduction in urinary flow.
Does this mean that my shrinkage is caused by stress? No it doesn’t. But now I know that there is a small possibility of stress playing a role in such damage (not necessarily explaining everything). And after some years I have reached the conclusion that I prefer to have as much information as possible. I would walk out of doctors offices in the past without even discussing with them, now I prefer to debate and listen.
I don’t know why you mention this, an EMG is something that has been suggested through the years by some doctors, and the reason one of them asked me to do an EMG of the perineal area is because I asked her to test if I had perineal neuropathy. After this, one of the options she is talking about is that it can be due to nerve entrapment. What I have been saying in some of my posts is largely based on listening to her.
I obviously believe that there is much more to this that what doctors are saying , but we need to listen to people who think different than us, especially if a doctor is giving me some evidence.
By the way, I want to make clear that I am totally discarding this thing being a delusion (as well as my doctors), the proof of physical changes is there. The only thing I am saying is that every logical possibility needs to be taken in mind. For example the reason I believe that hard-flaccid can be caused by stress and not by candida, is because I have had a doctor showing me some respectable information about the first of this two options, I have never seen any evidence on candida causing shrinkage.
I see you are quoting me on the day that I had the test about CK. Two things about this: 1.On that day I was very very low, and I agree that was not my best post -probably it was the most impulsive post I’ve written- 2. Searchin every word one has said and then remember him about every single word is something that I don’t agree with, it was done in the past to discredit some of the administrators by some of the most controversial users, and it never ended well, it only brought crossed accusations. I think you have done a good job in improving the outlook and ways in this forum (creating a coping section, talking about caring about others) and I can tell you I much prefer this ways.
What I do say again is that there is a high possibility that part of our problems are brain related problems. I find very interesting what Melcangi has been publishing. You disagree with some of the things he has done, and I respect that you do so, Melcangi is not a messiah and I won’t question your opinion, which is totally fair.
I had a terrible day on that day when I measured my CK, we all have some bad days and bad posts. For example I disagree with some of your recent posts: I totally disagreed with you when you banned for a day a guy who on that same day was talking about contemplating suicide. You also said to him that he was doing “x-box research”, which in my opinion is very irrespectful. He said some things that had no evidence to proof them, but there was no need to insult him.
I aso disagree with your statement that being at propeciahelp is a privilege rather than a right. I understand things differently. For years, this has been a home for people who are suffering A LOT, and yes suffering means that sometimes these people may say some things that are quite questionable, but this is the only place where many of these people can talk about these problems. In my opinion, a ban to a member of this group should only take place by this person lying (e.g. solonjk), insulting other people, or asking people to try dangerous treatments.
Even though I totally disagreed with you I didn’t thought of answering you in a bad tone and quoting every word you said, and searching some old posts. I just respected your opinion, as well as I respect you, and maybe I would have sent you a pm with my opinion on this regard, but nothing else.
I never say that I know for sure something (as some others have been doing, especially in strange theories).
I have not referred in any way to the administrators of this group, if I would have wanted to do that, I would have said “the administrators of this group”. If you see many of the posts that have been posted through the years, especially by users that come and go, you’ll quickly understand what I mean by “making strange maneuvers to connect symptoms to the theories that have been most discussed”.
I have nothing but respect and empathy for the administrators of this group. During many years I have sent private messages to awor (probably since 2011) because I totally respect him and he has given more than enough proof of knowing what he is talking about. He is the reason for me to have given money to the foundation through the years (and will do again soon as I have started a new job despite my difficult situation). I can also say I love the way Philip has quickly answered all my questions and has supported me when I was at my worst.
I also think you are doing a great job @axolotl, though, as I said, these last weeks I don’t agree with some of your posts, but I totally consider you a brother, because I know that you are going through a lot too.
I am sorry, but I can’t accept this one. People have own mouths and keyboards they can message me whenever they want. I haven’t received a single message of any member of this forum saying what you are saying, not even an anser post. The sentence “a few members have said they were upset at you” is quite unacceptable, I understand that you are giving your opinion, but people are adults, and there is no need to speak on their behalf.
The only post I have seen on this regard is the one by @Tzinkman, which I wanted to reply but I ended up not replying. He quotes a study about PFS being a possible delusional disorder which I totally disagree with. As I said, I have no doubt that PFS is not a delusional disorder.
Also I found the following statement quit hypocritical:
I don’t agree with someone questioning the way others talk about possible explanations, and immediately saying “I state it UNEQUIVOCALLY AND WITHOUT DOUBT there is absolutely no component to my symptomology whatsowever” (because I know it and that’s it!). The fact that someone has severe symptomps doesn’t mean that there is not a possibility that some of them are being psychosomathic.
I totally disagree with that statement: It may be true that there is no psychological component, but claiming he knows for sure is doing the same mistake he is saying about others.
Also, I just remembered that when I talked about my shrinkage starting when I took ritalin, one member (@DHT) told me that the anxiety while taking ritalin could have played a role. I immediately thought that he was crazy (and I answered him that I didn’t believe it was possible). But looking at the past, I probably should have answered him “thanks for your input, even though I find it strange I’ll look into it” or something like that.
Finally, I need to say that I have been a proud member of this forum for 8 years, I love each and every person in this forum and the ones that have left us. I have tried to help people especially when they where feeling extremely suicidal. I understand that it’s inevitable that there is strong discussion every now and then between some of the members (though I have never taken part in any of them), because it is obvious that when people are going through tough times these things are more likely to happen.
I think I have always been respectful, and will try to be respectful also in the future. Obviously I will try to make everyone feel comfortable, and if some of the things I have said make you feel uncomfortable, I will try to say them in the better possible way (if you feel that something needs to be changed, you can always pm, and I will have no problem).
I love you all boys, we are in the same fight. I really hope the Baylor study brings us some clues, and be sure that even if it doesn’t make the picture more precise, I will always support the PFS fundation.
I hope we can one day celebrate our victory together.
P.S. This is a long text, sorry for my English,