I think I know what pfs is or a big part of it

General Discussion
#1

After 8 years of this I think I have a good idea what pfs is for me or a big part of it. After a while on this forum and the internet searching for answers in my beginning years of pfs I stopped searching completely because it led me nowhere and I begun monitoring my symptoms carefully to see if i could find correlations with things I do and how I feel. I believe I have a good picture, although of course I cant be 100 percent sure. This of course will not cure us but I believe this could help a lot of us.

When I stopped finasteride I became supersexual. This happened on day 2 If i remember correctly and is because hormones came raging back after suppressing it for a whole year. That night I masturbated and it really hurt my dick but also my head/brain (probably of too high hormones), and afterwards i went to sleep with still a bit pain in mainly my dick and head. That night I woke up middle in the night (very unusual for me) with a racing heartbeat and anxiety and I pretty much knew right away that the only thing what could have done this was finasteride so I started searching on the internet and found out what pfs is. After this night I had also developed peyronies, my dick always hangs a bit to the left now. And I believe this also happened in my head basically. Not that my head is pointing to the left, but i believe there is something in the brain stuck and become so stiff it does not function well anymore like with tissue involved with peyronies.

The things that make me feel good the last 8 years are all in line with this hypothesis. Because I believe something is stuck in the brain (stiffened tissue), everything relaxing it or expanding it would result in you feeling better. Here are the things that make me feel better

  • Not concentrating. Simple not focusing on anything, not listening or reading anything. Of course this will result in tissue in brain relaxing instead of contracting. Gaming is the worst for me and I cannot do it anymore (too tense) , watching tv is bad but not as much as gaming.
  • Sitting in the dark not concentrating. This is boring but helps me the most of all things. Your brain does not get stimulated at all, melatonin rises and relaxes it which prepares your body to go to sleep.
  • Fasting. Not eating for a while also relaxes the body and brain since it does not have to digest food and gets stimulated less… I begin to breath deeper and that also relaxes brain.
  • Getting fresh air. My body has become tense since pfs and somehow i can breath a lot better outside. I get deeper breaths and I also feel this translating in removing tension in my head.
  • Not doing drugs or alcohol. Every drug or drink results in a very tense body for me. Before pfs I could smoke endless amounts of weed with no problem never having a bad trip and always feeling relaxed. I had one good high the last 8 years and that was when I was sitting outside when it was dark for a while beforehand (1 hour or so), so with a relaxed brain. Now it freaks me out every time raising anxiety and heart beat enormously. I think this is logical if your brain and body cannot relax normally. I have also done cocaine a couple times and when my friends go to sleep I cannot because my body is so tense, mainly head.
  • exercise. Helps me because it deepens my breath therefore relaxing tissue in body. Best outside since my breathing is easier.
  • cold showers helps. Increases rate and deepens breath so relaxes tissue.
  • warm showers helps too. I get cold easily now and when i take a hot shower i instantly feel better since it relaxes body too, the water has to touch my head though to feel better by.
  • Eating sugar. Stimulates brain and body resulting in tense body.

If I connect these things I come to the conclusion that there is some tissue in body mainly brain that has become unable to relax anymore. I see there is tissue in my dick that has become stiffened, why could it not have happened in other places of the body. This also could explain pssd similarities since high dopamine and serotonin probably stiffens your brain. We are electric beings in the end and when we increase these electric signals in the brain too much I believe you will get stiffened tissue and results in pfs and pssd. I also think that the people that recovered from this were not that bad but also did a lot of things that relax tissue in the body. You also have a chinese saying that goes something like when your body is young you are very stretchy like a baby but when you get old you will become stiff like a tree. Peyronies is something old guys get although I managed to get it in one year, would be logical there happened some other things in the rest of the body as well we cannot see.

#2

you have not improved after 8 years? 0%? :slightly_frowning_face:

#3

Maybe think vascular stiffness. It could be a possibility, obviously micro-circulation would be affected first. Even in the eyes for example.
What about blood supply to the nerves?

#4

I am not saying I can cure it. I do say I can manipulate how I feel effectively by focusing on relieving tension in the head by doing simplethings. If I have anxiety i know where it is coming from and how i can remove it. I can also increase sensation in dick and have more pleasure in orgasm. Pfs is hard to cure but every clue can help us get closer. I do believe this can help other people too with pfs.

#5

Yep vascular stiffness and micro circulation is also a problem then.

#6

When i watch porn and masturbate I have a lot less sensitivity and pleasurable orgasm than when I sit in the dark and relax for a while before masturbarting without porn. Porn arouses brain and stimulates it too much for people with pfs and stiffens body. The last eight years i had a bit of libido were in my sleep, when i just woke up or when i relaxed for longer periods all when tension is the lowest.

#7

Have you actually been diagnosed with Peyronie’s? I’ve been to multiple doctors who did extensive tests and could not find any sign of Peyronie’s at all, even though I’m bending to the left as well.

#8

No i have not been diagnosed with it. Maybe i do not have it. All i know is thst my dick points to the left because of pfs. It is very obvious. What did the doctors say it was in your case?

#9

Multiple physical exams and imaging tests. All clean. It looks fibrotic, but it isn’t. Peyronie’s is fairly easy for any decent urologist/andrologist to diagnose.

Since it looks clean and healthy, they all thought I was imagining it of course.

But if it’s any consolation: it is not Peyronie’s. Which is further evidenced by all the recovery stories where shrinkage reversed.

#10

but after 8 years, from 0 to 100 how much you have improved?

#11

Everything you said is me to the tee. Especially your drug experiences. I used to have high tolerance and could hold my composure long after my friends. Now I can’t use a tenth of what they can without freaking out or acting strange or saying stupid shit, best to avoid substances or use in moderation to not look crazy in front friends and family because they don’t understand what is happening , all they see is someone acting weird. Alcohol doesn’t get me drunk anymore but gives my digestive problems so also in moderation, one drink a night is tolerable.

Sitting in the dark and living like a munk unfortunately isn’t practical. Pfs is the result of brain damage for most of the long time sufferers. Irreversible no , treatable maybe. Relief of symptoms momentarily using steps like yours , being strict using variations of dieting, for me limited exercise and maybe a half dozen supps is all we have to feel better.

#12

That is good to hear, I also do not have it then probably. But if it is not fibrotic, what is it then? Shrinkage on one side of the penis or something that makes it point to the left? I know the veins on the left side are enlarged and the ball is a bit smaller too. The tissue on my dick also feels a lot stiffer in the area, maybe because of the loss of soft tissue? All these questions and not many answers when we go to these doctors, they always tell you are fine and you are making it up.

#13

I have become worse. I have done some stupid shit and have not listened well to my body. I tried to live a bit of a normal life like I did before pfs (stupid me). Did some drugs (mainly weed) and worked a physical job that was too much for me, losing muscle.

#14

Yep, I also freaked out a couple of times before friends because of drugs. Before pfs I was the last person to do something like this, I could do anything and never had one moment of anxiety. And you are right the steps I do is living like a monk and it is crazy difficult because it is boring as hell, although it also helps me a lot. But I am just curious if more people with pfs experience the same, maybe everyone. This would bring us closer on a path in which we can draw correlations between people who have recovered and why some stay the same or become worse. When I read these recovery stories like chi and others on swole source I see similarities in what could have helped them push them towards recovery like, no electronic devices after 8pm, like being outside a lot in fresh air, exercise, diet , socialize. I also suspect they do not play videogames or watch a whole lot of tv since these are my main triggers. It is strange that we do not have a survey for people who recover, because we should have a near perfect picture of their daily life of what they have done to recover.

#15

I don’t know what’s going on exactly. I remember the shrinkage happened in 1 day. My endocrinologist didn’t see how you could possibly manifest some kind of structural damage overnight. Something happened, though, but no imaging test can detect it.

The symptoms do seem to point to a pelvic floor dysfunction, a theory that’s been discussed here and elsewhere extensively. I have no clue, of course, and I’m not advocating it as a diagnosis, but it’s interesting to entertain because of the similar symptoms (shrinkage, bending, loss of libido, numbness, veins, ED…). Sufferers see many specialists and are sent home with clean bills of health, some suffer for years…

#16

This research suggests that tissue stiffness may initiate an inflammatory loop that leads to chronic inflammation which accelerates biological aging and drives many age-related diseases; the genes that are activated via cellular tension are potential targets for immunotherapeutics. Techniques currently exist that enable the mapping of tension in specific tissues and organs and tracking the tension could provide a biomarker of aging and make it easier to test new drugs. https://www.longevity.technology/new-buck-institute-research-is-big-news-for-longevity/

Sounds like pfs to me. If we could test tissue stiffness in people with pfs.

#17

I am 10 years in now. Well, I can confirm what you are saying about the tense thing. But I can also tell you that this has been explained fairly well by research. The chemical that has been demonstrated to be out of ranges the more, is Allopregnanolone. Allopregnanolone is ananticonvulsive neurosteroid. Here is the explanation about your tense feeling. Your muscles get suddenly stiff or relax for the slightest reason. It’s a convulsive disorder. Much similar to that known in Post traumatic disorder. Most probably also your pelvic floor has this kind of dysfunction. And this might be the cause to your left pending penis, which I do have too now.

I had a head Magnetic Resonance 7 Y ago. There was nothing out of order, this means, no apparent fibrotic tissue. But of course stiff doesn’t mean fibrotic. Howver the allopregnanolone reduction is a sufficient element to explain the symptoms.

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#18

Low Allopregnenolone levels have been found in the CNS of PFS patients.

I have lowish allopregnenolone in saliva suggesting that I’m not producing high amounts of Allopregnenolone. I have high amounts of Allopregnenolone in the urine suggesting I’m getting rid of most of the allopregnenolone that I am producing. l think in my case my body is actually purposely getting rid of allopregnenolone

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