what protcol are you using?
be careful, it could be a fake recovery , it COULD.
If so then stay strong …
I think this is a neurological/neurotransmitter condition so I don’t think hormonal treatments are the way to go. I’m focusing on the following:
- Managing stress and trying to stay positive (stress wreaks havoc on your neurotransmitters and hormones as well)
- Sleep and general health
- Diet and exercise
Most of the recoveries on here or other forums I’ve read about were natural and occurred over time. Only meds I am currently considering are alpha-1 blockers or cialis to encourage blood flow down there and avoid permanent damage.
Hopefully I can see some improvements after some time. If not… I will put my faith in the studies. But they will need to either get lucky or encounter an issue that is surprisingly non-complex.
Can’t believe I got myself into this mess. Last night I dreamed about being with a certain woman, but I wouldn’t be able to perform even if I tried.
I have abstained from ejaculating for 10 days and I am seeing big improvements in libido, ED, sensitivity, prostate pain, and flaccid size. At the moment my flaccid size varies between “hard flaccid” and normal. I am also getting some nocturnal and morning erections although they are normally weak.
Anyone else experience this? I do not think my body is permanently broken. From what I have read and experienced, certain theories on this like androgen insensitivity, demyelination, etc. do not make sense. Especially since so many users have fluctuating symptoms and periods of recovery.
My symptoms seem to correlate directly with the level of tension in my perineum (which is usually very tight).
I abstained for a week during a holiday in Spain. Combined with intermittent fasting, resting and drinking green tea I also recovered libido and nighttime erections.
Have you recovered them permanently?
I am going to make abstinence a big part of my protocol. People focus on the fact that ejaculating increases prolactin, but it also stimulates the sympathetic nervous system and depletes neurotransmitters necessary for the parasympathetic. Alcohol (another instigator of crashes) also decreases activity of the parasympathetic nervous system.
moonman1 made a thread and MANY people seemed to be under a lot of stress when they crashed. This shouldn’t effect propensity to AR mutation or demyelination, but it seems to be a big factor in crashing, which points toward CNS collapse more than anything.
Many of the symptoms of PFS can be explained by dominance of the sympathetic over the parasympathetic. Eg flaccid size is dictated by the balance between sympathetic and parasympathetic functions. Dominance of the sympathetic will lead to shrinkage and blood flow issues, ED, premature ejaculation (which I seem to have now), pelvic tension and pain, etc. Not sure about libido though. Libido seems to depend mostly on sensitivity and mind-penis connection.
Nocturnal and morning erections also depend on your body’s ability to shut down its sympathetic functions and let the parasympathetic go hog wild. I wonder if this could lead to the broken sleep issues most of us have.
Several people have seen improvements with alpha 1 blockers, which blocks nor-epinephrine from binding to the pelvic musculature. This doesn’t restore the balance of the sympathetic and parasympathetic, but it does decrease the effect of the overactive sympathetic.
This theory would explain symptom fluctuations better than androgen insensitivity, demyelination, etc. I also don’t see how demyelination could occur with 4 pills. Nerves are tougher than that (but nerve signals… not really). It takes people years to see the effects of MS for example. I guess I am biased though since I do not want to believe that I have permanent structural damage.
The big issue that may not fit with a strictly nerve signaling problem is the hormonal issues. But from a search it does seem that the autonomic nervous system influences testosterone secretion, etc. The blood flow issue to and from the testes is another factor.
I hope that Harvard and Baylor have a neurologist(s) on their research teams to explore all angles and not approach this from strictly an endocrine angle. Unless they are really making progress with that route.
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Hey Bens, ignore PVDL, he is a miserable woman on PMS, if you don’t do anything about PFS, you will end up just like him, this is what happens to men when they allow themselves to become estrogen dominant, they grow breasts and become bitchy and negative. He is on a 1 man mission to take hope away from everyone, here is the thing though, for months I have been managing PFS with hormones. At first I was about 30%, then the protocols got better and I got to 50%, for the past month I have been at around 90%. I am 8 months in, I am on a lot of hormones, but I have full symptom reversal at this point, I have sex, normal sexual function, over the past couple weeks started bulking up a lot of muscle, I am buff again, getting bigger every week. The studies are one thing, but not everyone has the same level of damage, PVDL is just a vicious person, anyone who tells you that you are “fucked,” you should immediately ignore.
Some of the best doctors in the world are treating this, Dr Shippen for example is using Dexamethasone and Andractim with great success, he is one of the most famous doctors in this area in the world. Dr Goldstein has a great program with 40%-60% success, the guys who do not respond to these protocols are the minority of PFS sufferers it seems. There are some guys who are non-responsive to hormones, but most seem to be responsive at various levels. If you would like to come to a more positive place where PVDL is banned, come to SolvePFS.com, there you will find answers that might help you, rather than being told you are “fucked.”
I suspect PVDL didn’t have much of a sex life before PFS to miss, that is why he is so happy accepting his life this way. When you can’t get girls ever in your life, and you get PFS, it just makes things easier for him. I didn’t drink the cool aid, when I came here I was told hormones didn’t work, I believed it for a while and was depressed as you. 8 months later I am living a normal life, dating, PFS still is there under all these hormones, but who cares? The only thing I couldn’t reverse was getting huge muscles again, but then I reversed that recently as well! I am BUFF AGAIN!
You may be non responsive to hormones, or you may be responsive to hormones, most guys are responsive, I went through 150 protocols, failures, trial and error before I got to where I am today. Also, there are some new lines of thinking with Dexamethasone, the famous Dr Eugene Shippen is having success with it along with Andractim gel (DHT gel). It is very depressing when this happens, life shattering, the reason it is not for PVDL is because he is a little twerp that never got laid in his entire life even once. He is the most disgusting individual I have ever encountered on here, all he does is insult people and tell them their situation is hopeless.
I don’t come here anymore to read posts, I just so happen to see this as I was responding to a Private message. Yes, hormonal protocols can make you feel worse, you will undoubtably feel worse before you find what you need to feel better. I didn’t give up, and now I have my life back. Remember what I said, he never lost anything, he had nothing to lose, he probably never got laid a day in his life, that is why this is so easy for him. He seems to really enjoy making people feel miserable, usually extremely dark people like him are that way. Oh and people will tell you how hormones make you worse and my protocols make people worse, they made me worse too, then I got better. Most guys with PFS go seek medical help from Dr Shippen or Dr Goldberg, I recommend seeingthem both. There are just a few guys here who do not respond to hormones, they believe thus that no one responds to hormones, don’t listen to them. This is your life, don’t put it in the hands of some wretched woman on here, contact Dr Goldstein, seek medical help
Guys here will tell you he has helped no one, LIES, he has thousands of PFS patients, none of them come onto this forum for obvious reasons, TOW8er is one who has recovered from Dr Goldstein’s protocols. When you are doing good, there is no reason to come on here and read that you are really doing bad. Don’t drink the cool aid. On one hand PVDL wants these studies to be done, but on the other, he bashes these doctors, some of them are some of the best in the world in their field. Let him be happy being impotent, he can knit sweaters and go shopping with the girls, and paint nail polish, just reading his posts you can tell he is a total dork. PVDL, you can respond all you want, I won’t be checking this thread, so they will go on deaf ears. Come to SolvePFS.com Bens, and contact both of the doctors below, don’t take your medical advice from PVDL, get it from an actual doctor treating this condition. There have been numerous recovery stories from just Dexamethasone alone, hopefully I will see you on solvepfs.com, if not, hopefully you will seek real medical help. Every PFS doctor I spoke to told me these forums have only a TINY FRACTION of PFS sufferers, most seek medical help. To be honest, the kind of guys who come here are usually living in other countries where they do not have access to this kind of medical care. Not all PFS sufferers are here, most are not, and many are living normal lives thanks to Dr Goldstein or Dr Shippen.
Dr. Eugene Shippen, M.D.
Author, “The Testosterone Syndrome”
Phone: 610-777-7896
Dr Irwin Goldstein, M.D.
Urologist & Director, Sexual Medicine, Alvarado Hospital, San Diego, California
sandiegosexualmedicine.com
Phone: 619-265-8865
Fax: 619-265-7696
Email: information@sdsm.info
Sex is the one thing I’ve found that frequently makes me worse and looking at your diagnosis above, it might explain why.
I’m going to abstain for 1 month and then come back and post about symptoms and recovery.
Wish me luck.
Hey JustQuinDut, thanks for the reply. I have already signed up to that forum, but I haven’t posted there.
I have read numerous reports of people recovering between 6 months and 3 years on other forums alone, so I’m not sure if I want to go the HRT route for a while yet. I’ll wait to see if I can see some natural improvement.
I personally have too many neurological symptoms to ignore and think that this is strictly a hormonal issue.
For example, I have twitching in my calves and sometimes the back of my thighs. And only in these places. This follows the pattern of the sciatic (specifically, the tibial) nerve. This nerve is part of the sacral plexus, which is very closely related to the pudendal and other nerves related to sexual function.
upload.wikimedia.org/wikipedia/c … ematic.svg
There are a few different possibilities I have come up with for this:
- Dysfunction of the pudendal, etc. nerves are leading to a general dysfunction of the sacral plexus
- The piriformis (which forms essentially the back of the pelvic floor with the obturator inturnus) is spasming in response to the spasms in the pelvic floor and is impinging on the sciatic nerve
- The entire sacral plexus heavily depends on whatever neurotransmitters got messed up in PFS and now the entire network is dysfunctional. Dysfunction of the pudendal nerve, etc. is just much more obvious than dysfunction of the sciatic nerve.
I also can’t ignore how much we have in common with other neuromuscular disorders like CPPS and hard flaccid. They have ALL of the same symptoms pretty much. We just have it much worse (which would be expected since finasteride can likely instill a level of dysfunction that natural causes can’t). It is possible that an endocrine issue is the root cause in our cases, but it is also possible that it isn’t. Finasteride greatly stressed our nervous symptoms and may have just left us in a state of perpetual dysfunction.
If you don’t believe that a dysfunctional nervous system can alter hormone levels, consider this:
ncbi.nlm.nih.gov/pmc/articles/PMC2483324/
I have also noticed that my symptoms aren’t exactly symmetrical. The prostate pain is much worse on the left side, but the leg twitching is much worse on the right.
Dr Goldstein has a great program with 40%-60% success To clarify this statement… His success is getting guys 40-60% improvement. He has none at 100%.
I have had CPPS and still get flare ups. It’s horrible to be in pain all day.
It’s not the endocrine system that is the root cause, it is a consequence, all guys with PFS get the muscle twitches in calves, when I get my DHT levels up, they go away, or an anti estrogen on test and they go away, masteron has killed them. Google the 5AR type 3 enzyme, it is responsible for ocular and neurological function. When the enzymes were destroyed by fin, they were recreated mutated, this induced an immune response to attack the enzymes, now our immune system is attacking the 5AR mutated enzymes. Some guys had less mutated enzymes, some have more, this explains varying levels of damage.
Managing the condition with hormones is just to get by, but definitely the root is the immune system I believe, autoimmune. I have been able to mask all PFS symptoms with an intense hormonal protocol, this is just to buy me time till I recover or find a way to recover from this, under the hormones is PFS. When my Masteron levels get low, the muscle twitches start again, before Masteron I was able to stop them with an AI (if I was on a good dose of test).
Here is another PFS doctor, he is taking a whole new approach dealing with adrenal glands, insulin, and he is brilliant, email or call him, he is hitting it from a totally different angle.
Dr. Harlan Bieley
561-842-7422
hllmc.com
ask@hllmc.com
I don’t have body wide twitches though. And you don’t seem to either. So the question is why are the twitches only along the path of the sciatic nerve? Which coincidentally has an intimate involvement with the pelvic nerves.
If a systemic enzyme is no longer functional, you wouldn’t expect the effects to be isolated to certain nerves.
Are you not worried about messing yourself up more? I mean it would make it a lot easier. I want to give my body a chance to make improvements on its own first though. I am capable of living my life day to day and I hope that, as the days accumulate, I will see improvements. But I appreciate the help and Dr. info.
On an unrelated note, my glans has started to expand when I get erections again. Has this happened to anyone else? Did you continue to make improvements?
I have just read JQD post and obviously you can sense that he is insane. I am actually quite worried about his mental health, and hope that he seeks professional help. However I am even more worried, that people will try his dangerous protocols, and be worse off afterwards. Thus I wont hesitate to strike out against him, when he spouts his propaganda.
His stories change from day to day. In his first posts on propeciahelp.com he claimed full symptom reversal, now its at 80 percent since 1 month. Before he claimed that Dr. Goldstein doesnt know what he is doing, now he is a great doctor. Once he told everyone that supplementing DHT was a very bad idea, as it had a suppressive effect on our own production of hormones. Then he made a 180 degree turn and said that supplementing DHT would lead to full reversal. He said that dozens of people were trying his protocols, and experienced full recoveries, until now nobody has come forwad to substantiate this claim. He posted that he had figured out PFS, and had found a cure, and that he was listening to Mozart, just like in movies were enormous discoveries were made by geniuses. To top it all off, he threatened to actively sabotage the foundation, by trying to convince everyone to immediatley stop all donations.
He seems obsessed with me. He actually created fake accounts to discredit me. So his new line of lies doesnt suprise me. He will try every angle.
Now he has taken over solvepfs, were he can spread his propaganda uninterupted, and were the moderator is basically swallowing his cum and saying its tasty. He is trying to get as many people over to solvepfs as possible, so that they can pray at his altar.
He uses strawmen and now is attacking me personally, saying I had no sex life before PFS and that I am a woman, which is obviously false. My sex drive was actually extremly high, I had constant spontaneous erections to the point of this being annoying. Also I my cock was so huge that my ex girlfriend said I should star in pornos . I am saying this to clarify the situation.
I am not saying give up hope, I am saying dont pump yourself full off hormones which are recommended by some insane anonymous poster. The entire Theories section was shut down, because the moderator was worried about JQD behaviour. Think about it: JQD claims that if you dont swallow his vodoo medicine, you might as well kill yourself. I am saying: You can still have sex, enjoy it and let your body recover, even if the enjoyment factor will be less and your sex drive lower. Believe me, I know what a high sex drive feels like. I had constant spontaenous erections, to the point of this being extremly distracting in daily life.
Let your body try to recover. That is absolutely the correct route. Meanwhile you can try and participate in studies or donate to the foundation (as insurance for the case that your body is unable to recover fully). Also you can still have sex. Many people here are able to have sex and enjoy it to a certain extend. Dont listen to JQD, he is really a sad case and has a serious mental illness (narcisim, Messiah complex, egomaniac, delusions of grandeur).
I have no doubt that I would just make myself worse with HRT. I am unlucky. We all are. 20 some thousand people studied in multiple clinical trials and (allegedly) no one got persistent side effects. I take bigger risks than that every day.
I’m done with pharmaceuticals for a long time. I won’t even take a tylenol.
PVDL actually followed me to solvepfs and he ADMITTED it here in a thread, said he did it for laughs, but it wasn’t funny after the 4th fake account he created. My point is, go see a doctor, it is clear PVDL doesn’t want anyone here to seek any medical help based on 1 case of 1 guy named Awor who was not responsive to hormones. That is the minority, very few guys are non-responsive, most guys are responsive to varying levels, I have brought myself to 90% and stable. Contact a doctor, PVDL can accept this life as he never had a sex life to give up, you will find most guys here cannot just “accept” being impotent. Only a guy who had nothing to lose can do that, PVDL never got laid a day in his life, that is obvious, or he would be crying.
Dr Goldstein treats thousands of patients and their lives improve, you don’t want to sit here and get your medical advice from some guy on a forum, go seek medical help from a doctor. This condition can be manageable and treatable, PVDL makes no sense, he calls even Doctor treating this condition “home brew,” he is obsessed with Awor and the posts he read from him. Clearly it is a TINY percentage of guys who are non-responsive, PVDL just wants everyone to join him in his own hell. You don’t have to live like this, I got out of this through hormonal treatments, there are other ways too.
We have IP addresses and evidence all the accounts were created by PVDL, that is why he was banned. Here is another new PFS doctor using some new approaches to get to the root.
Harlan Bieley
561-842-7422
ask@hllmc.com
I think its a good idea. What JQD is doing is artificial at best and dangerous at worst.
Dont trust him, he is mentally unstable. He will attack anyone who outs his protcols as none functional. And yes, I did troll him with one account for one day on solvepfs. Why? Because he was promising to leave this forum while continuing to post on it. Thus I posted in his home base.
The fake accounts he mentions, have nothing do with me. JQD probably created them himself to discredit me. He doesnt have prove they are my ones and if he has he has faked the prove. Its insane that I even have to discuss this, but when you start arguing with mentally unstable people the discussion will be truly absurd. The first time he accused me of spaming the other forum, was month after I had been kicked off it by the moderator for trolling his bs posts by pretending to be a avid follower (I love you JQD and stuff, which was actually hilarious). My brother actually mentioned it to me, that JQD was accusing me off this, and we both couldnt believe what we were reading. It was truly absurd.
I am not impotent btw. I dont need to accept no sex life. Maybe thats the situation for some guys here. However I am still able to have sex. How does he know I have no sex life? Obviously he doesnt, and I can tell you that I did and do have one.
Anyway I find it incredibly insenstive, to mock those guys who are completley impotent, who wont follow his protocols, for not having a sex live. Even if its not true in my case, the line of attack (sex life of other posters), is perverse considering the condition we suffer from. But I guess JQD will post anything, if it furthers his agenda.
Anyway dont listen to his trite. There are countless guys who were non responsive to his treatments, or hormones in general.
He will just repeat these lies over and over again. Didnt he just say he wont read my reply?
See, that was another lie.
And one more thing:
I am not promoting hopelessness:
-
Your body might be able to recover naturally over time. As it just experienced a full frontal blow, give it time (years), and see what improvements you make (mentally, physically and sexually).
-
Professional research institutions are for the first time looking at this condition. Enable them to do their work by participating as YOU! are their research subject.
-
Since two years there is a foundation who is looking into this condition. You can support them by setting up a monthly donation, even if its a small amount it will add up if everyone does it.
So there is light. Dont allow JQD, to paint this lopsided picture, where only he represents light, while everyone who opposes him wants people to committ suicide.
Even though I have explained this to him, he will continue to repeat this lie.
I have been reading the forum and I stumbled upon two stories of guys complaining about sciatic nerve pain.
viewtopic.php?f=3&t=974&p=4407#p4407
Hope88 symptoms -
high bloodpressure
erectile dysfunction
genital shrinkage
brighter scrotal hair
back pain
hip flexor pain/sciatica nerve
JG symptoms -
ED
Penile/testicular/pelvic pain
Sensitivity decrease
sciatic nerve pain
The interesting thing is that neither of them have low libido or any mental sides. Pretty much all of their symptoms overlap with CPPS/pelvic floor dysfunction.
It supports my theory that severe pelvic floor dysfunction can irritate or cause dysfunction of the sciatic nerve.
JG makes a similar revelation in this thread:
Unlucky? In truth, we were all playing with fire really and we’ve got burnt. Not much else to it