What type of surgery are you talking about? Thanks
I highly doubt there is permanent nerve damage. Inflammation causing temporary problems with nerves, maybe. Mine and others (temporary) 100% and beyond recoveries would not be possible otherwise.
Not that this makes it any better given that PFS is likely permanent/ too difficult to solve anyway.
It doesnāt matter. Regardless if the nerves lack neurotransmitters/are not working/inflamed/blocked and you cannot get them to consistently function then the effect is the same.
I am going to transcribe the conversation i recorded with doctor antolak, this is after i had got my 3rd and final injection of methylprednisolone mixed with a numbing agent. I got this done at st. paul radiology where they used an MRI to get the needle close enough to the pudendal nerve. The hope is that by releasing the steroid on the nerve it would help with any possible inflammation.
voice: How were you able to tell that i was having weaker erections by the goose bumps on my lower back region?
antolak: Well its not that your having weaker erections, its that your sympathetic nervous system is being stressed by the pudendal nerve irritation, and with that you get the signaling to the sacral levels and in turn they feed into the sympathetic nerves that go over the skin in that area and thats where the goose bumps come in.
voice: So the next stage if this injection does not work is surgery right?
antolak: Yes, but i have not operated on any men for just having poor sensual pleasure, I had a couple men i operated on for just poor sensation.
voice: Is there an MRI where you can see the actual nerve inflamed.
antolak: You can do a magnetic resonance neurography, but i donāt do them because it does not help me clinically, some people want them and some doctors order themā¦
voice: but i mean before surgery is there a clear way you can tell that the nerve is inflamed
antolak: I do a MRI of the pelvis before surgery.
voice: and what were you saying about the puffier skin surrounding my penis?
antolak: Lets see let me go back in my notes, when you first visited me you had a place on the tip of the penis where you couldnāt feel 110 degrees, and then you got areas that felt heat or cold where you shouldnāt of felt it, and thats where you have your pudendal neuropathy showing up.
voice: Its pretty rare if it is anything involving the brain correct?
antolak: I would need a neuroscientist to answer that one
voice: I met a guy off the propecia website recently that has some similar side effects as me, as far as numbness in the genital area, the drug is doing something strange to are systems.
antolak: I know then you have to ask the question if you had any problems with the nerve before the drug, and there is no way to know that.
voice: If it is a problem with a neurotransmitter there is probally not a lot of treatment for that right?
antolak: You would want to see the worlds best neuroscientist working with cerebral impotence, see what i mean you got the pudendal nerve you got the spinal chord nerves, you got the brain and wow that would be a a tough one to answer personally i couldnāt do it.
voice: Well my main problem is still no pleasure when i orgasm, i can get it up when ever i want to its just weak, and my erections have been weaker do to probally stress, depression and axiety.
antolak: or if you are taking any medications for depression what are you taking
voice: I am on no meds for depression just aderall, and my main concern is still the orgasm sensation and i am guessing that is tough to fix
antolak: that it is sir.
antolak: I canāt think of anybody to recommend for an orgasm problem have you seen anyone at they mayo clinic
voice: ya, they said good news its all in my head
antolak: The pin prick changes and the warm temperature changes are not in your head, ok. Yes if i were 26 and had sexual issues expessically if i knew what i was missing i would be torqued. It would be like a pin ball machine in my head bouncing around. It sounds like propecia could have caused this and your secondary emotional responses are very ressonable considering the circumstances.
Voice the rest of the gland is ok and just the pudendal nerve is affected?? This is very strange to me.
What sort of surgery is he referring to?
I guess my cousin is also in this crap, he has no sensitivity in his penis tip and also pain during erection but after Saw Palmetto, that is a very strange finding but i would say it could be the infection underneath
Youāre going to have invasive surgery based on a diagnonis from goose bumps on your back? Careful, donāt fall into the same trap many PFSers already have.
Please describe this, is it actually on the penis or around the base of the penis? Also, echoing solonjk, please describe the surgery. Thanks
the puffiness around my skin i guess would be like a corn dog, where i get an erection but the skin around the penis is spongie, but it is not puffy on the head.
as for surgery it is very very unlikely that doctor antolak would perform surgery on me, like in the conversation i posted he said he has never performed surgery on a man just for sensual pleasure alone.
and you can bet i would need hard evidence to show me that the nerve is inflamed before ever being operated on.
Another Dr. told me that several PFS patients have had problems with there pudendal nerve and they are working on a test to test the nerve as we speak.
I assume my problem deals with the brain sadly. I spoke to a doctor online who performed a test where they had a woman orgasm while she got an MRI on her brain. I talked to this doctor about maybe being able to try this MRI while orgasming to see if it lights up in certain areas of the brain like it should. If i were to get this i would not be able to have another brain scan for about 2 years. The doctor responded back to me and he does seem interested so maybe i will give that a try.
So the interior of the penis is rigid but there is a type of soft structure on the outside (excluding the normal hard head)? The penis isnāt bendable? Is the erection normal sized, smaller, or larger than it should be? Is there sensitivity difference between the head and shaft?
there is sensitivity changes on the head but its not like my penis is completely numb, the erection is a little bendable but i can achieve sex most of the time. It is difficult to identify a lot of my side effects because i was a virgin prior to trying propecia so the only comparisons i can make are to masturbation and the few times i had oral sex before this drug. I am not sure how sensitive the penis is supposed to be i remember my orgasms being amazing, but i donāt remember just touching myself and getting an immense amount of pleasure. When i had oral sex before this drug i remember having feelings of excitement but the feeling on my penis was not super pleasurable i donāt know what is normal i guess.
An erect penis should not be bendabe, it should feel hard, and should be highly sensitive.
I know it pretty damn wellā¦this drug is fucking evil! sensitivity is a thing of the past now
I was hoping to get peoples opinion on this.
I have too options right now, first would be the ideal answer to my problem wait for the class action law suit and then hope they can get medical research done on this problem and find out why this drug causes these problems. The problem with this choice is class action law suits take any where from 2 to 4 years to resolve, merck has made it clear they are going to fight tooth and nail. Research studies cost any where from 100,000 to 2 million a study and there will have to be several done before they can get real backing behind it. So we are probably looking at several years before there could be an answer if there is an answer.
My second option is Surgery for pudendal nerve decompression this has a 60 to 70 percent success rate with patients with pudendal neuralgia. I was diagnosed with pudendal neuralgia and I was given 3 tests to prove this, one was a pin prick test, the other was a warm temperature test, and the other was electric motor nerve test, I had these test done twice just to be sure. Most People that have PN have a lot of pain, but i do not. All the patients seem to have some problem with sexual function though. I am still worried that this could be the wrong diagnoses and that maybe propecia screwed up nerutransmitters instead, but it is hard to refute that i did not feel 110 degrees on the tip of my penis, i also get goose bumps when i orgasm a sign of problems with my sympathtic nerves which is caused by the pudendal nerve being stressed, and i have goose bumps on my lower back as well which is a common sign of sexual fuction issues.
The surgery seems to have low risks and doctor antolak has performed over 700 of them. I also talked to a doctor who has a lot of pfs patients and he said several of his patients have pudendal neuralgia. We know that numbness can be caused by nerves could this be a lot of are problems are.
Please let me know your opinion, surgery is a big choice and i do not want to screw up my body any worse, but my hormones look great no drug i have tried has helped, this could be my answer. I donāt know that i can wait 5 to 15 years for a solution from research studies i have already had this problem for 5 years.
Any insight onto whether the surgery was conducted on PFS patients and it so what were the outcomes? I also have very similar symptoms to you and have been diagnosed with pudendal neuropathy using the tests that are currently available. Unfortunately, the field of neurology is currently able to diagnose problems but offers very few treatments.
Like yourself, I do not have pain but I do have near complete sexual dysfunction and every once in awhile Iāll get a twinge of nerve activity in my perineum that could maybe best be described as what one would expect a pinched nerve to feel like. Its a sharp, fleeting twinge of sensation that feels similar to what it feels like when you hit your funny bone.
The next phase of research (which seems to be coming as soon as we collectively raise $50,000) may determine a more specific direction to go for a treatment. It is not guaranteed, but it is also a real possibility. Personally, I would not have a surgery which may or may not work. If it ends up that our bodies are in fact rejecting androgens, then it does not seem like a surgery would help much anyways. This is just my opinion, but I would try your hardest to be patient, and perhaps there is a more definative direction to pursue for treatment options on the way. I know it is awful and suffering five years already is more than any person deserves, but in my opinion, surgery is not going to be your fix. Feel better man, and good luck to you in whichever direction you go.
I have to echo Lennonās thoughts here. Give it another six months to a year and see what we turn up. We may not have a treatment but may have a much better idea of which roads we need to follow.
Is there a place to donate to get to 50,000, sign me up, also i feel like my side effects are pretty rare even for this site. My main problem being that i do not have any pleasure in orgasm. The medical community knows jack shit when it comes to orgasm its a very difficult problem to solve, and one that might not get attention even if they do propecia research studies.
Decreased pleasure or no pleasure during orgasm isnāt extremely rare here. Or were you referring to something else?
Having done needless surgery, I must sound a resounding NO to getting cut up.
The inflammation observed in you has been discovered in multiple PFSers and counting.
Ideas on the source of this inflammation have been expressed elsewhere. Letās just say that not everyone thinks itās irreversible.
What Iāve found is that whatever the speciality of the doctor you go to, thatās how heās going to see the problem and treat:
ā¢ A surgeon will propose cutting you up
ā¢ A hormonal expert will offer you hormones
ā¢ A naturopath will cannot and so will never give you a pharmaceutical
ā¢ A shrink will tell you itās all in your head (havenāt been to one, but thatās what I hear, lol)
There are exceptions, there are good, independent doctors with integrity or at least enough decency to say āI donāt know.ā But most think they knowā¦reminds me of this quote:
āThe greatest obstacle to discovery is not ignorance. It is the illusion of knowledge.ā
Hehehe, nice post. I might add:
āWhen all you have is a hammer, everything looks like a nailā
- Maslow