Thanks for that, Xhorndog. I was hoping you’d post due to your experience. I could be wrong but I think the doc in question has given up on those surgeries for us due to similar outcomes.
Somebody tipped me off to this thread. I’m not actually following a lot of threads at the moment. Can’t say it enough: before operating on ANYTHING, never mind your dick or dick nerves, get a second and third and fourth opinion. Get 10 opinions. Unfortunately, I think a lot of people, fin-affected and otherwise STILL jump into certain surgeries (needlessly). I understand the emotion and decision-making involved. You want to rule something out, you trust the expertise, you talk to patients for whom a particular surgery has worked. But I just don’t believe the success rate statistics that any doctor offers anymore. Take your time in making the decision, make it an unemotional one.
i am going to see a neurologist about getting some more test done, but i think you guys have talked me out of surgery and also another doctor that is close to the issue of pfs advised against it as well.
I do have another issue though, for those of you that have been diagnosed with pudendal neuralgia there is a very annoying therapy that is recommended. Basically you have to sit on a donut pillow when sitting, but you also have to try and avoid sitting as well, and the number one thing that is recommended is NO EXERCISE. Any exercise can irriate the nerve and we all nerves take a long time to heal so this therapy is recommended to do for years.
So if it is a problem with my pudendal nerve than i should not exercise, but what if it is something hormone wise are maybe problems with nerutransmitters than maybe exercise would actually help me.
You see my dilemma.
If you’re concerned with neurotransmitters, you may find this interesting: jackkruse.com/your-gutneurotransmitters-and-hormones/
Can you elaborate on the sitting prohibition? Just how much sitting is overdoing it?
And how exactly does exercise irritate nerves? In a broad sense, I can undertand how overexerting oneself can be detrimental, but I’d like to better understand your advisory and the mechanism. Thanks.
Also, don’t rule out that it’s BOTH neurotransmitters and nerve inflammation…
i guess they say you should always try to stand or lie down when ever possible. Exercise damages the nerve because of the placement, if you ride a bike you are sitting right on the nerve practically if you run it can damage it as well just because of the position of the nerve.
To be honest i don’t feel like it is a pudedal nerve issue with me because of the fact i don’t feel any better after trying this therapy for 9 months, and my nerves actually got worse when i retested and my opinion is because i am not exercising the rest of my body is doing worse.
The not sitting all day makes total sense for overall health, nevermind compressing that area; you inspired me to get a Foam Donut Cushion, complete with a picture of an 85 year old senior citizen enjoying his morning newspaper on the package cover. I don’t know how the fuck to sit on it, though, it doesn’t feel that comfortable. As far as bike-riding—that’s just a no-no for anyone who wants healthy genitals. Data on that has been posted on the forum before.
I don’t know man–I wouldn’t conclude that their therapy rules out pudendal nerve impingement. It’s a very logical area to suspect, and there are a number of PFSers with this diagnosis. Not all docs want to rush to operate or provide cortisone because there is a suspicion of inflammation stemming from infection. So how to treat it is quite up in the air, but it seems legit to have pinpointed that area in my mind.
I am the only patient of doctor antolac that has no pain, most of the symptoms of pudedal neurapathy i do not have. Lets face it doctors are puzzled by are condition its a pretty weird the only other drugs i heard that stay in your system like propecia is SSRIs. Even doctor antolak told me if he was me he would wait for the class action lawsuit, then pool are money together if we win and research this drug. Then we should be able to get an answer if not a solution.
I ended up visiting my dermatologist the other day the one that prescribed me propecia 5 years ago. I pretended like it was my first visit to see how he prescribed it. He told me that propecia had the same side effects as the placebo, and there was nothing to worry about. I then told him the truth that i was suffering for 5 years from that drug. So he is going to use my story as an example for anyone wanting to try propecia, i was not angry at him he was just following Mercks bullshit, and i was the first case he has ever heard of. He also has not heard of propecia updating there prescription info to perminent ED, he said there supposed to send him that info every time they change something on the prescription, so i am not sure about that. Also when he was examining my hair he said i only had about 10% worth of balding, and it got me to thinking i was super paranoid about my hair falling out when i was 21, i pretty much obsessed about it. I wonder if i was ever going bald to begin with, i might of taken this drug for no reason, and if your not going bald and take this drug its gotta really screw you up.
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You are definitely right that a lot of men do end up taking the drug when it is completely unnecessary. However given that you suffer from PFS, it is possible that the response of the drug halted or slowed your hair loss which would have progressed considerably without it.
I was definitely shedding hair at the time I took the medication and in the past couple of years my hair loss is basically unnoticeable.
Who has pfs believes to everything is supposed to fix him, even absurdities like taking tons of nystatin or pulling his dick and even if he knows that will not help it he does it all the same. I pulled my dick for not more than 10 days in january, i ran across penis enlargement and thought it could help me with shrinkage. Since then i saw my improvements stopped and probably i even got worse, my best days in the last 20 months were few days before my penis enlargement folly. Immediately after p. e. i noticed a white spot just under my glans, well spot is not the apt word, it seems to me that blood is not present in that point, the white spot is to my mind a point under my glans with no blood . I’m 99% sure pulling my dick and glans created that “spot”. In addition then my libido got incredibly low and has never returned back and my testosterone now is very low, never been so low since i’ve been having pfs. Assuming that p.e. damaged my dorsal nerve of the penis (i think it is the only damage it can do) now my question is can a damaged nerve in my penis explain the “spot” under my glans like no blood flow there, lack of libido and low testosterone? Or it can be just a coincidence, p.e. did nothing and i’m just experiencing a different form of pfs?
go for ultrasound, white spot might be calcification.
my erections have gotten stronger, partly because i am doing kegel exercises. I have to say though my penis feels even less sensitive then before i am not sure if i will continue doing pudendal nerve therapy ( basically stand all day or sit on a pillow with out doing anything to physical) I have been doing that therapy for almost a 9 months now and i feel like i am just getting worse, maybe because exercise is good for are hormones.
You mention that even before finasterid you thought that you should feel a lot more during a blowjob. Is there any chance that you are circumcised? In the US a lot of men get circumcised and circumcision can cause a decrease in sexual pleasure. There is a whole community dealing with this topic on the Internet. I am circumcised, too, and I had the very same experience before Fin.
Obviously, this only concerns a fraction of your problems. But you might want to check that out.
I am not circumcised.
Voice how has your depression been since stopping Propecia, did it last for awhile after stopping. I seem to have more of the mental symptoms than sexual after stopping
Just got my testosterone and DHT tested. I figure it would be a good idea to test it again to see if maybe there has been a decline. I really wanted to do the 12 hour test taking multiple blood samples over a 12 hour period, but i had to settle for them just taking one sample before 10am. I have not gotten the letter in the mail with the specific details on levels. I only talked to the lady on the phone she said that my DHT is normal and that my total testosterone: 523 (240 - 950 ng/DL) is normal. So the last time i was tested was 4 years ago, it does not seem like a significant drop in my opinion.
hey voice, this is good to hear. Now we “just” need to teach your cells to respond again to DHT.
Hey, voice! How are you doing now?
Not much has changed with my story besides I having a better mood I’ve just been living my life the best I can and not letting PFS run my life. It’s been 13 years with PFS. My erections are decent, my libido is doing pretty well but my orgasms still suck, but I enjoy parts of sex still and I try to stay positive my main advise is don’t obsess over PFS it will just give you higher anxiety.
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As far as the lawsuit goes I have been pretty pissed off. I signed a release to join the settlement but they would not inform me of the amount I would be settling for when they told me the amount I wanted to reject the settlement and keep fighting but there was a no appeal process in my release I signed and I’m stuck with the low settlement. Of course suing my lawyers for breach of duty could be a possibility.
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