Am I on a good way? Are there really people who got cured?

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Am I on a good way? Are there really people who got cured?

Postby PleaseHelp » Wed Apr 05, 2017 9:12 pm

Hello lovely forum-members,

just got desperate again because there are no chances since months.
First thing: Just wanted to write down how my health changed and maybe somebody could tell me If I am on a good way.
Second: Are there really people who got cured? Because when i look around the forum, it looks like there are are rarely (or nobody) who got fully cured :/

Now to my actually status:

I have nearly no pain / or no pain when I: Lay around, Stand, Going, Running, Or Sitting on my seat ring

I have a pinching pain / uncomfortable prickling when I: Sit without my seat ring, when i put my legs near together, when i cross over my legs, an being naked like under the shower - but i don't get why (maybe because my scrotum hangs then and gravity pulls it down) - When I wear underwear I don't have it like that!

When I compare myself to a 3/4 ago - it is so much better. I had constant pain and the pain was much worse than today. But since a few month, there is like a "stop"... I have read somewhere that nerves heal very slowly, sometimes it takes 1-2 years to get fully recovered. I got that illness since 11 months now. But somehow i don't believe that the healing continues now..

Thank you and greets
PleaseHelp
 
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Re: Am I on a good way? Are there really people who got cure

Postby Violet M » Sun Apr 09, 2017 4:33 am

I think rather than describe people as cured it is better to say that they are currently pain-free. Cured implies that the pain would never return but of course you can damage the nerve again, or re-irritate it again so it wouldn't make sense to say the pain could not possibly ever return no matter what activities you did. So, I am pain-free most of the time but if I do certain strenuous activities I can get the pain to return, although it is much more mild.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Violet M
 
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Re: Am I on a good way? Are there really people who got cure

Postby PleaseHelp » Tue Apr 11, 2017 3:31 pm

Violet M wrote:I think rather than describe people as cured it is better to say that they are currently pain-free. Cured implies that the pain would never return but of course you can damage the nerve again, or re-irritate it again so it wouldn't make sense to say the pain could not possibly ever return no matter what activities you did. So, I am pain-free most of the time but if I do certain strenuous activities I can get the pain to return, although it is much more mild.

Violet

This is the first post i feel depressed about...

So that means it is an non cureable illness and i have to live with it my whole life - there are better times and worse but all in all it doesn't get full healed that i can live like i used to do before ? I always have to do activities that doesn't affect them? No more Car driving or ever sit normally? So Pudendal Neuralgia is a chronic disease ?
PleaseHelp
 
Posts: 43
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Re: Am I on a good way? Are there really people who got cure

Postby Carol18 » Tue Apr 11, 2017 4:40 pm

This is so sad and bad ,I still don't know what and how this happened to me , if is for the rest of my life, and like you I have the same questions can be cured when the nerve heal? It is PN or PNE or something else? Or the people when to visit PN specialist make test and in the end it's unknown what happened or how happen. Or like doctors are still don't know well about PN/PNE or over-diagnose people because they don't know , sometimes patients had just bladder symptoms look like IC but how to know its IC or PN if the diagnostic criteria it's not 100 % right ?
And I think that is the reality, so painful in our souls to know this , we have to try to live our live if no it's going to be worst like hell in this world . :cry:
Keep going and enjoy the good days.
Carol18
 
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Re: Am I on a good way? Are there really people who got cure

Postby Lindsey89 » Tue Apr 11, 2017 8:39 pm

David McCoid is a restorative exercise instructor. He received his PN after 14 years and a failed surgery or 2. If I remember correctly, he said they looked at his PN during surgery and claimed it was in fact PN (or maybe PNE,I forget). But I'm his case, learning restorative exercise have him pain releif and is now an instructor last I heard. You can probably Google him or find him on Facebook.

Anyway,as far as dealing with a chronic illness, it is heartbreaking knowing you have a chronic illness. I have ON,IC,other nerve pain in female area, pain through my legs,and Lyme disease. This is how I feel about being cured. Being cured would be awesome. And I'm not gonna say no one is. But if I got to a place where even with pain I could live a almost normal life, I would be thankful for that. When I had IC all by itself,nothing else that i was aware of or felt, I felt so depressed. But looking back to the place I was then,where I could still walk a lot and drive more if I wanted to, I wish was at a place in my health where I could live more of a normal life. I guess my point is, at the time, I didn't realize that I could live almost normally with my ic at the time.

So right now, I guess I would be happy if I could just get out more and do normal things. Like shopping,grocery store,driving, etc...
But at the time of ic being my only physical health problem aside from sleep issues, and it only making my bladder feel a l
heavy and sometimes burning, it upset me so. I didn't realize at the time that with that problem,in my particular case, I still could have do fun things, but didn't realize it.

I hope and pray pn and whatever is causing this will get better.
Lindsey89
 
Posts: 11
Joined: Fri Mar 17, 2017 6:06 pm

Re: Am I on a good way? Are there really people who got cure

Postby Lindsey89 » Tue Apr 11, 2017 8:39 pm

David McCoid is a restorative exercise instructor. He relieved his PN after 14 years and a failed surgery or 2. If I remember correctly, he said they looked at his PN during surgery and claimed it was in fact PN (or maybe PNE,I forget). But in his case, learning restorative exercise gave him pain releif and is now an instructor last I heard. You can probably Google him or find him on Facebook.

Anyway,as far as dealing with a chronic illness, it is heartbreaking knowing you have a chronic illness. I have PN,IC,other nerve pain in female area, pain through my legs,and Lyme disease. This is how I feel about being cured. Being cured would be awesome. And I'm not gonna say no one is. But if I got to a place where even with pain I could live a almost normal life, I would be thankful for that. When I had IC all by itself,nothing else that I was aware of or felt, I felt so depressed. But looking back to the place I was then,where I could still walk a lot and drive more if I wanted to, I wish was at a place in my health where I could live more of a normal life. I guess my point is, at the time, I didn't realize that I could live almost normally with my ic at the time.

So right now, I guess I would be happy if I could just get out more and do normal things. Like shopping,grocery store,driving, etc...
But at the time of ic being my only physical health problem aside from sleep issues, and it only making my bladder feel
heavy and sometimes burning, it upset me so. I didn't realize at the time that with that problem,in my particular case, I still could have do fun things, but didn't realize it.

I hope and pray pn and whatever is causing this will get better.
Lindsey89
 
Posts: 11
Joined: Fri Mar 17, 2017 6:06 pm

Re: Am I on a good way? Are there really people who got cure

Postby Violet M » Wed Apr 12, 2017 5:33 am

PleaseHelp wrote:So that means it is an non cureable illness and i have to live with it my whole life - there are better times and worse but all in all it doesn't get full healed that i can live like i used to do before ? I always have to do activities that doesn't affect them? No more Car driving or ever sit normally? So Pudendal Neuralgia is a chronic disease ?


I drive a car frequently and I sit many hours a day. I am very, very happy with the results of my treatment and I live a great life. I'm not depressed at all even if I am not completely cured. Life is sooooo much better than it was. Some people may consider themselves cured of PN but most of the people I know have to be a little bit careful. Even so, they have moved on with their lives and are living very good lives.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
User avatar
Violet M
 
Posts: 5462
Joined: Mon Sep 06, 2010 6:04 am
Location: United States


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