senoz, to make it clear, I have recovered with no medical intervention after 2010. Only mental work. It took 2 years. I take no pain medication and sit for hours. I do not have pelvic pain anymore. I also had a MRN that showed abnormality of the pudendal nerve on the right side.
It is not for everyone of course but you should think about it with the stress at the onset of your pain and considering the really minor incident that took place.
The abnormalities you doctor found can be the consequence of your muscles spasming due to the pain. Doctors in western medicine are trained to find abnormalities in the area that you indicate as painful. They will find you a diagnosis. It does not mean it explains the pain.
I am sorry you had a useless vestibulectomy. Please don't let them do another one. Why would it work this time?
Hello, new here
-
nonsequitur
- Posts: 114
- Joined: Wed Nov 11, 2015 8:08 am
Re: Hello, new here
“Unexpressed emotions will never die. They are buried alive and will come forth later in uglier ways.”
S.Freud
S.Freud
-
John Carter
- Posts: 92
- Joined: Sat Mar 26, 2016 2:25 am
- Location: trapped in Texas... DFW...
Re: Hello, new here
I was on 600mg of lyrica and that wouldnt do squat... Antidepressanst also do nothing for me.... Stress doesnt so much cause the condition as much as it contributes to increased entrapment in so many... The only medicine that has ever physically helped the entrapment in me was strong anti Anxiety meds... That would help break the increased suffering cycle.... I know exactly what u mean bout not being able to get out like regular people... Right when this happened to me i was about to graduate and start my career traveling all over the world... I was planning on learning several languages... Had learned my first and was about to start on a second....
That feels like another life.... I have been injected so many times with roids it is freakin insane.....
know exactly the whole alone situation.... Even when u start with family and friends around the way this pain makes u feel alone can not be understated.... It will drive u down.... The uncertainty is like a mountain on our shoulders.... The factors that come along with all of this are legion.... It does freakin suck how it is a war and it feels like we are the only soldier in it....
Doctors saying they havent seen anyone as young with this is just a croc of shit... The fact is that they hardly see anyone at all with this ever.... That is the lack of recognition that is so hard to deal with.... Except for others on this board or others i have never met anyone that really understands....
I dont got alot of upbeatness to share but i do got alot of understanding and empathy.... The girls here would know more about another girls case... I am basically another soldier of suffering though.... Spent years in bed... Have fought it for forever it seems... One year will feel like forever... I know how it all feels...
god have mercy on us....
That feels like another life.... I have been injected so many times with roids it is freakin insane.....
know exactly the whole alone situation.... Even when u start with family and friends around the way this pain makes u feel alone can not be understated.... It will drive u down.... The uncertainty is like a mountain on our shoulders.... The factors that come along with all of this are legion.... It does freakin suck how it is a war and it feels like we are the only soldier in it....
Doctors saying they havent seen anyone as young with this is just a croc of shit... The fact is that they hardly see anyone at all with this ever.... That is the lack of recognition that is so hard to deal with.... Except for others on this board or others i have never met anyone that really understands....
I dont got alot of upbeatness to share but i do got alot of understanding and empathy.... The girls here would know more about another girls case... I am basically another soldier of suffering though.... Spent years in bed... Have fought it for forever it seems... One year will feel like forever... I know how it all feels...
god have mercy on us....
-
nonsequitur
- Posts: 114
- Joined: Wed Nov 11, 2015 8:08 am
Re: Hello, new here
John Carter, Have you tried medications like Butrans transdermal patches (Buprenorphine)? They worked great for me at the time.
“Unexpressed emotions will never die. They are buried alive and will come forth later in uglier ways.”
S.Freud
S.Freud
Re: Hello, new here
John Carter,
The feelings this condition brings are very hard to deal with. I mean all those negative feelings I had before this condition are nothing like how I feel now. You're right, no matter how our friends and family sees we suffer, they don't understand it at all. I hope nobody feels this way, and we all get better.
I think stress that we have adds up years and years, and along with anatomical tendency, cause this condition. And the vicious cycle of stress, anger, sadness make it worse and eventually harder to cure.
I plan on asking my doctor to prescribe Cymbalta and see how it helps. Lyrica doesn't help at all, I mean maybe without it I would've been much worse I don't really know so I don't want to be off them.
I read somewhere that Vulvodynia and pelvic pain (pudendal etc.) are seen much more among Type A characters (stressful, anxious etc.) and it seems very likely.
The feelings this condition brings are very hard to deal with. I mean all those negative feelings I had before this condition are nothing like how I feel now. You're right, no matter how our friends and family sees we suffer, they don't understand it at all. I hope nobody feels this way, and we all get better.
I think stress that we have adds up years and years, and along with anatomical tendency, cause this condition. And the vicious cycle of stress, anger, sadness make it worse and eventually harder to cure.
I plan on asking my doctor to prescribe Cymbalta and see how it helps. Lyrica doesn't help at all, I mean maybe without it I would've been much worse I don't really know so I don't want to be off them.
I read somewhere that Vulvodynia and pelvic pain (pudendal etc.) are seen much more among Type A characters (stressful, anxious etc.) and it seems very likely.
-
John Carter
- Posts: 92
- Joined: Sat Mar 26, 2016 2:25 am
- Location: trapped in Texas... DFW...
Re: Hello, new here
Well... i havent had Buprenorphine.... I was on fentanyl patches.... for a long time... That was with Dr Witten that kept me alive for years after comin back from failed surgery in France.... I am on absolutely nothing right now after the woman that took over his practice started kickin patients off medicine after the new opiod laws came into effect here...
The only thing i can do right now is starve myself to avoid the extra entrapment that comes with any meal....
I have a appointment tomorrow with a pain doctor but i am expecting nothin or worse given all the experiences i had with so called pain drs in the first years of getting PNE... the pain doctors only helped in keeping me undiagnosed in the beginning...
not gettin any hopes up after all the experiences of getting them shot to hell so so many times
was on cymbalta too... cept for medicine that masked the pain only anti anxiety medicine physically fights the muscle entrapment....
I knew all this was going to happen when 2015 started and they required us to go in every month just to basically beg to live for one more month... Stockpiled what i could... had to completly detox all alone... cant even get treated as good as dope addicts... kinda hard doin anything in a med world that makes u wait 2 months at a time for a appointment....
really sick of just all the nothingness that this disease gives us... Would be nice to be part human atleast... cant even play video games cause of how the muscles tense up for so many many reasons.... I will say it again... I could be cured.... The one nerve root from my lumbar spine just controls PNE... with absolutely no other anatomical control... i think it really just controls the piriformis.... every time i had the L4 root blocked i would be 100% human again.... doesnt matter to the medical community though... If i could attempt surgery on myself i would do the neurectomy myself..... Cowardly drs here in america made getting that surgery impossible after 2000 though... If i could go back i wouldnt of done all the expensive PNE surgeries and instead of just gone to foreign countries where it is still possible to get a neutrectomy.....
The only thing i can do right now is starve myself to avoid the extra entrapment that comes with any meal....
I have a appointment tomorrow with a pain doctor but i am expecting nothin or worse given all the experiences i had with so called pain drs in the first years of getting PNE... the pain doctors only helped in keeping me undiagnosed in the beginning...
not gettin any hopes up after all the experiences of getting them shot to hell so so many times
was on cymbalta too... cept for medicine that masked the pain only anti anxiety medicine physically fights the muscle entrapment....
I knew all this was going to happen when 2015 started and they required us to go in every month just to basically beg to live for one more month... Stockpiled what i could... had to completly detox all alone... cant even get treated as good as dope addicts... kinda hard doin anything in a med world that makes u wait 2 months at a time for a appointment....
really sick of just all the nothingness that this disease gives us... Would be nice to be part human atleast... cant even play video games cause of how the muscles tense up for so many many reasons.... I will say it again... I could be cured.... The one nerve root from my lumbar spine just controls PNE... with absolutely no other anatomical control... i think it really just controls the piriformis.... every time i had the L4 root blocked i would be 100% human again.... doesnt matter to the medical community though... If i could attempt surgery on myself i would do the neurectomy myself..... Cowardly drs here in america made getting that surgery impossible after 2000 though... If i could go back i wouldnt of done all the expensive PNE surgeries and instead of just gone to foreign countries where it is still possible to get a neutrectomy.....
-
nonsequitur
- Posts: 114
- Joined: Wed Nov 11, 2015 8:08 am
Re: Hello, new here
I saw that the CDC released a new very stringent opioid guideline in 2016. While it is not mandatory, I am sure that most doctors will comply as to not get in trouble.
http://www.cdc.gov/media/dpk/2016/dpk-o ... lines.html
It is a charade because the CDC does not offer any alternative for chronic pain patients. They write "Nonopioid therapy is preferred for chronic pain ". Duh!. We get that so what do they suggest as an alternative? nothing.
I think it is terrible news for all of you sufferers. You are paying for irresponsible people that use Opioid medication for recreation. It is very sad.
I was on Oxycodone then Butrans and that made my daily life tolerable. Nothing else helped. I am not sure what I would have done without. I was 8 years on Opioids and I discontinued fine. It was not pleasant but I made it through and I have not touched it for 2 & 1/2 years.
http://www.cdc.gov/media/dpk/2016/dpk-o ... lines.html
It is a charade because the CDC does not offer any alternative for chronic pain patients. They write "Nonopioid therapy is preferred for chronic pain ". Duh!. We get that so what do they suggest as an alternative? nothing.
I think it is terrible news for all of you sufferers. You are paying for irresponsible people that use Opioid medication for recreation. It is very sad.
I was on Oxycodone then Butrans and that made my daily life tolerable. Nothing else helped. I am not sure what I would have done without. I was 8 years on Opioids and I discontinued fine. It was not pleasant but I made it through and I have not touched it for 2 & 1/2 years.
“Unexpressed emotions will never die. They are buried alive and will come forth later in uglier ways.”
S.Freud
S.Freud
-
John Carter
- Posts: 92
- Joined: Sat Mar 26, 2016 2:25 am
- Location: trapped in Texas... DFW...
Re: Hello, new here
I was told to edit this... I am not talking about serious pain conditions like ours.. I am talking about just pathetic drug addicts that are just scared of life///// The people that kill themselves using the medicine that we need so badly... thus they doom us to unspeakable torment
yea i have had to learn to fight so hard against the disease that detoxing from so many meds was absoluly nothing to me....
Only the Strong Willed can fight this disease...
Only the weak willed cowards allow themselves to become slaves to medicine we need to live.... They are weak pieces of shit in my book... I consider pathetic addicts as nothing more than cowards afraid of the world... Weak willed people who dont deserve to exist... They are just sacks of nothing... And their cowardice punishes us the strongest willed of about anyone on this earth...
I feel very strongly about this travesty against us the strongest fighters that exist
yea i have had to learn to fight so hard against the disease that detoxing from so many meds was absoluly nothing to me....
Only the Strong Willed can fight this disease...
Only the weak willed cowards allow themselves to become slaves to medicine we need to live.... They are weak pieces of shit in my book... I consider pathetic addicts as nothing more than cowards afraid of the world... Weak willed people who dont deserve to exist... They are just sacks of nothing... And their cowardice punishes us the strongest willed of about anyone on this earth...
I feel very strongly about this travesty against us the strongest fighters that exist