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A blog, it turns out, about pudendal neuralgia (not vulvodynia, as we thought for two years) - treatment, pain, other assorteds.
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minimal stuff about me
- Kate
- United States
- I'm married, have a young child, and developed pudendal neuralgia in January 2007 - literally overnight. Well, the Sx appeared overnight. I have another blog, but that doesn't feel like the right forum to write (vent, scream, bitch, etc) about this, so here we are, at vulvodyniasucks.blogspot.com.
7 comments:
I'm so sorry you cannot find relief. I hope that Dr. Goldstein can help you. That's the worst thing about pudendal neuralgia: pain meds don't work on it. It's nerve pain, not real pain. All the pain meds can do is make you less cognizant and indifferent to the pain.
Have you tried Neurontin or Lyrica?
My heart goes out to you. I know what you're going through. You're very strong and brave to be fighting this as hard as you are.
The pain meds can really be a pain, and I mean that literally. My wife was put on Valium suppositories and switched antidepressants (low dose ones for pain management) at the same time in an effort to help with her tight pelvic muscles to try and remove the remaining pain she had.
Well wouldn't you know it instead of getting better things started getting a lot worse again. Do to a random happening she stopped using the Valium suppositories and things seem to be moving in the right direction again.
So hang in there and don't be afraid to switch things up if they aren't working for you. Good luck with Dr G. We will be anxiously awaiting your report.
I feel and hear your pain.
I've suffered with PNE since 1981 with little or no help from the medical community. It wasn't even diagnosed until 1999.
The doctors have tried to kill me with narcotics and anti-depressants which do no good whatsoever for me. Lyrica and Neurontin are useless and make me feel like I'm in another world. We need meds for nerve pain - why don't they have any?
If you've had the condition longer than six months nerve blocks are ineffective.
I was on methadone for four years but it shut down my system and nearly killed me, then the doctor treating me abandoned me and left me for dead. I had to go into a secondary type of rehab facility because I was a danger to myself and others. I was taken from the hospital in handcuffs and shackles to the state lunatic asylum because of my second suicide attempt. I'm not crazy just insane with physical pain that will not abate.
When I got out I went to a pain specialist in my local city and was told I was a drug seeking addict. After that I gave up.
All I take now is Tramadol due to the good graces of my internal physician but most days I would rather just be dead and out of pain. I'm not living, I'm surviving and there is a huge difference.
There are only 8 doctors in the entire world that can effectively treat PNE and only 4 or 5 are in the U.S. You have to go to France for the finest care. Believe me I've researched this for six years.
I have an old site you are welcome to peruse and see if you can find something useful.
Best of luck and yes, we need the medical community to help us but I don't see that happening anytime soon.
I have written every organization with little to no response and the national PNE society never answered my letters.
God speed,
DJ Normand
My site:
http://americaspaindemic.bravehost.com/index.html
How true your comments are -All of them. I am am a 49 yr old woman who has suffered from this little piece of HELL since I was 48. There are no current medical answers nor is there anyone in our U.S. medical community seem to give a DAMN about the severity and intensity of the pain. It may not be terminal in itself but it causes terminal SUICIDES. The pain is unbearable, untreatable, and you want to know the beat part????? THIS DAMN CONDITION IS F'ING INVISIBLE! YEP NO ONE CAN SEE IT HURT SO NO BELIEVES IT EVE EXISTS! The doctors look at us like we are crazy hypocondrites and so do our families and friends. (For most part). Im a registered nurse so it's awfully hard to work and hold my CROTCH!!!! I WANT TO DIE.
Nice blog, thank you for sharing it.
Buy the best pain killer , Gabapentin 100mg and get faster relief from neuropathc pains.
ALL THANKS TO DR WILLIAMS
I was diagnosed of neuralgia in 2011, I have tried all possible means to get cure but all my effort proved abortive, until a friend of mine introduced me to a herbal doctor , who prepare herbal medicine to cure different kind of diseases including neuralgia , when i contacted this herbal doctor via his email, he sent me the neuralgia herbal medicine via courier service, when i received the herbal medicine he gave me step by step instructions on how to apply it, when i applied it as instructed by Dr Williams i was totally cured from this disease within 1 months of usage. any body with similar problem can Contact this great herbal doctor via his email drwilliams098675@gmail.com for advice and for his product,and thanks to you admin for such an informative blog.
As a sign of gratitude for how my husband was saved from neuralgia, i decided to reach out to those still suffering from this.
My husband suffered neuralgia and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony of so many people who was cured from neuralgia. and so many other with similar body problem, and they left the contact of this doctor who had the herbal cure to neuralgia. I never imagined neuralgia has a cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life.neuralgia has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony .
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