Describing Pudendal Neuralgia

[FinalCountdown]

“It isn’t the kind of pain that makes you scream. It’s the kind of pain that makes you quietly cry, wears you down by never going away, and makes you give up hope.”

[PNVeteran]

Hi FC, sounds like you'r having a down day.. do you want to share how things have been for you lately?

I'm new here so I don't know other folk's stories. But I do feel for you.. it is tiring.. it can drag you down. Sometimes I just accept it let myself feel how I feel but I don't cry much anymore. I find crying makes me feel worse... because the grief can be very heavy. I like to watch a touching movie on occasion.. so I know I can still cry. On slightly better days I will find comedy to watch and find I can still have a belly laugh which I find reassuring. Have you tried antidepressants?? I'm on 3 of them and I don't plan to stop them.. ever.. It doesn't make the bad days better.. but I can recover from them quicker. Anyway if there is anything we can do .. let us know.. also hope you have a support person(s) right now. Take care..

[April]

Hi FC,

That description is spot on. We are here for you and we understand. Let us know if we can help.

Take care,
April

[Violet M]

“It isn’t the kind of pain that makes you scream. It’s the kind of pain that makes you quietly cry, wears you down by never going away, and makes you give up hope.”

Now I'm worried about you, FinalCountdown, because I thought you were doing somewhat better. Are you still in the quietly crying stage or are you describing the past here?

Violet

[FinalCountdown]

My problems are so complex that I honestly wonder if they’re even worth describing.

My PNE surgery with Michael Hibner was a (technical) success. I consider Michael a friend - we’ve even exchanged personal emails. But I won’t abuse that friendship for medical stuff - I had a telephone appointment with him a few weeks ago ($300, btw - he takes no insurance), and he said my problems sound like they can be helped by pelvic PT (I have an outstanding pelvic-floor therapist). But after three visits, each time I’ve pretty much been in bed 22-24 hours a day with pain flares.

I had eight (yes, eight) neurectomies and three tenotomies during 13 years of misdiagnosis which Dr. Hibner finally confirmed and corrected. And now, I think I have an ilioinguinal neuroma among pudendal issues arising from my sacral nerve roots (I was in bed for those 13 years). I’m too worn out to keep trying, and I don’t have the energy to fight anymore. Don’t worry, I have no plans to off myself, but boy I wish I could die peacefully in my sleep.

I have wholly inadequate pain control, and doctors just slough me off when I say I need palliative care. Whatever. This has been a tough millenium.

[PNVeteran]

Hi again FC,

I can really hear your fatigue.. things have really gotten rough for chronic pain patients.. I spent 30 minutes trying to get 2 Vicodin per day from my new care provider.. an NP.. who isn't allowed to prescribe opioids and declined to consult with anyone. Just so annoying... yet she asked if I had been going elsewhere to get pain medicine. If I say how bad the pain is.. Then I'm too needy.. probably addicted.. but If I forgo the medicine for a while (cause I'm sick of arguing) then I must not have the pain I say I have. The level of paranoid suspicion has reached an all time high... When I first started nursing things were even worse than now.. because they didn't have any hospice care.. so the era of palliation ensued and I do think doctors went overboard.. medicine can just be so "faddish" and now everyone repeats the same garbage--"opioids don't treat nerve pain".

In a saner country..like France, they don't use a lot of pain medicine, because they get to work.. asap.. finding the right interventional treatments. In the US everyone is worn down to their very bones before anyone does anything.. or it's hit or miss... or only if you have lots of money. And I am sure in a saner country.. they understand that palliation should not wait for the last 6months of your life! How many of us are secretly looking forward to a terminal illness? I feel lucky.. in a way.. that I did not end up with multiple surgeries.. maybe you are genetically prone to scar tissue formation.. But I also have a complex history of trigeminal neuralgia and PN (how does one get 2 rare disorders?)... maybe I have a genetic weakness to the HSV viruses because I am riddled with post herpetic neuralgias.. and they all act up together sometimes.. PN is bad everyday... then the TN acts up.. then multiple other PHN sites start up.. and the docs eyes glaze over. Anyway.. I was more forceful in my self advocacy today.. but then I run the risk of getting kicked out of the clinic I go to. It will be awhile till all these "aholes" get a taste of something difficult for themselves or someone they love.

The most recent scholarly discussion of PN/PNE mentions Ketamine troches.. I bet that would help you.. also maybe methadone.. back when I was pretty much forced to keep working (why?).. I was on both fentanyl and methadone which allowed me to work full-time for an additional 6 years.. or as someone else mentioned buphrenone (without the narcan or whatever its called.. in your case). They can stop the endless spiral of tolerance and the ups and downs of shorter acting opioids but only if you have a doctor who won't turn around and take you off them as it is very, very, painful to be weaned of pain medications when you have significant pain. But please, please be careful.. we don't want anyone to die of accidental overdose in the chronic pain community. What we can do to help each other is provide that necessary "reality check" when we get knocked around by the ignorance of others.. just know you are sane.. and your experience is valid.. it helps us keep going.. Don't you think so? Anyway the article can be found by searching "NCBI" "Stat Pearls" pudendal neuralgia... it was recently updated to include "risk of addiction" crap.. but otherwise it is a solid work on the available treatments for PN. Take care

[FinalCountdown]

I’d say “bless all of you” if I was religious, and mean it.

Wouldn’t it be nice if we could have a live chatroom instead of a forum?

Can this wonderful connunity accomododate that? I have a (formerly) VERY popular website, run entirely by me, that I’d be happy to host (if the technology is there), maybe even nightly.

I do NOT wish to take away from this wonderful forum (who runs it? Is it using Invision?), and would want to work with the moderators here. I NEED to talk, live with people who are in constant neuropathic pain, and let me add: I would give up my life so that ANY ONE OF YOU could be normal again.

Let me know your thoughts. Moderators, please write me? I don’t know who you are.

I am your friend despite being from shithole America. I hate our country and apologize for it.

[FinalCountdown]

I’d say “bless all of you” if I was religious, and mean it.

Wouldn’t it be nice if we could have a live chatroom instead of a forum?

Can this wonderful community accomododate that? I have a (formerly) VERY popular website, run entirely by me, that I’d be happy to host (if the technology is there), maybe even nightly.

I do NOT wish to take away from this wonderful forum (who runs it? Is it using Invision?), and would want to work with the moderators here. I NEED to talk, live with people who are in constant neuropathic pain, and let me add: I would give up my life so that ANY ONE OF YOU could be normal again.

Let me know your thoughts. Moderators, please write me? I don’t know who you are.

I am your friend despite being from shithole America. I hate our country and apologize for it.

I have long wanted to conceal my identity, but I’m very close to being at the point where I don’t care. Michael Hibner once told me I may be the most “well-known” of his patients (due to my forum) and other than some intensely personal stuff I’ve written here, I wouldn’t care who knew.

Just throwing this out here. My forum has gone from “famous” to “ghosttown” because I’m too badd off to run it properly.