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.