Health Organization for Pudendal Education

Eva, are you saying it's higher up than the vagina? -- in other words you can't reach the pain to press on it from the vagina?

Violet

when i tried the ice in a condom i just barely touched where the pain is and when i used a dialeter to reach it i inserted a 8 inch one all the way and again found it but just barely ,pain seems to be at very end of vagina or possibly past it ,i dont know i know vagina stretches so its confusing my pt once told me she could reach it finger i explained no way its way to deep for finger my husband dosent even go near it during sex ! i was thinking it could be my bladder directly but i havent had luck with ic diet i also havent been able to follow it at best this is frustrating the deep pain comes and goes but its everyday for a few hrs the genital pain is constant and is only at end of vulva where hair and thigh meet has been for past few months but it seems to change and i have sharp abdominal and lower back left sided pain also the back pain is constant the abdominal comes and goes . i think my symptoms changing is why i had a hard time telling if pt worked because at the time i had more deeper pain than genital and a ton of yeast infections im going to explain this to my ob mayb i can get her 2 do more pt there was a time when i went to my pt with genital pain and whatever she pressed on helped this was one of the only things i remember helping it was relaxing to have her press on tummy though also .im going for mri nxt wk hoping something is found its the potter one and im getting it for free thank god i guess its a new program they r doing has nothing to do with insurance im gonna call mon get all the details .i woulda paid sum money but free is def whats up ! i know the mri is not always accurate what other things could it show ? will it show if i have other nerve damage ? or ligaments ?

update violet i cant get mri my ob misinformed me that i could get it thru a program that is free the program is actually discounted and i still cant affored it so i wont b able to get it at this time im very upset i wish they didnt get my hopes up

Eva, that would be very disappointing to get your hopes up like that. So your best bet might be to have a local radiologist use the same settings as Dr. Potter -- but it would have to be a facility that has 3T MRI capabilities.

It sounds like your pain is deeper than what I experienced -- and maybe in the middle, not to one side or the other? I'm not sure what that means. The pudendal nerve innervates the lower 1/3 of the vagina but you can also have pain anywhere along the nerve where it is injured. It's very possible you have more than one thing going on. Often pudendal neuralgia does not occur by itself but has other associated problelms with it.

Violet

yeah pain seems 2 be like 8 or 9 inches deep and is more in middle ,i think it may b my bladder & if i have pudendal issues also than i may have ic and pudendal damage or i have ic and vulvadynia of some sort ,ob just gave me lidacaine dosent help at all ,i need to be strict with the ic diet to really tell if its food related ,i always seem to mess it up when i try so i have work to do there whats weird is how pain moves around for past few months its been only on end of genitals right before the butt where the thigh meets and on vulva only in that area burns and feels sore all the time .i am pretty sure the deeper pain is my bladder from how badly it hurts after i drink coffee ,which i gave up ,how badly it hurt to insert a catheter and i always feel like i have to pee in same area with pain .im going to make an apt with a new urologist also . i would like to have another baby one day but im very concerned i will get worse .do u have any kids violet ? if i am blessed with one more i will b grateful k honey thanks for everything

Eva, it's pretty common for pain to move around for people with PN. Also, the pudendal nerve innervates the bladder sphincter so that could be one of your issues - making you feel like you have to pee all the time.

Yes, I have two kids but they were already teenagers when PNE hit. There are gals who've had successful pregnancies and deliveries with PNE but they had C-sections. I think it would be incredibly difficult to take care of children if you have severe pain though. I don't know if I could have taken care of little ones. I guess you do what you have to do but wow, it would be hard.

Violet

yes i would have a c-section for sure right now my pain dosent get to the point where it takes me from my responsibilities but i really push myself hard on days i wish i could b in bed ,im so scared of getting worse ,i need to get better i def dont have more pain when sitting i can sit for very long periods with no change in pain but i really just wanna get to bottom of this all its been so long thanks girl

Eva, I get pain flares after my injections. I was told it was normal due to the anesthetic wearing off and it taking a few days for the steroids to work. Hang in there. Unfortunately for me the shots didn't work and I am scheduled for surgery. Good luck to you!

i dont remember having any issues over th 5-6 that i have had, including last week. Nerve blocks don't block like novacane for a long term, except for a few hours after the procedure if they use a local to see how accurate the block was.