Health Organization for Pudendal Education

Apparently it won't be an MRN, just an MRI. I really don't know if they'll find anything different than last year. All I can do is hope they can find my vein!

The receptionist I spoke with at the hospital where I'm having it done had never heard of it, so she made me hold while she went and asked a technician.. He confirmed they don't do the MRNs at this hospital..

DES, do you know if it's going to be a 3T MRI? I wonder if your radiologist would be willing to contact Dr. Potter to find out the protocol.

It would be nice if your hubby could be with you for the EMG -- so you could have a hand to squeeze and someone to distract you.

Violet

Hi Violet,

I'm not really sure what it's going to be, but I guess I can email and find out, perhaps with Dr Potter's info so he can consider it. Is there a consult fee involved for Dr Potter?

I did ask hubby if he's allowed to be in the room with me while I have the EMG test, if he'd do that, and he looked like I was asking him to take the test for me instead! I know he's quite squeamish about most things medical, so I don't know if he'd do it or not.. I know it would help me to have somebody there to distract me and support me, but I don't want him to feel like he has to be there if he'd rather not.

DES, I don't remember anyone mentioning a consult fee but I can't say for sure if there is.

There's no blood involved with the test so I think your husband should be fine, especially if he faces toward your head and doesn't try to watch.

Violet

Oh DES, I had to laugh at your description of your husband's reaction to your request! My husband's very squeamish too. After passing out during my daughter's birth 20+ years ago, I knew I couldn't count on him to be present at most of my medical interventions!

Thanks Violet and Lernica..

I did ask my hubby again if he'd come into the room with me on Friday to give me support, if it's allowed. I told him to just look away or look at me, not at what's happening. Surprisingly, he said he would. I just wonder if they'd give him one of those doctor masks to wear.. over his eyes!

Hi all, am a newcomer to this site and totally overwhelmed by my newfound condition and can see I'm amongst like minded sufferers which saddens me. Never knew such a debasing condition could be out there and never felt so isolated from friends and family whilst trying and failing to keep my dignity, feeling so humiliated and embarrassed because of the extremely personal nature of this painful condition. I've apparently been experiencing a 'flare' having started and been in decline since March 2012 descending at a constant pace with symptoms now 24/7. My pain is severe in the perinium area with acute labia pain, voiding issues and unable to sit at all spending my days lying in bed or slow, slow walks (or crying). After many and varied consultations I've found a specialist in pudendal nerve treatments (in Australia) and diagnosed with pudendal neuralgia in early Sept 2012. Ive had an MRI which found a nerve entrapment near Alcocks canal (sorry but I'm clueless with medical terminology), had a guided block administered in both buttocks without significant response, been undergoing PT by a specialist physio without success, am taking 300mg Lyrica x 2 daily & 10mg Endep. After last consult with PT I've been rescheduled for another Block in 4 weeks to gauge any response with a view to further treatment and possible surgery. It's scares me but I'm not responding to anything since commencing therapy with specialist and PT and am in such constant and unrelenting pain that I'd jump at anything to ease my misery. That might be a bit shortsighted of me but just need to have my pain ease before I can think more logically. Would appreciate any suggestions, guidance that might be offered in my journey into pudendal neuralgia..

Welcome,
I agree with your observation that it is hard to say that not only you have this condition but we are many in this journey. You are doing the right things so far and can check the FAQs on the home page for more guidance. Not sure thhe amounts for the meds you are on or if higher dosage would be needed, some of the others we take require certain levels before they really help with the pain. Someone else will know and let you know. Other ideas for pain are Tramadol at 50mg which worksfairly well for nerve pain flares and sometimes better than the something like oxycodone. I am so sorry you could not get ahead of this before hitting the 24/7 phase, hopefully you can soon get this turned around. If you are entrapped unfortunately PT generally does not help but usually a block will give temporary relief if they hit the right spot. Sorry I can only sympathize with you and say you are not alone and hang in there.
Janet

Thank you Janet, your words are comforting. I agree it is time to revisit my medication with my specialist to see if I can reduce my pain levels and will discuss alternatives as well. I will drop in on the FAQS section and thank you for the tip. Education can be a wonderful aid, I'm glad I've found this site. Cheers, Judy

Hi Judy,

Welcome to the forum. It can be pretty discouraging when your current treatments don't seem to be working and I completely understand your feelings of isolation. It takes a lot of patience while you go through the maze of treatments but it sounds like you are in good hands if you are working with the Australian PN team. I agree with Janet that you might want to try some opioid medications but to think of them as a temporary measure until you find a treatment that works for you. Ice gel packs can also be very effective for pain. Some topical medications such as extra strength vagisil help vulvar/labia burning or possibly a lidocaine/baclofen combination.

Hope you find some answers here.

Violet