Health Organization for Pudendal Education

This morning I had a follow-up appt with the Vulvar Pain clinic. As usual with this hospital system, I was seen by a different dr than before. She asked me if the neurontin was helping and I said it took the edge off but was not "helping" my pain. I told her I didn't want to treat the pain any longer but find out what was causing it. Her response was "we don't know what causes vulvodynia so we just try to find the right meds to help you with the pain." I basically told her I wasn't interested in any more pain meds and she assured me that was all they could offer. These people are dr's - aren't they even a little curious about what causes their patients such agony?!

I want an MRI done by Dr Potter but I'm just trying to figure out which dr of mine to ask for the rx.

I'm so sorry!!! It's so frustrating when the dr's don't listen to you!! Mine actually figured it was all in my head and I needed to "learn to live with it"!

Please keep pushing for tests. I had a SSEP done (the neurologist ordered it saying he didn't think it was my pudendal nerve, but he would test for it anyway). This proved to him my pudendal nerve is acting abnormally. Keep pushing, you deserve answers.

Hang in there!!

Tracy

Thanks Tracy. I'm hanging. I will have an EMG at my appt with Dr Conway in January.

Griff522 wrote:Thanks Tracy. I'm hanging. I will have an EMG at my appt with Dr Conway in January.

Griff522, how long did it take to get your phone consult with Dr. Conway? Tomorrow will be 3 weeks since I called for a phone consult with Dr. Conway. They told me I should hear back from him in 10-14 days. I called earlier this week and they said he's just running behind, but I know now I'll probably be pushed to February at least for an appt. I too am trying to get a for sure "diagnosis" and not just treat the pain...I hope this is the right step. I feel your frustration!

Hi Faith,

I would say it took a few weeks. I was starting to think I wouldn't hear from him and I think I posted on this forum about the fact that I hadn't heard anything and then like the next day he called. It made me wonder if someone from his office read my post or if it was just a coincidence. Then when he called me he wasn't even in his office. He was at a pelvic pain conference in Chicago. I have a feeling he will call you very soon!

BTW I lived in the Louisville area for over three years and absolutely loved it!

Griff522 wrote:Hi Faith,

I would say it took a few weeks. I was starting to think I wouldn't hear from him and I think I posted on this forum about the fact that I hadn't heard anything and then like the next day he called. It made me wonder if someone from his office read my post or if it was just a coincidence. Then when he called me he wasn't even in his office. He was at a pelvic pain conference in Chicago. I have a feeling he will call you very soon!

BTW I lived in the Louisville area for over three years and absolutely loved it!

Thanks Griff! I hope he calls soon too. I lived in Louisville for 2 years too! My husband and I loved Louisville too! A lot of our friends are there,but we moved to be closer to my family and I am glad we did now because they help us out a lot when I am feeling bad.

this organization has a utube video that can be shared on FB.
We all need to post and ask our FB friends to share, together we all can raise awareness and take the stigma out of this.
Please HELP!

I received a pm today and it made me realise that I never came back to update you all! I'm so sorry, especially as the support you gave me was so appreciated!
In short, pudendal nerve damage diagnosed, was put on 6 month course of lyrica which turned me into a madwoman! Came off them, my original gynaecologist referred me to a pain specialist dr kothari at spire Alexandra and I am now 90% cured! She pinpointed and injected the damaged part of the nerve on 4 occasions over 18 months - an absolute revelation!! She understood the pain and didn't make me feel like it was all in my head.
Dr kothari is amazing and changed my life!! Sounds dramatic but the relief was immense. I also had womb ablation as I found the monthly fluctuations increased my pain so now I'm good!
Thanks for your support and thoughts and best wishes to those of you going through this.

jo1-

Were the injections "nerve blocks" or ablations? Where is this doctor that you are referring to?

Sorry they were nerve blocks, intended to provide temporary relief for a few months at a time but after the 4th in January I haven't needed a 5th! Apparently they can turn off the pain signal permanently and I have no 'numbness' it's almost like me pre-kids.
I am based in the UK and dr kothari is in Kent. The injections are done in theatre using electrical currents and scanners pinpoint the pain- I had mild sedation so I was awake enough to talk them through it and tell them exactly where it was. My point of injection was deep in my left buttock although my pain was vaginal entrance. Painful as hell but worth it!!

I think the womb ablation helped as I no longer have periods I'm not aggravating with tampons and not bloating putting pressure on damaged nerve, this was done by my gynaecologist separate to the pain clinic.
I honestly felt exasperated trying so many experimental treatments without long term success but feel like they've finally cracked it.