Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
My sister has been encouraging me to send a letter to the Dr. Oz show and I happened to look and one of the topics is "have an embarassing problem?"
I sent in a letter explaining my experiene with PN.. anyone else who would be willing to go on camera should also apply to this.. I know it would be humiliating, but it would do wonders for our community and awareness!!
take one for the team
Pevlic pain 8/15/10
Diagnosed with PN 2/11
Currently taking lyrica & cymbalta, PT, acupuncture
ganglion impar block -triggered lower back and sacrum pain
botox injections- caused coccxydynia
Deviated my coccyx 6 months prior- had a horrible case of posion ivy right before symptoms began, connection?
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Hi Jamie,
I agree with Violet - you are indeed very brave! How did you get the contact info to send him the letter? Maybe we could bombard him with our own personal stories?
I'll take one for the team and stand beside you.
Violet - may we include the HOPE Organizations letter?
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Thanks!
Karyn- I just googled Dr. Oz and clicked want to be on the show on his home page.. there was several topics that he will be featuring and I clicked on the "embarassing problem " one.. I was hoping others would follow and that maybe if we got enough people to send their story in, someone would be bound to get picked!!
i mean a disease in which the nerve that is irritated literally means shame, you cant get any more embarassing than that
Pevlic pain 8/15/10
Diagnosed with PN 2/11
Currently taking lyrica & cymbalta, PT, acupuncture
ganglion impar block -triggered lower back and sacrum pain
botox injections- caused coccxydynia
Deviated my coccyx 6 months prior- had a horrible case of posion ivy right before symptoms began, connection?
jamiegross wrote:i mean a disease in which the nerve that is irritated literally means shame, you cant get any more embarassing than that
I couldn't agree more, Jamie! I'll check out his site ...
Hugs,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Have been dealing with burning pain since Jan 2010.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now.
Have been dealing with burning pain since Jan 2010.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now.
Pevlic pain 8/15/10
Diagnosed with PN 2/11
Currently taking lyrica & cymbalta, PT, acupuncture
ganglion impar block -triggered lower back and sacrum pain
botox injections- caused coccxydynia
Deviated my coccyx 6 months prior- had a horrible case of posion ivy right before symptoms began, connection?
I have written several times previously . . . so let's hope this is it! I would be thrilled to be "embarrassed" on national tv!!!
Woke screaming from ab hyst 6/08
Diagnosed w/PN, ilioinguinal & iliohypogastric neuralgias 1/09
3 PN blocks w/Dr Quesada
Rt side TIR, ilioinguinal neurectomy & vestibulectomy 5/09 Dr Conway
Left side TIR 2/10 Dr Conway
Potter MRI 9/10 and consultation w/Loretta & Dr Hibner 12/10
Bilateral ilioinguinal, iliohypogastric, genitofemoral release w/Dr. Hashemi Aug 2011 left & Sept rt
Bilateral TG surgery w/Dr. Conway will be in January 2012
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.