New- Pudendal or Vulvodynia?

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New- Pudendal or Vulvodynia?

Postby jo1 » Tue Oct 19, 2010 11:04 am

Hi
Just stumbled across this site- link from Vulaval Pain Society and would be grateful for any advice please. I had a difficult vaginal delivery 4 years ago and have suffered with vulval pain since, diagnosed with vulvodynia, I have had botox in my perenium to help muscles relax which works for about 3 months at a time- the pain has always been localised to perenium/vaginal entrance following sex or tight trousers, tampons etc and lasts about 1 week (swells, hurts to sit etc...) However, over the past few months I have had increased discomfort in my vulval area- even without provoking it with intercourse- it's like electric shocks/ burning/ or even like being bitten by something (there's nothing there!) these attacks usually last 10 days and I take Nurofen for the pain throughout. I am just so fed up, I'm 27, and I thought i'd found a way to manage this and now something else has been thrown in and i feel like I am about to start the diagnosis and hit and miss treatment all over again- nothing happens quickly as it is trial and error.
Because my pain is intermittent I just wondered if it sounds like a problem with pudendal nerve or vulvodynia as previously diagnosed? My symptoms must be very mild compared with other chronic sufferers on here so please accept my apologies for moaning!
I am seeing my gynae tomorrow who's lovely, and am trying to articulate the actual pain and pattern of it, I would actually love to go in and just say "it hurts, i don't know why, it just hurts and please can you fix it!"
Many thanks and regards

Jo
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Re: New- Pudendal or Vulvodynia?

Postby Griff522 » Tue Oct 19, 2010 2:09 pm

I was diagnosed with vulvodynia as well. I really dislike that diagnosis because it basically means "pain in the vulva". I needed to know what could be causing the pain! My dr's weren't interested In finding that out. They just wanted to give me meds for the pain and get me out of their office.

I think the main symptom (besides the constant burning) that led me to believe that my problem was pudendal related was the difficulty with sitting. It's been a year so far for me and I still don't have a diagnosis but hope to have one soon

I hope your gynecologist is more helpful than mine.
Burning vulva pain began 10/09
Treated for SIJD 9/10 and burning stopped and pain localized to rt side
Surgery w/ Dr Dellon 5/11 - didn't help my pain
2012 - PT, massage therapy, and ART therapy from chiropractor
MRI showed labral tear and US of groin found hernias
2/13 - surgery for sports hernia
5/13 - still have obturator internus spasms
5/13 - appt with ortho spine dr
8/16/13 - Arthroscopic surgery to rt hip for FAI and torn labrum
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Location: Michigan

Re: New- Pudendal or Vulvodynia?

Postby Karyn » Tue Oct 19, 2010 2:26 pm

Griff,
I just wanted to let you know how much I admire your determination. I agree with you 100% - You can NOT fix, cure of heal something if you don't know what it is or what's causing it! I know things are really hard right now, but I sincerely believe you're going to get to the bottom of this and be OK.
Warmest of 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.
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Re: New- Pudendal or Vulvodynia?

Postby Violet M » Tue Oct 19, 2010 11:13 pm

Hi Jo,

A damaged, entrapped, or compressed pudendal nerve can be the cause of vulvodynia. If you are lucky, your gyn will be willing to study up on pudendal neuralgia and help to diagnose what is causing your vulvodynia. One diagnostic tool used by the PN docs is to press along the course of the pudendal nerve via the vagina to see if that elicits pain -- usually at the ischial spine or the alcock's canal. If so, there is a good chance you have pudendal neuralgia with a possible entrapment. You can ask your gyn to do this type of exam. You could also ask your gyn to refer you to a physical therapist who treats people with pudendal neuralgia because sometimes an experienced physical therapist can help with the diagnosis. You can check out the list of PT's. http://pudendalhope.org/node/16 Sometimes the pelvic floor muscles are in spasm and impinge on the nerve, causing the symptoms of pudendal neuralgia with vulvodynia. A good PT can help with this problem.

Yes, the symptoms of pudendal neuralgia can come and go. With some people, it progresses to constant pain, with others it does not. Before your gyn appt. tomorrow you may want to print out some info from our website -- such as the FAQ's, symptoms, and diagnosis page.

Good luck with your visit tomorrow -- I hope your doc will have some answers for you.

Violet
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.
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Re: New- Pudendal or Vulvodynia?

Postby catherine a » Wed Oct 20, 2010 6:44 am

When we interviewed Prof. Vancaillie about PN the question about Vulvodynia, Vaginismus, Vulva Vestibulitis etc, being related to the Pudendal nerve was raised. His answer was 'Absolutely' it is all related to the Pudednal nerve.
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
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Re: New- Pudendal or Vulvodynia?

Postby jo1 » Wed Oct 20, 2010 1:24 pm

Thank you all so much for your replies. I saw my gynae this morning and she has referred me to a vulval specialist- Professor Wendy Reid on Harley Street- she sounds fab, seeing her next month- feeling quite optimistic that I may be closer to a solution and I can raise a possible pudendal nerve problem with her. I am a woman with a plan!
Thanks again and i wish you the very best in seeking relief for your conditions.
Jo
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Re: New- Pudendal or Vulvodynia?

Postby Karyn » Wed Oct 20, 2010 1:46 pm

Hi Jo!
I'm so happy to hear about your upcoming appointment! Hoooraaaaay! :D
There's nothing more encouraging than a woman with a plan - you go, girl!! Please let us know how you're progressing!
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.
User avatar
Karyn
 
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Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: New- Pudendal or Vulvodynia?

Postby A's Mommy » Wed Oct 20, 2010 4:54 pm

Violet M wrote:

A damaged, entrapped, or compressed pudendal nerve can be the cause of vulvodynia. If you are lucky, your gyn will be willing to study up on pudendal neuralgia and help to diagnose what is causing your vulvodynia. One diagnostic tool used by the PN docs is to press along the course of the pudendal nerve via the vagina to see if that elicits pain -- usually at the ischial spine or the alcock's canal. If so, there is a good chance you have pudendal neuralgia with a possible entrapment. You can ask your gyn to do this type of exam. You could also ask your gyn to refer you to a physical therapist who treats people with pudendal neuralgia because sometimes an experienced physical therapist can help with the diagnosis. You can check out the list of PT's. http://pudendalhope.org/node/16 Sometimes the pelvic floor muscles are in spasm and impinge on the nerve, causing the symptoms of pudendal neuralgia with vulvodynia. A good PT can help with this problem.





Violet


Violet, I couldn't agree more with what you said. This is 100% true and I am convinced that vulvodynia is really a damaged pudendal nerve. Griff and Jo, you are on the right track joining HOPE and I pray that you get in the right direction with your treatment plans. We need to get the word OUT!! Is there a Facebook PNE page?

Warmly,
A's Mommy
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
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Re: New- Pudendal or Vulvodynia?

Postby Griff522 » Wed Oct 20, 2010 4:57 pm

Yes there is a support group on facebook and I am a member. Just go to the search box at the top of your facebook page and type in Pudendal neuralgia support.
Burning vulva pain began 10/09
Treated for SIJD 9/10 and burning stopped and pain localized to rt side
Surgery w/ Dr Dellon 5/11 - didn't help my pain
2012 - PT, massage therapy, and ART therapy from chiropractor
MRI showed labral tear and US of groin found hernias
2/13 - surgery for sports hernia
5/13 - still have obturator internus spasms
5/13 - appt with ortho spine dr
8/16/13 - Arthroscopic surgery to rt hip for FAI and torn labrum
Griff522
 
Posts: 317
Joined: Sun Oct 10, 2010 7:42 pm
Location: Michigan

Re: New- Pudendal or Vulvodynia?

Postby catherine a » Thu Oct 21, 2010 9:54 am

Jo,

Have you printed out the letter to the medical profession? it was drafted by HOPE directors . I'll post it here again in case you haven't seen it yet.

Catherine
HOPE Letter to Medical Profession.docx
(78.25 KiB) Downloaded 253 times
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
catherine a
 
Posts: 291
Joined: Sat Sep 18, 2010 4:46 am
Location: Perth Western Australia

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