Alipasha,
I thought it would be important as an introduction to show the original papers from those doctors that describe the pathology and the anatomy very well. I agree that they publish newer papers but they are often a continuation and they assume that you have read the original papers.
Creating Massive Pelvic Pain Awareness Campaign
Re: Creating Massive Pelvic Pain Awareness Campaign
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
Re: Creating Massive Pelvic Pain Awareness Campaign
Ezer,
I might have some documents from Sophie(Dr. Bautrant's secretary) in French which she gave me last year.I believe that you have to translate them again from French into English like the original papers.Although,I have to check where I have kept them.
Have you seen any improvements so far after your respective surgery?
Warmest of Regards,
Ali
I might have some documents from Sophie(Dr. Bautrant's secretary) in French which she gave me last year.I believe that you have to translate them again from French into English like the original papers.Although,I have to check where I have kept them.
Have you seen any improvements so far after your respective surgery?
Warmest of Regards,
Ali
Diagnosed for PNE by Dr. Jerome Weiss in June 2007.Started PT with Amy Stein in NYC.
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
Re: Creating Massive Pelvic Pain Awareness Campaign
Ali,
have you an MRI done with Dr. Hibners' team?? Where did they inject the contrast dye?
My duaghter is going to have that MRI done and she is 7. I am trying to be as prepared as I can be. Did the dye cuase ant burn or flare?
have you an MRI done with Dr. Hibners' team?? Where did they inject the contrast dye?
My duaghter is going to have that MRI done and she is 7. I am trying to be as prepared as I can be. Did the dye cuase ant burn or flare?
Re: Creating Massive Pelvic Pain Awareness Campaign
There is a "fighting PNE" I saw on A's mommy's ?profile? On here.
We need to raise awareness. I am suggesting that if you can copy and paste it somehow and put in on FB or myspace or one those things, and then aske all your freinds to post it we could reach thousands with it in a short time. It will get the conversation going..and questions...it might be a good way to get the word out?????? Just a thought
MOM
We need to raise awareness. I am suggesting that if you can copy and paste it somehow and put in on FB or myspace or one those things, and then aske all your freinds to post it we could reach thousands with it in a short time. It will get the conversation going..and questions...it might be a good way to get the word out?????? Just a thought
MOM
Re: Creating Massive Pelvic Pain Awareness Campaign
Hello all,
Is there an updated "undraft" version of this letter? I am seeing my gyno this week and would like to start spreading the word. Thanks.
Lernica
Is there an updated "undraft" version of this letter? I am seeing my gyno this week and would like to start spreading the word. Thanks.
Lernica
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Re: Creating Massive Pelvic Pain Awareness Campaign
Here is the final draft of the letter. I read some of the articles and choose the ones that best support what we have on the document.
Mom, I used the word "prickling" instead of "itch" because the literature explicitly says that pruritis (itch) is not one of the symptoms of this illness but it makes a clarification that it is more of a prickling feeling that is not relieved by scratching.
I also took out "loss of sensation" because the Nantes article states that a loss of sensation is more likely to be due to a sacral root problem.
Lernica, I'm sorry, I am not authorized to take the draft watermark off until the directors vote on approval of the letter since it has the organization logo on it. We are having our meeting next week and hope to vote on it then.
Please point out anything that needs editing or any glaring inaccuracies. Thanks,
Violet
Mom, I used the word "prickling" instead of "itch" because the literature explicitly says that pruritis (itch) is not one of the symptoms of this illness but it makes a clarification that it is more of a prickling feeling that is not relieved by scratching.
I also took out "loss of sensation" because the Nantes article states that a loss of sensation is more likely to be due to a sacral root problem.
Lernica, I'm sorry, I am not authorized to take the draft watermark off until the directors vote on approval of the letter since it has the organization logo on it. We are having our meeting next week and hope to vote on it then.
Please point out anything that needs editing or any glaring inaccuracies. Thanks,
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.
Re: Creating Massive Pelvic Pain Awareness Campaign
Three comments:
1. "foreign body sensation" is a very understated way of saying "I FEEL LIKE THERE IS A HOT POKER UP MY BUTT". I believe that Hibner in his 2010 article actually identifies the feeling of a hot poker as one of the most common symptoms. Could we include it here?
2. " . . . often misdiagnosed as" , should we add "endometriosis", which the doctors were telling me for ten years?
3. In my country, at least, dependant is spelled "dependent".
Great document; I'm taking the draft to my gyno this week.
Warm regards,
Lernica
1. "foreign body sensation" is a very understated way of saying "I FEEL LIKE THERE IS A HOT POKER UP MY BUTT". I believe that Hibner in his 2010 article actually identifies the feeling of a hot poker as one of the most common symptoms. Could we include it here?
2. " . . . often misdiagnosed as" , should we add "endometriosis", which the doctors were telling me for ten years?
3. In my country, at least, dependant is spelled "dependent".
Great document; I'm taking the draft to my gyno this week.
Warm regards,
Lernica
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Re: Creating Massive Pelvic Pain Awareness Campaign
I love you guys! 
Thanks for your collective wisdom.
Lernica, I managed to fit "hot poker" by rewording some things. I had to put endometriosis under History because I could not fit it otherwise.
Thanks for your collective wisdom. Lernica, I managed to fit "hot poker" by rewording some things. I had to put endometriosis under History because I could not fit it otherwise.
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.
Re: Creating Massive Pelvic Pain Awareness Campaign
Violet,
You're welcome and thank YOU for writing this up. I think it will be extremely helpful in spreading the word about PN. If I may make a final suggestion (and excuse me for the lateness), "quest" in the last line might be better than "crusade" which brings to mind genocidal purges in the middle ages.
All the best
Lernica
You're welcome and thank YOU for writing this up. I think it will be extremely helpful in spreading the word about PN. If I may make a final suggestion (and excuse me for the lateness), "quest" in the last line might be better than "crusade" which brings to mind genocidal purges in the middle ages.
All the best
Lernica
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Re: Creating Massive Pelvic Pain Awareness Campaign
Good point, Lernica.
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.