Creating Massive Pelvic Pain Awareness Campaign

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Re: Creating Massive Pelvic Pain Awareness Campaign

Postby Lernica » Sat Feb 05, 2011 12:00 am

Violet,

I gave the DRAFT version of the document to my gyno today and he was very interested in it. He read several sentences from the document out loud to his team in the room which included his ob/gyn nurse and two med students. He also said he would help spread the word about PN once the draft is made final. So I look forward to sending it to him once it has been approved by the board. Great work!

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
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Re: Creating Massive Pelvic Pain Awareness Campaign

Postby pianogal » Sat Feb 05, 2011 7:04 am

oh, this makes me so happy!
(ps- if you could fit in "tingling" next to pricking, would be awesome. That was my first symptom for the first 3 months other than urinary frequency and continues to happen frequently.)
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
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Re: Creating Massive Pelvic Pain Awareness Campaign

Postby Violet M » Sun Feb 06, 2011 1:51 am

Thank you Lernica. It's going to take all of us together to make an impact. ;)

Pianogal, tingling is already in there up by numbness.
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: Creating Massive Pelvic Pain Awareness Campaign

Postby pianogal » Sun Feb 06, 2011 5:58 am

oh, oops! Thank you!
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
pianogal
 
Posts: 438
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: Creating Massive Pelvic Pain Awareness Campaign

Postby scaredgal » Mon Feb 07, 2011 3:35 pm

I plan to take this to my internist on Wednesday. One of the doctors I went to early on said there was no such thing as PN. I'd love for them to spend a day in our shoes.

Is there a copy without "DRAFT" across it?
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Re: Creating Massive Pelvic Pain Awareness Campaign

Postby Lernica » Mon Feb 07, 2011 4:26 pm

Violet M wrote:

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.



SG,

I asked the same question last week and this was V's response. If you print the document you will find that the word Draft is actually not that visible.

Hugs,

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
Lernica
 
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Joined: Fri Jan 14, 2011 10:31 pm

Re: Creating Massive Pelvic Pain Awareness Campaign

Postby scaredgal » Mon Feb 07, 2011 4:30 pm

Thanks, Lernica!
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Re: Creating Massive Pelvic Pain Awareness Campaign

Postby Violet M » Tue Feb 08, 2011 5:18 am

scaredgal wrote:Is there a copy without "DRAFT" across it?


There will be shortly. Please bear with us as we are in the middle of a director's meeting and are waiting for several more votes on this. Also, we are not fully tax exempt yet so until we achieve 501c3 status I will have to remove that statement in the last paragraph. I just put it in the draft to make sure it would fit.
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: Creating Massive Pelvic Pain Awareness Campaign

Postby scaredgal » Wed Feb 09, 2011 8:04 pm

Hi everyone,

Just wanted to share that I had an appointment with my internist today (for other non-PN related issues) and provided him the Drafted PN Hope letter. He had heard of the pudendal nerve before, but was not really familiar with the havoc this creates with our lives. I told him that it really had totally ruined my life from my former PN days and wanted to emphasize to him not only the symptoms to look out for, but how catastrophic this is for the patients that suffer with it. He asked if he could keep the letter and I said, of course, it was his copy.

I told him that PN has literally destroyed my life. I have always been such an athlete, taken such good care of my body, prohealth, etc. etc. and now I really no longer even had the desire to live anymore. I think he was very surprised to say the least. I told him I was trying to spread this around to all of my doctors (I plan to share this with my regular ob/gyn as well) because I wanted him to be aware that if any patient ever comes to him with perineum pain or pain that would correspond to the region of the PN nerve and can't sit - to remember me and help the person get a diagnosis - it's not just in their head!

I don't really hold much hope for my personal case, but maybe if I can leave this world with a small mark of letting doctors know about this condition to further diagnosis and treatment - maybe that was God's only purpose in my sorry life. Maybe someday no one will have to live with this disease that's worse than death.
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Re: Creating Massive Pelvic Pain Awareness Campaign

Postby Violet M » Thu Feb 10, 2011 5:20 am

Scaredgal, there is hope for you. I thought there wasn't hope for me but there was so I believe there is hope for you too. ;)
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.
User avatar
Violet M
 
Posts: 5464
Joined: Mon Sep 06, 2010 6:04 am
Location: United States

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