Creating Massive Pelvic Pain Awareness Campaign

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Charlie
Posts: 214
Joined: Fri Sep 17, 2010 11:48 pm

Re: Creating Massive Pelvic Pain Awareness Campaign

Post by Charlie »

Scared Girl I think everyone will be able to relate to your post. As Violet said there is hope for you. So keep on going. I know people that have overcome this.

Don't be afraid to share your feelings though and use the forums as means of support as well as information. I have made some great friends through forums like this who have got me through some troubled times.
Tried numerous medications as well as a long period of myofascial physical therapy combined with meditation/relaxation. My pelvic floor muscles are now normal and relaxed on exam ( confirmed by many Pelvic floor PTs) yet my pain remains the same. Also have intense leg pain. Deciding on next treatment.
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Creating Massive Pelvic Pain Awareness Campaign

Post by Karyn »

Charlie wrote:Scared Girl I think everyone will be able to relate to your post. As Violet said there is hope for you. So keep on going. I know people that have overcome this.
I agree, too! You CAN do this and you WILL get better!
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.
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Creating Massive Pelvic Pain Awareness Campaign

Post by Violet M »

Here are the final copies of the handout for medical professionals. There's one in color and one in black and white.
Overview of pudendal neuralgia for medical professionals.pdf
(80.59 KiB) Downloaded 316 times
Overview of pudendal neuralgia for medical professionals - grey.pdf
(66.79 KiB) Downloaded 258 times
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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mom
Posts: 181
Joined: Sat Dec 04, 2010 3:15 pm

Re: Creating Massive Pelvic Pain Awareness Campaign

Post by mom »

Thanks for all the hard work
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Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Creating Massive Pelvic Pain Awareness Campaign

Post by Lernica »

Good job! I have sent the document to my ob/gyno with a request that he (1) send it along to his colleagues in the ob-gyn community and (2) consider adding PN to the curriculum of the medical school at which he teaches and/or any medical conferences. I also offered to speak to any class or conference about my experience with the condition. (We have worked together in the past on education initiatives regarding endometriosis.)

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
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Creating Massive Pelvic Pain Awareness Campaign

Post by Karyn »

The letter is PERFECT! Thank you so very much for all the time and effort you put in to create it!
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.
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pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: Creating Massive Pelvic Pain Awareness Campaign

Post by pianogal »

Violet, THANK YOU for making my little hope become a reality! Now let's all spread the word!

Thank you so much again Violet!!!
-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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mom
Posts: 181
Joined: Sat Dec 04, 2010 3:15 pm

Re: Creating Massive Pelvic Pain Awareness Campaign

Post by mom »

I was just googling symptoms again for the heck of it to see what would come up, and on womenshealth.com there was a post by a woman with constant genital itch just like my daughter. She has been to countless dr's and such dealing with this for over a year....anyway I was thinking if we posted or commented on other places and directed people to "hope" it might help spread the word. Just a thought?
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MovinCA
Posts: 21
Joined: Sun Oct 16, 2011 9:26 pm
Location: California

Re: Creating Massive Pelvic Pain Awareness Campaign

Post by MovinCA »

I like the idea of the butterfly ribbon. What color would be used? I found some links with information on colors other organizations have used. It looks like Chronic Pelvic Pain awareness groups use light green. Would it be good to align with them?
http://www.fundraisingforacause.com/ri ... color.html
http://en.wikipedia.org/wiki/List_of_awareness_ribbons
Fell on tailbone at the age of 10 (about 24 years ago) and sat differently ever since.
Diagnosed with PN in 2006.
Successfully manage symptoms and pain with physical therapy.
Experience painful flares periodically, often brought on by long car rides.
Successfully made it through pregnancy in 2012 and love being a mom!
Blog: http://walking4hopepn.blogspot.com
Donation Page (Fundraising Money Goes to HOPE): http://www.razoo.com/story/Walking4hopepn?referral_code=share
Twitter: @walking4hopepn
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MovinCA
Posts: 21
Joined: Sun Oct 16, 2011 9:26 pm
Location: California

Re: Creating Massive Pelvic Pain Awareness Campaign

Post by MovinCA »

Hi Everyone,

I will be walking to raise money for HOPE in a local community walk in Southern California on July 15. If you know anyone who would like to donate, please have them visit my blog at walking4hopepn.blogspot.com, or they can visit the fundraising site directly at http://www.razoo.com/story/Walking4hope ... code=share.

For donations of $25 or more, I will be happy to wear the name of someone you'd like to donate on behalf of around my neck during the walk. I'll be sending photos to Violet to share.

I'd like to thank Violet and the board for approving this fundraising effort.

~Movin
Fell on tailbone at the age of 10 (about 24 years ago) and sat differently ever since.
Diagnosed with PN in 2006.
Successfully manage symptoms and pain with physical therapy.
Experience painful flares periodically, often brought on by long car rides.
Successfully made it through pregnancy in 2012 and love being a mom!
Blog: http://walking4hopepn.blogspot.com
Donation Page (Fundraising Money Goes to HOPE): http://www.razoo.com/story/Walking4hopepn?referral_code=share
Twitter: @walking4hopepn
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