Larry and I have been PM'ing and Larry is generously allowing us to use his words and story on the website. Thanks Larry, I will try to get it posted soon -- hopefully this weekend.
Mo, I like your idea of using more quotes from PN patients. There are plenty of places we could put them on the website.
Violet
A Message of Hope
Re: A Message of Hope
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: A Message of Hope
Larry, your story and quote are now on the website at these links:
http://www.pudendalhope.org/node/2
http://www.pudendalhope.org/node/87
Thanks again.
Violet
http://www.pudendalhope.org/node/2
http://www.pudendalhope.org/node/87
Thanks again.
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: A Message of Hope
Beautiful! Love the story, Larry's quote, and the photo. Thank you Larry and Violet.
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: A Message of Hope
Thank you so much for sharing this story. After just receiving a small taste of improvement with a low dose Ketamine infusion your story brings hope to me that with tenacity and repeated treatments of the Ketamine it will bring me a pain free or near pain free life.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
Re: A Message of Hope
Larry's quote on the home page is so inspiring and encouraging! Thank you Violet and Larry!
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catherine a
- Posts: 291
- Joined: Sat Sep 18, 2010 4:46 am
- Location: Perth Western Australia
Re: A Message of Hope
It is so great to hear Larry's story . Larry, you are one very brave and humble man. Thank you for coming back to this forum and giving HOPE to others.
Like you, it has taken me 4 years post surgery (France) to get to a tolerable pain level. Life will go on for us. You're such an inspiration and it's so good to know that you didn't ever give up hope that things would change for the better. Our lives have changed in so many ways as a result of this horrendous condition. Some good things are bourne out of bad. We have had our lives turned upside down and for some people their lives have been torn apart. You didn't give up.
I wish you the very best in life.
Catherine (Australia)
Like you, it has taken me 4 years post surgery (France) to get to a tolerable pain level. Life will go on for us. You're such an inspiration and it's so good to know that you didn't ever give up hope that things would change for the better. Our lives have changed in so many ways as a result of this horrendous condition. Some good things are bourne out of bad. We have had our lives turned upside down and for some people their lives have been torn apart. You didn't give up.
I wish you the very best in life.
Catherine (Australia)
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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larry91555
- Posts: 17
- Joined: Tue Sep 20, 2011 3:37 am
Re: A Message of Hope
Hello Catherine: It's wonderful that you are doing well after 4-years post-op. Your story, like mine, is hopefully just enough to give others hope that they can get better over time. You are so right in that our lives have changed in so many ways as a result of this horrendous condition. The feeling of empathy for all those that are now in the midst of this disease really is enough to break ones heart. When people write on this board - describing their suffering - I can almost feel it myself. I wonder world-wide how many people suffer? Think of the hope that could be given to others if more who are cured or have made tremendous progress would return to this board to help others.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: A Message of Hope
Thanks Violet and Larry,
Your story is so generously written Larry, and I know it has and will continue be helpful to so many of us. I am glad that it has been 'saved'( thanks Violet) as I'm sure people will read it again and again.
Your story is so generously written Larry, and I know it has and will continue be helpful to so many of us. I am glad that it has been 'saved'( thanks Violet) as I'm sure people will read it again and again.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.