New Person with Pudendal Nerve Disorder

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
konedog4
Posts: 192
Joined: Thu Sep 01, 2011 3:42 am

Re: New Person with Pudendal Nerve Disorder

Post by konedog4 »

As I visit this board, I see so many posts that are full of fear, despair, and discouragement. I know this board's acronym is HOPE, so I am going to post a positive entry.

On New Years Eve, 2011, I could not sit or stand without pain. I had to devise a special sitting pad/cushion that allowed me to sit for perhaps 15-20 minutes max. My life was miserable and my attitude was one of despair. I was researching surgical options, and was certain I was destined for surgery and the long post-operative recovery period. Each day was a day that had to be survived, not lived.

Fast forward to today, about 6 months later, and I am typing this note from my desk, sitting on a cushion, but not having any pain anymore. I can stand, swim, run, lift light barbells, and climb stairs again. I feel like I am getting better every day. My medication is being tapered and I am almost medication free.

I post this to give people hope that their situation can get better too.

May God bless one and all,

Jim K.
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: New Person with Pudendal Nerve Disorder

Post by helenlegs 11 »

Love your post Jim, long may it continue.
Take care,
Helen
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.
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: New Person with Pudendal Nerve Disorder

Post by janetm2 »

Jim,
Great to hear your success and thanks for posting to the group. There can never be too much of good news here!
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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Violet M
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Location: United States
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Re: New Person with Pudendal Nerve Disorder

Post by Violet M »

Thanks for the positive post, Jim. You have probably stated this elsewhere but could you remind us here how you managed to improve? What do you think helped you the most?

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.
konedog4
Posts: 192
Joined: Thu Sep 01, 2011 3:42 am

Re: New Person with Pudendal Nerve Disorder

Post by konedog4 »

I got better through avoidance of anything that would make the condition worse. I gave up sitting (as much as possible) and strenuous exercise. I started physical therapy and learned how to massage out trigger points internally and externally. I began walking and swimming. And just as importantly, many people prayed for my recovery.

I am not 100%. I still get sore when I sit too long, and I cannot overdue it on exercise. But I am moving in the right direction. Next, I plan to visit Canada for a shockwave treatment.

Jim
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Violet M
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Re: New Person with Pudendal Nerve Disorder

Post by Violet M »

Thanks Jim. You are very blessed and I hope your shockwave treatment goes well. ;)

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.
deBBieW
Posts: 162
Joined: Tue Oct 25, 2011 2:59 am
Location: Milwaukee, Wis

Re: New Person with Pudendal Nerve Disorder

Post by deBBieW »

Jim,
I'm very happy for you improvement. You are an inspiration to the rest of us. I think it's important to post when you feel good too, and why you are feeling better.
Be sure to let us know how Dr. Andrew's treatment goes for you.
I'm back from Hibner for a consult, and will be posting soon.

Best of luck,
Debbie
Vag pain, leg burning 3/11, SIJ inj 7/11, Pelvic PT, Chiro/acupuncture,
2-CT pudendal blks 11/2012, did help, less deep vag pain
Potter MRI 04/2012 - Scar tissue/thickening at SS/ST, scar in Alcock canal -bilateral,
Hibner 6/12 suggests Botox (didnt do), 8/12 more pelvic PT w/ dry needling
Gabapentin 1800 mg, Lyrica 200 mg, 5mg valium, vicodin as needed
Trying to get rid of central sensitization burning pain in my legs, Valium seems to be helping
Looking into more mindfulness options. . . . .
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: New Person with Pudendal Nerve Disorder

Post by helenlegs 11 »

Good luck with the ESWT Jim, as Debbie said let us know what happens. . . more good news I hope.
Good news that you are getting somewhere too Debbie. Hopefully Dr Hibner will be able to help you :)
take care,
Helen
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.
konedog4
Posts: 192
Joined: Thu Sep 01, 2011 3:42 am

Re: New Person with Pudendal Nerve Disorder

Post by konedog4 »

Well, how quickly things can change! A week ago I posted a very positive note about my recovery. Today, after experiencing a setback, I am back to more symptoms and less comfort. Quite simply, I tried to do too much too soon. I began lifting barbells again, and I think this is what started my symptoms up again. So, it is back to the proverbial "drawing board" and taking it easy again.

I have made an appointment with Dr. Kirk Andrews in Cornwall, Canada for a week of Shockwave Therapy. Late August-early September. I hopefully can report back an improvement then.

kone
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Violet M
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Re: New Person with Pudendal Nerve Disorder

Post by Violet M »

Ouch, Kone. :evil: You've got to stay away from those weights, man. ;) But don't feel too guilty -- you are not the first PN patient to do too much too soon. I think we've all been in your shoes. Please take it easy.

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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