Current Forum Moderators

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Current Forum Moderators

Postby mod3 » Tue Sep 04, 2012 12:51 am

Amanda
(Former)Competitive Swimmer
Veteran PNE Patient

Calluna
Bachelor of Science, Physics

Helen
Bachelor of Fine Arts
Veteran PNE Patient

Karyn
(Former) Administrative Assistant
Veteran PNE Patient

Violet M
Registered Nurse
Bachelor of Science, Nursing
Veteran PNE Patient
mod3
 
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Re: Current Forum Moderators

Postby nyt » Tue Sep 04, 2012 1:46 pm

Thanks for all the hard work you guys do!
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
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Re: Current Forum Moderators

Postby Bill W » Tue Jan 08, 2013 12:36 am

I appreciate every single one of you. This is a tough, complicated condition and you do a magnificent job of keeping it sane and organized. Thank you so much!!!
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Re: Current Forum Moderators

Postby lightmail » Tue Jan 08, 2013 8:21 am

You guys are always here for us and the new ones....Thank you very much...Robert
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Re: Current Forum Moderators

Postby JMIL » Fri Mar 29, 2013 4:36 am

Although I am newly registered to your site, I have been following it for years. I spoke to Karyn today, so I'm sure you'll hear about this from her, but I felt compelled to personally write to each of you , letting you know what a fantastic job you do monitoring the site. I am impressed with the professionalism that shines through on each post. You have created a site that I call a safe haven. I love how stories are shared and you welcome us with open arms ready to shower us with encouragement. Our stories may differ slightly, but our commonality is pain. We can share our stories and get positive feedback. Yet even if one therapy works for one and not another there is support to keep searching, encouraging us to never lose hope , and support is but a click away.

I am very selective about sites I visit due to negativity, but now yours is the only site I visit. Please keep up the fantastic work you are doing. There is enough negativity in the world as it is, so it's nice to know we have a safe haven.

I also want to add that I know we all have our bad days and need to vent. I don't consider that negativity, I see it as a place we can come in our darkest hours for help and encouragement. All too often those behind the scenes do not receive their fair share of credit. I just wanted you to know from the bottom of my heart your work is appreciated.

I may have already traveled a long road to get to where I currently am, which is still in debilitating pain, but I have hope and where there is hope there is light. Pudendal Hope provides us with the positive reinforcement we need to continue our journey. My thanks goes out to each of you for monitoring this site and keeping it safe for those of us in need of a safe haven.

I hope you'll forgive me one day when I'm not feeling so positive and come crying online looking for guidance.

You are all amazing....keep up the awesome job you're doing.

Sincerely,

Jen
Vulvar burning '06; Dr Goldstein 2 vestibulectomys '09 & '10; 6/09 hysterectomy resulted in 3 add'l surgeries for hemorrahaging; Dr. Marvel diagnose PN recommend surgery; Dr Echenberg '11 diagnose PNE & IC treatments unsuccessful for PNE; Dr Conway TG PN Decompression Surgery in 7/12 still intense vulvar burning & tailbone/SI Joint pain; Dr Santo 3/13 MRI arthritis in SI Joints, SC Joint injection SI Joint Injection 4/13; Dr Gordin Hershey Medical Center 4/13 intrathecal pain pump?
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Re: Current Forum Moderators

Postby mod3 » Fri Mar 29, 2013 4:49 am

Thank you, Jen .... and welcome to the forum. I hope you have found (and will continue to find) some information that helps you through your PN journey. If you need to vent we will not think of it as negativity. We've all been there and we understand.

Hugs,

Violet
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Re: Current Forum Moderators

Postby donstore » Fri Mar 29, 2013 9:08 am

Thanks to all of you that keep HOPE alive.
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
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Re: Current Forum Moderators

Postby Karyn » Fri Mar 29, 2013 1:49 pm

HI Jen,
It was wonderful speaking with you over the phone and I want to thank you for your kind message. I'm glad you found us, and consider HOPE a safe haven. We strive very hard to achieve this, as well as provide the most up to date resource materials. Please let us know if there's anything we can do to help.
Warmest of 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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Re: Current Forum Moderators

Postby helenlegs 11 » Fri Mar 29, 2013 9:25 pm

That is So nice Jen :) . I have got to say that I am similar and don't much 'do' negativity, so stick primarily with HOPE and have learned such a lot. In fact I wouldn't have known what to do about this problem without the internet in general in the beginning and HOPE for constructive knowledge help, information and support. Even just writing things down helps cathartically (did you find that?) and often helps clarify things, in a what to try, how to explain and what to do next way. It's really good when you read something from someone else and think, Thanks, :) it's not just me then!
This amount of 'painful' input could have a whole different outcome and slant (and often does some different places) so it is very refreshing to have people like the former and original mods that have structured this site so well and the rest that have kept that things together so wonderfully.

About 6 months ago I was diagnosed as having central sensitisation CS (for a claim, the full story I still have to tell) A previous (5 years), S1/L5 disc herniation and following (successful) microdiscectomy, were sited as the original problem from which I had never recovered ??? and subsequent reason for this CS, even though I had worked full time, taken no medication, had no days off work and had a very active social life in those 5 years. The report also gave a prognosis that I would not be able to improve my 'pain in the brain', CS situation unless I give up my idea that I have pelvic nerve entrapment, which was being heavily fueled by my participation in internet 'pain' forums and essentially I should 'step away from the computer' and stop 'malingering' so to speak (Apologies to those with CS, I know it is much more complex than that)
I had no chance to redress this report findings to say that I am very proud to be part of such an active and caring community that has achieved such a lot and helped so many people. This has been achieved in an arena where the our problems are misunderstood, little known, ignored or actively denied.
I have always thought that the denial was the worst problem, I have encountered it SO much but actually, misunderstanding and ignorance with following inappropriate procedures based on that ignorance and misunderstanding is far worse. We can always educate the deniers after all, they have simply ignored us.
Don't think you are alone with this Jen, there was a recent Body in Mind blog (love that site even tho it is mainly all about the CS scenario) about this very thing.
http://www.bodyinmind.org/persistent-pe ... -research/
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.
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Re: Current Forum Moderators

Postby river133 » Sat Mar 30, 2013 6:29 pm

To all of you very special moderators. You have been here with me since the beginning, all of the silly treatments I was trying out of desperation. Acupuncture, prolo therapy, etc.which set me back thousands of dollar. Not once did any of you judge me, just kept encouraging.Maybe one day
the surgeries will be proven successful , and then again maybe
not.,I still have a lot of hope deep inside of me. We have to or we would go bazerk. :D
You are all very amazing! people, your knowledge of this disease is astounding. I dearly love each and every one of you,thank you from the bottom of my heart ,
.One day may we all be well. Ellie. :D :D
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
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