I Published A Book to Bring Help Awareness to PNE on Amazon

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I Published A Book to Bring Help Awareness to PNE on Amazon

Postby shawnmellis » Fri Jun 01, 2012 2:45 am

I just Published A Short Book to Bring Help & Awareness to PNE/Pudendal Neuralgia on Amazon Kindle. The book I wrote is about PNE treatments used, causes, my story about my struggle with PNE and more, is now on Amazon Kindle, which you can download. I hope to have it on Barnes and Noble Nook, Apple I Book, and more soon but it is on Amazon for now. I know it is not perfect and may have some typos in it because it was not professionally edited. I feel like if I did not have so much going on physically, financially, and emotionally, I could have done a better job, but I did the best I could. If I waited to finish writing the book to get it perfectly right, it could have taken me another year to finish and possibly interviewing many experts on PNE personally. I feel like we (everyone with PNE) simply don't have 1 year or more to wait for this to possibly occur. I was frustrated by not seeing any books published on PNE anywhere, so I took it upon myself to write this to possibly help some and also bring awareness to PNE and to possibly help make the medical community more familiar with PNE as a diagnosis for Pelvic Pain once other conditions have been ruled out such as Prostatitis, IC, Prostate Cancer, Endometriosis and more. Too many people I feel have been improperly and incorrectly diagnosed with these other conditions. Too many people have been told they have an Idiopathic Condition (Unknown cause) or misdiagnosed with something else. I have however, talked with or met with some PNE specialists regarding PNE and treatment, such as Dr. Dellon, Dr. Aszmann, Dr. Bautrant, and IPPS members, but not 100 percent of them or as many as I would have like to. I simply have tried to provide as much information as I have learned about PNE in 2 1/2 years as possible. I have not had the chance to talk with many leading PNE physical therapists, but I have talked with many patients who have seen them. I have been to physical therapy and also read Amy Stein and other's books before and practiced her techniques with no permanent relief personally from either one.

By the way, all the proceeds from the book does go to Pudendalhope.org and to other non profit groups to help fight PNE and not to myself. The name of the e-book which you can download easily to your computer and is only 99 cents is called Chronic Pelvic Pain from Pudendal Neuralgia and Pudendal Nerve Entrapment and is at http://www.amazon.com/Chronic-Pudendal- ... 444&sr=8-2 I plan to add more to it in the future, including possibly more info. on a treatment called ESWT. Everyone's cause and treatment may differ for PNE, but there are many similar things that can be done to help bring physical and emotional relief including changing your lifestyle, sleeping positions, medications, and more. Always consult your doctor and any advice or opinions in my book do not substitute for a professional doctor's opinion, just the opinion of someone with PNE for 2 1/2 years. There's Always Hope!

Shawn
Bringing Help Awareness Education to Patients & Doctors about PNE through Videos at http://www.YouTube.com/PudendalNerve & PudendalHope.com Please tell Dr. Oz to cover topic of PNE by going to http://www.doctoroz.com/contact Started 1/2010. Initial urinary tract infection in 1/2010. Medication: Diazepam, Tramadol. 4 nerve blocks. physical reinjury 8/2010. 7/2011 Potter MRI Varices dorsal branch 8/23/11 Diagnosis Entrapment of Dorsal Branch Dr. Lee Dellon There's Always Hope!
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby helenlegs 11 » Fri Jun 01, 2012 9:49 am

I've just downloaded it Shawn :) Got to finish 'The Hunger Games' first tho'. Well done for all of that effort.
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.
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby Violet M » Thu Jun 07, 2012 11:11 pm

Good for you Shawn. I'll have a look at it soon. ;) I made this topic into an announcement.

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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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby kathyd » Fri Jun 22, 2012 6:54 pm

Hi Sean,
That is wonderful of you. You are to be admired.
Thanks for doing this.
Kathy
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby sadie » Fri Nov 23, 2012 7:15 am

dear Seanmellis I went to buy your book but i wanted it in paper form as....... I cant affort tablets and smart phones on disability ..just an old school computer .....So I will look for it in book form if you ever get it published that way ...........but congrats and success with the book . God bless Sadie
2007-2010 anitriptyline for PN, 2010 it caused severe dystonia
2010 PNB w steroids caused severe PGAD
11-2010 St Josephs NH. , ketamine drip, meds etc to stop nerve from firing, nothing worked
11-2010 - 3-2011 Elliott Hosp. Pain Manag. Center , 16 PNB w/ lidocane did not work
3-2011 bilateral TG surg., w/ Dr. Conway
12-2011 3TMRI, Dr. Potter, rt side nerve re-entrapped w/ scar tissue
3-2013 rt side re-do surgery w/ Dr. Hibner for PGAD
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby sunshine hope » Thu Feb 06, 2014 12:28 pm

Hi I have only just joined this morning .
Yesterday after 19 months of doctors and being sent in all different directions.
I had my first trail injections and this in itself as given me hope , I have talked to many people , even my family .
Its was such a hard continual pain to describe and began to think it may be in my mind.
I was totally amazed yesterday in our waiting for treatment room how many have this secret, because this is what it appered to be , it was amazing and so helpful to listen to others both men and women speak about how they felt .
Its sounds odd but I enjoyed my visit ,, my username is for a reason , that I have lived with hope daily and just wanted the sun to shine for me again .
I am now going to look on Amazon , goodness knows the creams , and eating well , and everything I could think about I have tried , and I just know now I am not alone .
Sadly this pain is not spoken about much , maybe as me we dont talk ,, but talk we need .
I believe we are strong people.
Yesterday I heard a man speak about a 12 hours flight in pain of this kind ,yes it just that sitting down isnt it.
I try so hard ,,, I may sit there at a pary ,, at a film ,,, at a meal out ,, and there it is my constant hell ,, and I smile and try to listen to my family and hide my true feeling ,, (Oh to be able to just stand up ) of course by now they think I have a weak bladder as we know the loo of my peace ,,, and go to bed early is just a dream ,, yes it may slightly be there in the back ground but I do sleep well.
I believe it tires out our central nervous system , and take energy , we are fighting ever day ,, and some part of the night .
I have been advised about this site and hope it will help me but I hope more so my thoughts will helps others, goodness knows we all need it ..
One good thing yesterday my consultant (and god bless him) although i do have spinal injections and without sedation ,, he told me I insist you have sedation ,, oh well I was like someone on a another planet ,, as women will know not the best of positions to have to lie in ,,, but yes agree what does it matter if we are on our way to recovery .
Yes I have been told this is now for the rest of my life ,, but I do ,,, have accepted this and look forward to being in some slight less pain would be enough , I live in great hope of yesterday.
I am so lucky to have found this very kind and gentle consultants ,,took a long time to find him ,, but now it doesnt seem as bad .
My very best wishes to everyone ,, I hope I have gone on too much ,, but I have a lot of excitement within me now ,, and hope this helps to do what also is intended to give hope and peace of mind to others ,, one thing for sure we are not alone ,,
God Bless ,,,, XXXXX
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby sunshine hope » Thu Feb 06, 2014 12:29 pm

Hi Ps , Just to add , I have not spoken to any member of my family is what I did intend to say ,, XXX
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby janetm2 » Fri Feb 07, 2014 12:32 am

Welcome Sunshine Hope,
What lovely note. I am sure it will inspire others and it is always good to hear someone has found more information and help with this condition. I am glad you found us and I hope we can help you. The FAQs on the homepage have a wealth of information and we have many topics covering every aspect. Best of luck.
Janet
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr 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 started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby Violet M » Sat Feb 08, 2014 7:59 pm

Hi Sunshine,

It sounds like the name you have chosen matches your positive personality. I'm glad to hear you have finally found a consultant who understands your situation and I hope he will be able to help you. It is much easier once you figure out a diagnosis and know that there are other people who are getting better who have gone through the same thing. I agree that you may have to be careful the rest of your life but I think it will be possible to enjoy life again if you obtain the right treatments.

Best,

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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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby ColSkiier36 » Sat May 24, 2014 5:07 pm

That is so awesome!!! Thank you so much for doing this, I will get this book!
Pelvic Pain started 2008 Endometrosis diagnosed May 2012 Partial Hysterectomy w/ left ovary removal Nov 2012
Urinary issues and pelvic floor issues Sept 2013 InterStim Trial May 2014 (worked but opted for no surgery)
Diagnosed Pudendal Nerve Damage May 2014 Diagnosed Urinary Retention May 2014
Currently exploring options to heal!
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