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. ;)
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 Julia » Thu Jun 14, 2012 4:57 am

That's wonderful, so nice that you're sharing what you've learned and raising money and awareness too. I don't have a kindle, will it be available in print format too?
Julia (Toronto) 31, female
Chronic pain since '09. Current symptoms: burning pain at left ischium when sitting, pelvic floor heaviness/tightness, cannot sleep on left side, pressure on bladder, pain worse with sitting/lifting anything heavy/pulling open doors, unable to wear tight pants, pain is intermittent; sometimes a dull ache, other times burning/pulling/pinching. Amitriptyline and ice helps. Diagnosed with labral hip tear 2014, considering surgery.
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby Leilaa » Sun Oct 07, 2012 4:53 pm

Amy Stein... thats the first thing i found and looked into ...just few days ago... and I thought it helped abit... and Im doing "letting go" lmao... I just cant beleive I have this problem ... massaging my ass with coconut oil .. I dnt know y we have to experience this... I think I found more sore spots while massaging_ great:(
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby Leilaa » Sun Oct 07, 2012 4:57 pm

Also .. I purchased online yoga classes from a yoga instructor helping hypertonic pelvic floor muscles... I hope it will help... its supposed to help some.
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby Violet M » Wed Oct 10, 2012 4:04 am

Leila, I would be interested to hear how yoga goes for you. Stretching didn't work out too well for me but hopefully won't be a problem for you.

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 Leilaa » Wed Oct 10, 2012 8:40 am

Hey!
I will let u know for sure . Im waiting on delivery.

Why didnt yoga help? it should stretch the pudendal slowly and safely ... So maybe we shouldnt stretch the area .. pfrfr this is soo confusing..

I"ve seen PT today. She thinks my pelvic is locked or has a tilt due to body flexibility . She Rubbed my tailbone for a while... Massaged my buttock points and some spot towards my hip.

I asked if I will recover from all the symptoms. She said, yes but cant say when. But she also said shes worried about me weeing frequently... Well I told her I searched up on this and I dont think I will b recovering. She kind of laughed it off like im internet crazy . She said I will recover and start working out as usual... this sounds so weird to what Ive been reading here:) Should I have high hopes for my full recovery? After reading everything here I really doubt the full recovery. Im in constant beleif that I will remain like this with little or no improvement.. but I shall wait and see..
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby calluna » Wed Oct 10, 2012 10:54 am

Leilaa, with respect, and I know this is difficult particularly at the begining - I think that's perhaps not the best attitude, to have the belief that you will not recover. We do need to be realistic, but if possible it is perhaps better to aim for cautious optimism, together with acceptance. I do hope that you'll find yourself able to move towards this.

To paraphrase Henry Ford - whether you think you will or you think you won't, you are probably right.
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby Leilaa » Wed Oct 10, 2012 12:45 pm

hey Calluna
I am accepting that I "wont recover "... Isnt this the first step... acceptance to move on... optimistic or not thats the first mesg I had from all the stories in the forum (sadly). Nobody really recovered or said much positive things.. Its a life changing sickness. If it limits you , it limits you ... thats a fact ..Whats wrong with accepting that. I rather have it the way it is.

In the forum search tool I search for positive recoveries yet ..zilch... sooo if u have the symptoms u must have P N E... And the more I research the worse it sounds with more problems... Did anyone really suffer with temporary PNE symptoms and recover ...? ... according to here Nope.. I want to hear alittle from those who have... if there was none then say it the way it is. Thats the way many will understand and accept this sickness.

I had these symptoms a week ago and already feel like I had them forever and will be stuck with it... for a lifetime. Thats the vibe I felt after reading here and everything else.. Honestly it depressing... Nothing fun.. just more limits and when trying to find out how when and why it feels really annoying to have people say things that dont answer your question.. like be optimistic... Now I wasnt trying not to b optimistic... Its a fact.. I dont want sympathy .. Truth will do
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