Everyone Please Submit PNE Topic For Dr Oz Show @ This Link

[shawnmellis]

Hi Everyone. We need to create more awareness about Pudendal Neuralgia and Pudendal Nerve Entrapment to not only bring awareness to the medical communtiy and the general population about this, but also to help people get diagnosed and treated sooner and for advances in surgery to be made sooner. There is a website address for the Dr. Oz Show where you can submit topics you would like Dr. Oz to discuss on his show, which is shown to millions each day. I have submitted a letter with the subject being "I Have A Topic I Would LIke To See Covered On The Show" Here is the letter I submitted, but you can all submit your own letter to them talking about Pudendal Nerve Entrapment to them and telling them what you would like. This is just a sample letter to maybe go by. If everyone on this forum submitted a letter like this to him, there is a good chance he will talk about it on his show. Here is the website link address to submit your topic http://www.doctoroz.com/contact

Here is my sample letter which I sent to him, but you can all send him whatever letter you like, just make sure you mention Pudendal Nerve Entrapment and Pudendal Neuralgia and awareness for it. Thanks

Shawn

Hi, I watch and recommend your show every day. I would like to see the following topic on the Dr. Oz show talked about which affects thousands of both men and women and possibly more because it goes undiagnosed or misdiagnosed for years, and which many people in the medical profession are either unaware of it, or do not know how to properly diagnose it and treat it because they were not taught about it in medical school and are still unaware of it.

There are different names for this medical condition, depending on which doctor you talk to or if you are a male or female. If you are male, it is sometimes called Chronic Non Bacterial Prostatitis, which is what most cases of Prostatitis diagnoses are in men. It can also sometimes be mistakenly called IC, or Pelvic Floor Dysfunction, Chronic Pelvic Pain Syndrome, or a lot of different things for both men and women. IC, Pelvic Floor Dysfunction are symptoms of Pudendal Nerve Entrapment and Pudendal Neuralgia, especially if a Cystoscopy and other tests have been done to rule out IC. Pudendal Neuralgia causes a lot of symptoms that are common in people who just have IC, such as urinary frequency and urgency.

This topic or medical condition, I am referring to is called Pudendal Neuralgia or Pudendal Nerve Entrapment. It is kind of like carpel tunnel syndrome, except for instead of pain in your hand and wrist being affected from the compression of this nerve, your Pudendal Nerve (largest nerve in your pelvis) is compressed, which affects so many areas down there like basic function such as sitting down in a chair without pain, sex, erectile dysfunction, genital burning, urination, pain in perineum, bowel movements, pain in other locations, and normal activities you can do. It affect many people throughout the world and depending on the level you have it can make your life really debilitating. Some people have to quit working and go on disability and it affects people of all ages. I am 37 and I have had this condition for over 1 1/2 years, and I know a lot of people, including doctors who have this condition and some who have had surgery for it and got better. I got it from an actual physical injury of my pelvic area, which was not even anything severe like a car accident. There are many people who got it from weight lifting, bicycling, hysterectomies, giving birth, falling down, and for me it was just standing up from a squatting position against the current of the ocean.

There are treatments for this to help people, but the problem is that it takes a very long time for most people to get diagnosed with it because most doctors including urologists, neurologists, neurosurgeons, and primary care doctors are not familiar with how to diagnose or treat it properly. I was luck to get my diagnosis after seeing about 15 doctors, and numerous tests, within 1 year. Most people find out they have it after seeing many more doctors and tests and money spent on health care, and some men like me find out from a sports medicine doctor who sees this condition in men a lot from excessive bicycle riding. The most popular website for this condition is called http://www.pudendalhope.com I know a lot of the moderators of this website who help also run the forum very well who can also discuss this condition with you. Many experts on PN and PNE frequently visit this site for information and to hear from actual patients with this condition on the forum. There has also been a recent publication by Dr. Lee Dellon from Baltimore, a prominent nerve surgeon who used to work at Johns Hopkins Hospital, who I recently saw, in which he discusses the role of the pudendal nerve and all of the branches of the pudendal nerve which can cause pain when sitting and urinary problems. This publication is at http://dellon.com/ps/chapter12.pdf

There used to be only a couple of surgeons and experts in the U.S. who helped people with this, and most were in France 10 years ago. Since then, there are more than two, but still not enough, and there is still not enough awareness about this not only in the U.S. but in the world and not only in the medical community but in the general population. One of the surgeons in the U.S. who is well familiar with this Pudendal Nerve Entrapment and surgery for it is Dr. Michael Hibner in Phoenix Arizona. He does a lot of surgeries for PNE. His address and phone number is below:
Phone & Address
Office locations for Dr. Michael Hibner, MD
Primary Location
Saint Joseph's Hospital and Medical Center GYO
500 West Thomas Road Suite 680
Phoenix, AZ 85013
Phone:
(602) 406-6017

I am hoping to try to spread awareness about this in order to help educate people in the general population and also the medical community about this. Dr. Hollis Potter in New York City does MRIs to help about half of the time see scar tissue around the nerve or entrapment of the nerve, but the best test for this is called a Pudendal Nerve Block test, which is best done by CAT Scan guidance and if it takes your sitting pain away, then your pudendal nerve is the cause and you either have Pudendal Nerve Entrapment or Pudendal Nerve Entrapment.

Please let me know what you think about possibly having this topic on your show and if you have any questions you can call me or email me any time, because I work with home. I help people every day on the phone, email, and Internet with this medical condition, but the problem is there are so many people who are still never diagnosed or takes years to diagnose and we need more awareness of this to help bring about better and more widespread treatment and surgery outcomes for this. Thanks

[kathyd]

Good work Shawn! Great letter.
I have suffered from IC and then a few yrs later sitting pain. My areas of pain seem similar to yours. Your MRI description of varices abbuting the PN etc.. sounds also like mine. tho the female verision!
I have seem many docs and continue to be angered and shocked at the ignorance of the medical community to PN, IC etc.. They have tried many things ..unfortunatley many of these treatments ultimately made me worse.
But I am determined to heal and be 100% for my family.
BTW I did have my varices embolized on one side, with no pain relief ( Dr Potter recommended I do this,) I was skeptical but did so since it was worth trying rather than surgery. (the surgeons had said it would not help)
Feel free to PM me if you like...I have trouble finding my posts on these boards sometimes.
I wrote Oprah about IC a couple yrs ago,, but just got the polite.. butnot interested response!
My mom often suggests I contact Dr OZ in hopes that he can help we who suffer from this unheard of pain,
but I figured it would just get read by an intern or staffer who would blow it off Its worth a try tho!!!
I am parent, like you. I have 3 greatkids who need me and I am middle aged.
My hubby is worn out from supporting us all esp me, and I keep praying that we will find pain relief. (meds haven't helpded yet.
Would love to speak more with you. PM me if you like
Kudos again on your great letter. I will join you in wrting as well regards
Kathy

l

K

[shawnmellis]

Hi Kathy, If we keep bugging Dr. Oz, he will eventually cover PNE Also, your story of the embolisation of the veins not helping is what I have heard from a lot of people. Have you seen Dr. Dellon yet? If your symptoms and MRI are similar to mine, you may want to see him like I did.
Shawn

[JeanieC]

I have trouble finding my posts on these boards sometimes.

Kathy, Have you noticed there is a 'Find your own posts" under the board index, left side of screen. This will list your posts and make it much easier