Dr. Oz ~ PNE/PN Awareness Support

[curliegirlie74]

http://www.facebook.com/groups/10383831 ... p_activity

Shawn Ellis wrote:

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.

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

Shawn Ellis
shawnmellis@gmail.com
919-414-0871