PNE Awarenes...How You Can Help

Petition For More Research, Awareness, Training For Med School Students & Doctors For Chronic Pelvic Pain Frequently Caused By Pudendal Neuralgia/PNE

       I have personally been affected with a debilitating and chronic pelvic pain condition called pudendal nerve entrapment, or PNE for two years. I can't even imagine feeling like this for another year, or possibly longer. So many of the PN sufferers that I have recently found through a support group have been dealing with this issue for 5, 10,  and yes, even 15 plus years. They really are true survivors, but have endured long years with chronic pelvic pain and bouncing from doctor to doctor. I have met people who have lived with this pain for several years before finally getting the correct diagnosis. Many were misdiagnosed with other pelvic conditions, and some were even told that it was all in their head. I am worried that there may be hundreds of people out there in this situation that do not know the reason as to what it is that is causing all of their pain. Too many doctors are unaware of this rare nerve condition, and because of the lack of knowledge in the medical community, too many people are isolated and suffering alone, with no where to turn for help.

      My pain is a direct result from a pelvic surgery. A routine hysterectomy, and cystocele, rectocele repair. The doctor that did my surgery was a OB/GYN, and he knew by six weeks post-op that I was having nerve issues, because my biggest complaint was of a constant burning feeling. However, my biggest concern was the inability to sit, not even for a minute. He found this very odd, but assumed that I would continue to get better. Had my doctor known about the pudendal nerve, he would have picked up on my concerns and issues that day. The instant I said "I can't sit, it is too painful", should have been his very first clue, the inability to sit without pain is the biggest indication of PNE. Instead it took another three month's before I got the diagnosis. Typically at six weeks post-op most people would be fully recovered from a surgery like this, and back to living a normal daily routine. Unfortunately, I found myself at six weeks post-op seriously struggling to get through my days. Because of my condition my doctor wanted me to come back in a month for a follow-up. So, at 10 weeks post-op, with very little improvements, he recommended for me to see a neurologist. Well, after a few phone calls to several neurologists practicing in the Salt Lake Valley, I learned that neurologists have very little knowledge and no medical training of the nerves in the pelvic area. Not one neurologist office would even schedule an appointment for me. I was completely devastated, and felt like I was getting passed along from one doctor to another, because no one knew what to do for me. What happens next is the part where I got really lucky, I just happened to stumble into the right doctors office. Why do I say that is lucky, you ask? Because the majority of PN sufferers that I have recently met, went years before finally getting diagnosed. I decided to schedule an appointment with a different OB/GYN for a second opinion. After 4 long month's of excruciating pain, I was finally given a diagnosis of a condition called PNE. She had been in practice for only four years, and during one of her residency rotations she worked with a doctor who practiced in a pelvic pain clinic. She she was able to connect my symptoms with a condition that she had never personally seen, but had read about one time.

      Unfortunately, even with a diagnosis, I found that there was very little treatments being offered to help. As most of you know, I had to travel out of state to seek advice and treatments from the few doctors who specialized in PNE. And, there is only a handful of doctors in the United States qualified to do the surgery. I traveled all the way to Istanbul, Turkey for the surgery, because of the advancements and cost. I never in a hundred years could  have ever imagined needing to go to such great lengths for help in finding relief from this chronic pain condition.

     There is a lack of knowledge in the medical community for this condition of PNE, and the treatments being offered. This rare, but chronic pelvic pain condition is often overlooked at universities and hospitals,  med students aren't even being informed of this terrible nerve condition. Me, and all the other people who suffer with PNE, have found ourselves in a situation where it is difficult to find a doctor to give us a proper diagnosis and the treatments needed.

      I am asking for your help to spread awareness regarding PNE, my support group is trying to bring awareness with a petition. Once enough signatures are received we can pass it along to all of the different organizations such as, American Society for Peripheral Nerve, American Urological Association, The American Gynecological Association, International Pelvic Pain society, American Medical Association, and several Medical Schools. 

     The goal is to get 1000 signatures, right now there is just over 550. I always get remarks from people asking what can I do, and saying how much they wish they could help. Well this is your opportunity. It would be a huge step in bringing awareness to our doctors and future doctors by just signing this for me. It literally only takes a few seconds. Just click on the link, scroll all the way down to the bottom, and it is only two questions, your name, and an email. That's all that is required. There is a place to leave a comment, but it is completely optional, and you can even put anonymous if you don't want your name to appear. Trust me, this is very real, and unfortunately, it's just in the beginning stages of awareness. I wish for no one to have to go through what I and the people in my support group have been dealing with for so long. 

      For anyone who finds my story hard to believe, and are shocked that something as simple as sitting could be so painful. And, the fact that I traveled to the other side of the world for a surgery that's not even offered in the U.S., please take a quick minute in helping us reach our goal. Pass it along and please share with your spouses, siblings, parents, friends, neighbors, and anyone who has an email that can sign. It is important to us that we are heard, and that future doctors, and the doctors currently in practice can be informed and made aware of the symptoms and the name of this condition. We need to start turning things around for future sufferers. It is time to open the eyes to the medical community of this terrible nerve condition.

http://www.ipetitions.com/petition/request-for-more-research-on-and-training-for-all/


Petition For More Research, Awareness, Training For Med School Students & Doctors For Chronic Pelvic Pain Frequently Caused By Pudendal Neuralgia/PNE