Health Organization for Pudendal Education

Hello guys,

I was just wondering, i know this website has a lot of people that are really struggling. So sometimes it's easy to get down when you read all these posts because it seems like you will never get better. But are there actually people who get better and at least get over most of the symptoms? I figure its one of those situations where people who get better just never come back and post, and the people that are sick still are constantly trying to find ways to get better so they frequent this website and post things.
In total it really does not seem like there are too many of us that never get better at all, thats just my impression. I feel like there are a lot of people that are helped with even just conservative therapies, but clicking through these forums it's hard to really get that impression, as these seem to be the worst case scenarios, especially with surgeries and stuff.

I am going to get EMG's and nerve blocks soon, something i never thought i would do. But i figure what the hell. They must do more good than bad, and the horror stories i hear on here must be the low percentage of things and not the majority.

Just throwing some thoughts out there. Wondering if the prognosis of this stupid condition is skewed and not as bad as it seems to be.

Thanks everyone, and i hope you all find good health.

Joe,
Maybe take a read through the success stories section. You are right some folks really do get netter through conservative therapies and those all better tend to wander off. Although I struggle with how to define my recovery success and not 100% back to normal I do feel the PNE surgery kept me from ending up 24/7 at pain level 10 (it seemed I was rapidly heading that way and would have lost my job, etc). I am still working albeit only 6-7.5 hours a day and some days less or off due to either PN or foot pain. I use Family Medical Leave Act leave without pay to cover most of the time off. This I believe will keep me the next 2 years as employed and I can retire and get my pension. This alone is hope for me and I then can take it easy and the limits of the remaining PN will not be as much of an impact - I will not have to sit all the working hours. I had no bad effects from the nerve blocks and wish the same for you.
Janet

I have also not posted a success story but have gotten much better. I doubt I will ever be 100% but I still want to make sure I reach my maximal possible level of function and stay there before I post a "success story". I do post less frequently and log on much less often since beginning to recover. I feel like I lost a lot of life and am trying to catch up with it (working, volunteering, going to school) so of course less internet time. I would think that is another reason people who get well don't tend to frequent patient forums.

Dear Joeparz,

I have just posted a succesful ending...the story is under Georgina. Recovery is absolutely possible. It's just that when you get better you just wish to throw everything behind and come back to these forums where thousand of sufferers write it's difficult. I thoght it was my duty to share my good news to support others.
Georgina

Joe, I know of a lot of people who have gotten better and moved on with their lives. You are young and I think you have a good chance for major improvement but the treatment period can take a bit of time until you find what works for you. That is the hard part while you are wading through all of the options and waiting for doctor appointments.

Best,

Violet

I live in Mass and am wading through this process. May I ask where you are getting an EMG and blocks? I have been told that only Dr Conway has the ability to do nerve conduction studies.
Patty

Hello Patty,

Yes, Conway is the only local doctor i am aware of that does EMG's and treats this condition. He says he refers his injections to Beth Israel though. Good for me as i live in Boston.

Thank you everyone else for the positive answers. I am desperately trying to hang on. I am going to do the MRN, i don't care about the money, at this point, piece of mind and potential diagnosis/treatment is invaluable to me. I have not really been living these past 3 years, more just coping and hanging on day to day.

I am hoping with the EMG, Pelvic MRI, Spine MRI, MRN, and maybe a nerve block, i will get some diagnosis and maybe relief.