Health Organization for Pudendal Education

If anybody else here agrees that we should try to work together, and talk in a rational manner with other PNE or former PNE patients, and surgeons about everything (including surgery approaches and outcomes) in order to help bring improvements in surgery, and treatment to help people, please let me know by replying to this post because I'm starting to feel discouraged and like I'm the only one. There's Always Hope. God Bless.

Shawn

I think that we should rationally discuss this and be open to having different opinions. I have given mine and others responding to this post have given theirs in a rational, nice way. Celeste, if you feel that cutting the Sacrotuberous ligament does not cause SIJD or Piriformis Syndrome because you do not know of any surgery patients getting these new problems from having the ligament cut then you could just say that and give your opinion on that subject. I can take that. I would be fine with that. Solutions to problems are found by rationally discussing differences of opinion, and hearing all of both sides of a problem, and then brainstorming new ideas. Celeste, since I have gotten PNE, I have come to know a lot about it, and I have helped and continue to help many people each and every day all over the world with PNE, on the phone, on the internet, via email, etc., who are not members of this website, as I am sure you do also, so we are not on the opposite sides of the fence. We are on the same side so we must both, we must all come together and all be united to working towards our common goal. We all here have either had PNE or currently have PNE like me, and some of us help many people every day by supporting them like me as well, so we are all on the same team. I just want to help people win against this terrible, debilitating medical problem, PNE. There's Always Hope!

Shawn

Celeste wrote:Stop telling me or anyone else what quest I am on. You do not speak for me and you never will.

Furthermore if you think surgery needs to be improved, that's great. You won't accomplish it on the forum, though. If you really are a pain patient then you have no shortage now of surgeons to choose from and that includes surgical differences of all stripes. Pursue what you want, but why you insist on tying up the forum with posts about what you are trying to do for patients and forum members isn't really making sense.

Celeste wrote:If there's a surgery that you want, then go to a doctor who does it. Do not go on a holy war trying to get anyone else to do it. Just get what you feel you need and move on with your life.

Why are you being so nasty? If you feel Shawn is "tying up the forum" with posts that are unmeaningful to you, simply skip them and move on with your life. There's no need of this!

shawnmellis wrote:If anybody else here agrees that we should try to work together, and talk in a rational manner with other PNE or former PNE patients, and surgeons about everything (including surgery approaches and outcomes) in order to help bring improvements in surgery, and treatment to help people, please let me know by replying to this post because I'm starting to feel discouraged and like I'm the only one. There's Always Hope. God Bless.

Shawn, most of us DO work together in this community. With only 5 surgeons scattered across the US, and not many more over seas, there are many unknowns about this condition; leaving patients with very little information and the responsibility to perform many hours of self research. HOPE is a place (or supposed to be) to learn from each others experiences, share information and resources, and toss ideas around. Most importantly, it's where we go for support when no one else understands. I do agree with Celeste in that you made a mistake in assuming her contributions to HOPE are the same as yours.
Warm regards,
Karyn

Hi, Shawn. Sorry you got an unkind response to your post. Usually, the members of this forum appreciate differing ideas and opinions. Like Karyn said, if we don't find certain posts useful, we can just skip them. Please don't be discouraged.

Emily B.

Karyn wrote:Why are you being so nasty? If you feel Shawn is "tying up the forum" with posts that are unmeaningful to you, simply skip them and move on with your life. There's no need of this! I do agree with Celeste in that you made a mistake in assuming her contributions to HOPE are the same as yours.

Karyn, please don't call me nasty for simply asking him to stop talking about me like he even knows me or what I believe. He had made SEVERAL posts along those lines and yes, that kind of thing does tie up a forum...it doesn't help anyone for him to carry on like that to me, but if you feel in your wisdom that it was valuable for him to repeatedly say something that was false, I guess I just have to say that's awesome.

Emily B wrote:Sorry you got an unkind response to your post. Usually, the members of this forum appreciate differing ideas and opinions.

Thanks for calling me unkind for publicly asking him to leave me out of his public remarks about him and me being on some quest together, Emily.

Hi Shawn,

You have to realize that Celeste's only objective to hang on the forums is to attract patients to the Houston team and that is all.

Take care,
Ali

Oh, boy. I think I've stepped into a conversation I must have misunderstood. I'm guessing there is a tension between members that I'm not following???

It sounds like there is an undercurrent of hard feelings that I'm not catching on to. I'm sorry that my post seems to have contributed to the tension.

Celeste, I'm very sorry that I upset you. I'm not on a quest. (To be honest, I'm not even sure what was meant by that.) My intention was to encourage a member who said they were feeling discouraged. My intention doesn't matter because I upset you and I'm sorry.

Apologies,

Emily B.

I think that most of us here get along and discuss our differing opinions well in hoping to bring help and positive change to anyone suffering with PNE. I have no bad feelings, ill will, or problems with anybody on this forum because we are all on the same side and in this together. There's Always Hope!
Shawn

AliPasha1 wrote:Hi Shawn,

You have to realize that Celeste's only objective to hang on the forums is to attract patients to the Houston team and that is all.

Take care,
Ali