Facebook Instant Chat Suport Group for Pudendal NeuralgiaPNE

[shawnmellis]

Hi I am a regular member of this website and forum, but I am also a regular member another Facebook support group for both men and women with Pudendal Neuralgia and Pudendal Nerve Entrapment. If you would like additional support and the ability to chat online instantly, you may also want to check out the following group. The link to the closed Facebook Group is called Pudendal Neuralgia Support at http://www.facebook.com/groups/28167824 ... p_activity It has patients with PN and PNE on them. This is a group that is closed and people who are not members for this group, can not see any of the posts on it. If you can't find the group, you can add me as a friend on Facebook and message me you want to join. My Facebook page is http://www.facebook.com/shawnmellis I am no longer ashamed or afraid for anybody to know that I have PNE and I want to spread awareness to the entire world and to people suffering with this and doctors about this, so yes, I voluntarily post my picture of myself on Pudendalhope.com and I voluntarily gave everyone here my facebook username. I am not ashamed but I am instead determined for the entire world to know about PNE and to bring awareness to it instead and for us to have a face with our medical condition instead of just a name. I noticed that only Celeste and I have pictures of ourselves on here, which is fine, but I am not ashamed or afraid of people knowing I have this but instead I could care less and instead just want to help bring awareness and help FIGHT PNE!!!!!!! A lot of the people on these groups are also on pudendalhope.com, but just wanted to share this with you all. Not everybody may like to join this group on Facebook, but it is a closed group, meaning, that not everyone can view it and they must request permission to join the group and they can be taken off the group at the administrators discretion. Again, this is not something everybody has to do, but if somebody is okay with the chance of other's possibly discovering their identity from Facebook as I am, then they can choose to. It is really a personal decision, but everybody should be aware that this is a closed group and you must request permission to join the group. You could also choose to make up a fake name on Facebook and then join the group if you somebody is concerned about someone discovering their identity. Everybody should understand the risks when you post any personal information anywhere on the internet and use their discretion.

Shawn

[ezer]

Shawn,
While I recognize the importance of Facebook, I think many of us enjoy the fact that we can remain anonymous on this forum and can share our confidential medical history without making it public to extended family, distant friends, high school buddies, co-workers, or present and future employers.

[shawnmellis]

Hi
I agree that not everybody would like to join this group on Facebook, but it is a closed group, meaning, that not everyone can view it and they must request permission to join the group and they can be taken off the group at the administrators discretion. Again, this is not something everybody has to do, but if somebody is okay with the chance of other's possibly discovering their identity from Facebook as I am, then they can choose to. It is really a personal decision, but everybody should be aware that this is a closed group and you must request permission to join the group. You could also choose to make up a fake name on Facebook and then join the group if you somebody is concerned about someone discovering their identity. Everybody should understand the risks when you post any personal information anywhere on the internet and use their discretion.

Shawn

[shawnmellis]

Ezer, I also edited my original post to let everybody know the potential that their personal information could be discovered on Facebook and that it is a closed group, and they could choose to make up a fake name for the group. If there is anything else you think I should add or correct on the post let me know. I am referring people from groups similar to these all over the internet to www.pudendalhope.com all the time as well. I think we all need to come together somehow, to create awareness, and to help others, but yes they should understand the risks involved from both here and Facebook regarding their personal info. being discovered.

Shawn

[ezer]

Shawn,
Yes, you can make a fake identity on Facebook but you will not have friends under that identity. Usually you will not be able to join a group if you don't have "friends" as it looks suspicious.

[shawnmellis]

I am a member of lots of Pudendal Neuralgia and PNE groups, but mainly pudendalhope.com and a Facebook Support Group. I help people a lot in both of these support groups. If any new people on here, would also like to join an instant chat support group on Facebook, please join the closed Pudendal Neuralgia Support group at http://www.facebook.com/groups/103838315764/ This is a group that is closed and people who are not members for this group, can not see any of the posts on it. If you can't find the group, you can add me as a friend on Facebook and message me you want to join. My Facebook page is http://www.facebook.com/shawnmellis I am no longer ashamed or afraid for anybody to know that I have PNE and I want to spread awarness to the entire world and to people suffering with this and doctors about this, so yes, I volutarily post my picture of myself on Pudendalhope.com and I voluntarily gave everyone here my facebook username. I am not ashamed but I am instead determined for the entire world to know about PNE and to bring awareness to it instead and for us to have a face with our medical condition instead of just a name. I noticed that only Celeste and I have pictures of ourselves on here, which is fine, but I am not ashamed or afraid of people knowing I have this but instead I could care less and instead just want to help bring awareness and help FIGHT PNE!!!!!!!

Shawn