Health Organization for Pudendal Education

Hello everyone;
It occured to me on one of those midnight can't sleep nights that our other halves have no where to go to let off steam. In most cases, I'm sure they love us, BUT I bet they would like to go someplace safe for them where they can just bitch about us and learn that they aren't alone either. My husband is not a emontion talker but I know he does say some things to a friend at work. This group of Mod's have saved my life and I think literally. Their knowledge has saved me tons of money and time. All the other PNR's have saved me the same. Just maybe some family's can be saved if our other halves have a place of their own to go. Personnaly, there are times I could strangle my husband, but that doesn't mean I don't love him more than life itself. What do you all think
By now, most of this site knows I don't have any computer skills to set something up for them. Maybe someone out there does. Does this sound like a really dumb idea to one and all. Maybe I just have to much time on my hands to think up crazy ideas.
Wishing you all well;
Doreen

Hi Doreen!
What a brilliant idea! I was thinking the same thing! Like you, I also have a husband who's an excellent man, but not good with having emotional discussions. I had posted on the "old forum" about how even though I've been living with this for 3 years, it took him 2 years to actually say to me, "I'm really sorry you're going through this". Our condition definitely affects those we're close to and those we live with. Not only has our lives drastically changed, but theirs has, as well. And while we're suffering in this horrible pain and feeling helpless, I think the feeling of helplessness is magnified to the "nth" degree for our families and significant others. And like us, they probably do feel alone.

Quilter 2 wrote:This group of Mod's have saved my life and I think literally. Their knowledge has saved me tons of money and time. All the other PNR's have saved me the same. Just maybe some family's can be saved if our other halves have a place of their own to go.

Yes, I couldn't agree more! I wouldn't wish this condition on anyone, but there are no words to describe how comforting and supportive this forum has been to me. To find a group of people from all over the world who knew EXACTLY how I felt and what I was going through made all the difference in the world. So, maybe we should post our request in the "SUGGESTIONS" topic? Hopefully the Mods could create a thread: "For Family Members - discuss what it's like living with a PN person", or something like that ...
I don't know if my husband will actually participate, but I'll certainly suggest it. I hope he does. Would you like to make the suggestion or should I?
I hope you're getting somewhere with your insurance. Please let me know!
Warm regards,
Karyn

Karyn;
Go for it. I'd probably screw it up. As far as my ins. goes, Dr. Quesada wrote the company a very nice letter, so I'm told, and I've sent oodles of Botox info to them. Yesterday, I faxed 24 pages to them. They might let me try it, just to get rid of me and my mailings.
Oh, I finaly got the HOPE letter to come up on my puter so you don't have to try and send it to me.
Thanks;
Doreen

Hi everyone;
When I said safe in my previous post, I meant a place where we can't read, unless they wanted us to. I don't think many would use the site if they thought we could see how they really feel some days. Just wanted to make myself clear.
Thanks;
Doreen

Hi Doreen and Karyn

I have moved your thread here into the announcements Section.
Yes it is I think a very important point that Spouses, Partners and Family members do not have a private area where they can discuss their fears and worries so that they do not upset us but yet they can be honest and let off steam.

As for the actual creation of a separate area this is not difficult to do from an Administration point of view.
I will take this suggestion and put it to our Technical Team and we will let you know how and when we have figured out a possible plan to implement this suggestion. As Moderators we really appreciate all suggestions from our members, we aim to provide a safe and friendly place for everyone.

Thank you

Thank you, Amanda. As I mentioned earlier, this forum, well, I consider it a SUPPORT GROUP, means the world to me and all of the members have made a huge, positive impact on my life. I'm very much in favor of offering a spot for Spouses, Partners and Family members, but the emphasis HAS to be on SAFETY and RESPECT. I'm not sure how I feel about locking other members out, and I can see where this may make the Mods job more difficult. I agree with Quilter2 that this potential area of the forum should allow significant others to vent their frustrations but it should also be a place of learning, too. I guess what I'm trying to say is, I'm concerned about that "safe place" being compromised by an offended partner reading the posts. On the other hand, giving access to all members may provide support and comfort to the PN family member. Boy, I really flubbed this one up, huh?
Anyone else have any feedback? And not about my flubbing ...

Love this idea. I was thinking about this yesterday. My man is amazing, but it's hard for me to understand his point of view at times. This condition has taken his happy, silly and affectionate girl away and it would be great if he could talk to those about how they handle starting over after surgery. It's hard for him because we can't pick up where we left off. My body is healing and changing everyday and it's exhausting for us. It seems there is little time for a relationship between pills and doc visits. Our other halves deserve a place to talk and support each other. I'm so glad you thought of this.

Kathy

Karyn;
You didn't flub anything up. I feel you made some very valid points that didn't even cross my mind. In fact, my husband said almost the exact same thing you did. I really agree that it would be a learning experience if we could see how our other halves feel. On the other hand, would they actually say what they think if they thought we could read it? Hey, this simple idea is getting complicated There are just so many ways to look at things.
My best;
Doreen

I hear your point about - would they say what they meant if they knew we could read it.

Would it be possible to have them change their names? Some of us know each others partners so feelings might get hurt if we hear what they say about us and our friends.

Just a thought

Kathy

Well, Support Group or Forum ... every post we make is public to all members. I think that's kind of the point to this. For instance, I'm not posting anything here that I wouldn't want my husband or anyone else to see. I do have a little bit of a hard time wrapping my head around creating an area for Family & Significant Others if it's PRIVATE and exclusive only to them. Bottom line - I still think it's a great idea. I'm just concerned about making the Mods job more difficult. I dunnnnoooooo ....
Warm regards,
Karyn