Health Organization for Pudendal Education

Are you honest about how much you hurt? Or like me, do you say you're doing fine when you're not? I feel embarassed for always being weak, always being broken, when everyone around me is strong healthy and full of energy. Unless I'm just in agony, I fake it... I try to keep up with everyone else... I just don't sit (that would make me hurt more).

I wish I could be honest w my friends but I feel like they never ever understand me like you guys do. I mean, they all know I have a severe issue with sitting (I don't hide my condition), but I don't share the intimate details of the pains, ups and downs of each day w/them... they say hi how are you, and I smile and say good, how are you? big sigh

I don't have very many friends where I live. In fact, I only have one that I actually see on a regular basis. And yes I share my pain with her. She is a very caring person and has gone through some physical pain too with skin cancer. But I don't know how the average friend would deal with it.

I hit my pain for 32 years. I tried to complain and after the docs decided I was a head case I stopped talking about it completely.
I lost most of my friends and my job.
My dad, boyfriend and sister are the only people, other than those with PN that get how broken I truly am.
My mom and brother simply refuse to get that I am disabled. They think it is mind over matter.
I am terrible hurt by this. It honestly breaks my heart that they don't understand.

I don't judge though. We are all where god wants us to be and people can only learn when they are ready.

My advice is do not do what I did. Continue to try to talk, but understand that it is impossible for people without PN to truly understand you.
My dad, boyfriend and sister only understand because they go to the doc appointments with me, ask continuous questions and do research on their own to understand. Anything short of that will not allow a non PN person to get what you are going through.

Know that I am always here to talk to you and listen. I didn't have this site during my struggle and am so happy to have it now.
I honestly feel it saved my life.

I'm here and understand that only those that have walked in your shoes understand your situation.

I had to take a 2 hour nap after 15 min. of PT exercise. I understand your weakness, shame and guilt for not being able to do simple things to live your life.

I'm sorry you are dealing with PN but don't give up. The more we talk the more awareness and understanding will grow.

Loves

::raising my hand as a fellow co-dependent::

I think growing up with an identical twin is the epitome of co-dependency. I too have read a couple of books about it and they were very enlightening.

After giving this some serious thought, the only people I'm open and honest about my pain is you fabulous folks. Sure, I've tried to describe it to friends and family but as I mentioned on another thread, they really don't understand, can't relate and don't want to hear the gory details. I know it's not because they don't care, but people really, really don't want to hear about your pain in detail. Even my husband, who LIVES with me, will sometimes notice that I'm having a particularly bad day and he'll ask me, "Why don't you just sit down and relax"? Sometimes, I have to dig deep to remind myself that he's speaking out of concern for me. More often than not, I want to throttle him!
I'm with you Pianogal. I lie. I'll say I'm fine when I'm not. And like you, I don't try to hide my condition but I'm very embarrassed by my limitations.
Quite frankly, I think I deserve an Emmy for pulling off working fulltime. There are precious few people who know there's anything wrong with me at all.
I don a pleasant, positive attitude everyday and I've got a cheerful smile plastered on my face. People don't want to interact with you when you display pain, so I don't do it. I'm a completely different person at home, at the end of the day, though ....
Warmest regards,
Karyn

I'm completely open and honest about my pain with my mother and my husband, but I still try to shelter them from the horrid truths. Does that make sense? I don't let them know about *every* bad day or pain flare, because they don't need to go there with me all the time. I do better when I'm distracted, and I need them to distract me from where I am, not join me in the depths of despair. But both of them have seen/heard me cry on the days when it's just too much to bear alone.

I broke down in front of my first friend about a month ago. She and her husband had my husband and me over for dinner. While they were watching football, we chatted in the kitchen. One topic led to another, which led to me sobbing in her arms. I hated to dump that on her, but it was so freeing to let her see the pain I feel. Again, I don't let her know every time I'm crying inside, but it's nice that she saw that moment and can understand a glimpse of what I deal with. She actually thanked me for being open and allowing her to help me.

My other friends actually all know that I have pudendal neuralgia, and what that entails. I have another friend with pelvic pain, so we've shared quite a bit. The other friends--I try to keep things factual. I really feel that I'm blessed with a wonderful group of female friends who are not scared away by pain or health problems.

Now my coworkers, in-laws, and extended family are another story. They know I have a "nerve problem that causes pain in the hip and pelvic region" and that I bring a cushion to restaurants and dinners. That's about it. I don't really feel the need to share anymore with them. They have NO IDEA the amount of pain PN causes, because I hide it. It's just easier that way. Even if I have surgery in the future, I'll probably just equate it to a difficult back surgery and recovery and leave it at that.

All my best,
Lauren

Karyn wrote: Quite frankly, I think I deserve an Emmy for pulling off working fulltime. There are precious few people who know there's anything wrong with me at all.
I don a pleasant, positive attitude everyday and I've got a cheerful smile plastered on my face. People don't want to interact with you when you display pain, so I don't do it. I'm a completely different person at home, at the end of the day, though ....
Warmest regards,
Karyn

Oh Karyn, I have definitely thought I deserved an Academy Award for my acting skills at work! Especially when I was in a months long flare last winter. Oh, I was so miserable. But my students and coworkers never knew. (Well, they noticed the inconspicuous cushion--hard to hide that buddy!)

I feel so sorry for my husband, in that he sees that different person at home at the end of the day. I tell him there are many crowns in heaven for him!

such a great discussion. totally much more open on the forums than I am with people around me. For me it's about trust, and telling people who truly care. So, kinda on a "need to know" basis. Everyone has their struggles, I have a nieces and nephews in their 20's and I think it puzzles them but they get it and I've been pretty straight with them. I feel like I've set good boundaries, and the people who care about me, I share with. I like to reserve some 'bitch time" with my husband. I schedule it, like "OK, I need 15 minutes to feel sorry for myself" I get it out, and we move on.

Cora

Karyn wrote:
Quite frankly, I think I deserve an Emmy for pulling off working fulltime. There are precious few people who know there's anything wrong with me at all.
I don a pleasant, positive attitude everyday and I've got a cheerful smile plastered on my face. People don't want to interact with you when you display pain, so I don't do it. I'm a completely different person at home, at the end of the day, though ....

Karyn,

You deserve more than an Emmy for working full time---- with PNE, you deserve a freakin' lottery check!!!!

Love ya,
A's Mommy

And oh, to answer this post, I don't lie about my condition. I don't beat around the bush. I am waaaaay too much of an open book. I think the most secretive I've been about my pain has been w/ my husband because he was always so frustrated he couldn't fix me and I didn't want to let him down.

pomegranate wrote:I feel so sorry for my husband, in that he sees that different person at home at the end of the day. I tell him there are many crowns in heaven for him!

Hi Lauren!
Yup - I'm always thinking the same thing! My poor husband also sees the "what's left" of me at the end of every day. And it's not much!
There's no cheerful faking it when I get home from work. I'm so very grateful for all the things he does to help me each evening and for putting up with my non-cheery crap.
Warm regards,
Karyn