Have you ever noticed ....

[Karyn]

That no one really wants to hear about your pain? Not family member, not friends, not even doctors who are supposed to be treating you? It's almost as if they think they're going to catch whatever it is you have, just by listening to you! Even if they ASK, "how are you feeling" or "what are you feeling?", it seems that once you begin to answer, you can almost see a switch shut off before you finish answering. Or that's been my experience, anyways. How about you?
I'm so grateful for the people on this forum!
Warm regards,
Karyn

[Amanda]

Karyn

I have to agree with you that some people just dont want to listen once you mention that its anything to do with the nether regions.
I remembr years ago going to see a Urologist who had treated me for kidney stones previously, but once i mentioned the burning and other sensations he slowly moved his chair and crossed his legs as if to say im not catching this pain...at the time it was funny, but now that i think of it maybe it was just an insecurity as he definitely didnt know what was wrong with me.
I suppose we cannot really expect people to understand what it is like, but if they would listen to some of our symptoms then it would help us to think they are understanding.
The best way I have found is to show the letter to explain about Pudendal Neuralgia is the only way to get the message across clearly without embarassment.
When I was compiling my symptom list to take with me to doctors, some of my family didnt believe that it was that bad until they read the list...they didnt comment much but never disputed my symptoms after that.

[Celeste]

When you make a bid for somebody's attention, they have to empathize. When they find it's about pain, especially a shameful kind of pain to some, they don't want to go there. They only want to empathize with the happy.

It's hard. You kind of need somebody who's been there, but who still has something to give to those in need. Some who would otherwise be good can be depleted.

[kat]

It's sad, but I understand what you are saying. I notice it is for a few reasons.
1 = they literally can't understand where we are coming from so they don't know what to say
2 = they believe that now we are 'fixed' because we had surgery so why are we still in pain
3 = they can't function when they hear the word vagina, burning of genitals, orgasm

I've noticed that the people on this site are able to talk and listen to one another like adults. It is very refreshing to have adult conversations about PN and related disorders. I don't understand why people shut down when it comes to the genitals. God gave them to us as a gift. Why are people so ashamed to talk openly about them? We should be proud of our bodies and the fact that we are all fighters by nature. Let's face it, if we were not fighters we wouldn't be here. We would be drinking or on drugs trying to escape the physical and mental pain PN causes. We should be proud.

Keep talking to those docs, friends and family. We need to so the next generation doesn't have to go through this like we are. They will be diagnosed and treated in more respectful ways than we are having. We owe that to the next generation of women.

That's my opinion on the matter.

Kathy

Remember, you can always talk to me. I'm here to listen or to give advice it you want it.

[Karyn]

It's hard. You kind of need somebody who's been there, but who still has something to give to those in need.

I think that pretty much sums it up in a nutshell. I can remember talking to my Mom when I first found out about PN(E), describing the symptoms with her and telling her that the condition was considered "rare". Her response was, "Well, you get to experience something that most people never will". I have mixed feelings about that statement but I do have to say that while I've always been a compassionate person, that has definitely been taken to a higher level with becoming intimately aquainted with chronic pain. Before PNE, I used to do a lot of volunteer work with Seniors, mostly home visits. I really, really miss that. I'm unable to do the visists anymore but there are a few that I still speak with over the phone. Still rewarding, but not the same. The bulk of conversation always consisted of how they were feeling and what doctor appointments they've been to and have coming up. It's been my experience that most people find this distasteful but it made me feel good to be able to listen to them, without censorship. I realized I can't take away they're hurts but I also realized that it made them feel better to be able to discuss it without being dismissed at any point in time. I also made it a point to touch them at every opportunity. Whether it be hugs in greeting and upon departure, or holding their hand and gently rubbing the top of it, or rubbing their arms. I now know what it truly feels like to be on their side of the fence.

It is very refreshing to have adult conversations about PN and related disorders. I don't understand why people shut down when it comes to the genitals.

I agree, Kat! But I also think that people shut down at pain in general. Not just PN pain. Genital pain just pushes them right over the edge!
Warm regards,
Karyn

[kat]

I also used to do a great deal of volunteer work. I've worked with early intervention with children with different illnesses all of my adult life. I always wanted to be a voice for children since they are not old enough to have a voice of their own. Now I truly understand what it is to have no voice in my life. I no longer have the luxury of deciding when I will sleep, shower or be able to hold a conversation without being distracted by pain, a medicated brain that thinks slowly, or the fact that I need to run to the bathroom.

I want to do all my shopping online and my friends and family want to do my shopping for me to save the shipping costs. I feel like that is the last bit of normalcy I have and now that is slipping away because financially I need to save the money since I'm not back at work yet. Winter is coming and I need long skirts, long sweaters, knee socks and night gowns because I'm still not wearing pants and I can't even enjoy shopping for these few things. I'm learning to let go, but some days I really miss life before PN took over.

I know it will get better. Surgery really helped and I get stronger every week. Sometimes I just get so impatient.

Thanks for listening.

Kathy

[Karyn]

Hi Kat,
I would think it's more than reasonable and understandable to feel impatient about wanting to do simple, normal things after so many years! How could you not? I am also dreading winter and think every day, "What am I gonna wear?!?!?" I know it sounds silly but I've truly enjoyed wearing flat, slide on sandals and cute sundresses with no waist this summer.
Even though it's October, I'm still wearing long, elastic waist skirts with no hose and slide on sandals. Even with the elastic waists, I have to be careful because of the pain in my hip and lower abdomen area. I'm wondering if I can pull off wearing tights this year. My underwear is 2 sizes too big for me and that 's the very first thing that comes off when I get home from work (Bra next!). I bought a couple of pairs of "Earth Shoes" ankle boots with zippers on the side yesterday at Walmart. I'm very excited about no laces but am wondering how I'm going to manage to zip them - very quickly, I think!
I think it's fantastic that you've worked with children to help give them a voice about their illnesses. How did you become involved with that?
Warm regards,
Karyn

[kat]

I got involved with children because as a child no one seemed to listen to me. I didn't sleep as an infant and the docs told my mom as long as I didn't loose weight that it was fine. I threw up after most car rides and we all thought it was car sickness. I stopped telling people I was throwing up because the car sick pills made me fall asleep so I would just go into the bathroom, throw up and act like nothing happened. My teaches at school never noticed that I did that each morning before class. The pain would be so bad it just made me sick. Plus nausea is a symptom of PN so now it makes sense that sitting made it worse.
As a teen the docs kept giving me birth control and anti-anxiety pills to deal with the pain and I hated taking pills I didn't need so I would just fill the scripts and then throw them away. I wanted my parents to think I was happy so I just smiled like everything was fine. As I started dating I would just break up with my boyfriends when I had a flare up or I would lie and say I was bleeding.
Marriage was very hard because I could no longer hide my condition. When I started loosing the ability to walk it was all over and my secret condition was out. I was diagnosed 6 months ago.

My mom took me to every doc, ran every test and even allowed me to have exploratory surgery. She did all she could and it was killing my parents that I was sick all the time so to end their suffering I just lied and said all was fine and would go through great lengths to hide my condition.

For some reason children trust me and open up to me more than many other adults. I think it is due to the fact that I'm 5 foot 98 pounds. I am very small and not a threat. Adults are scary to children at times just because they are big and loud. God always told me to take care of kids and so that is what I did. It seemed natural. It was hard to become the defenseless one always needing someone to care for me. My boyfriend said that I spent my life caring for others and that is why they are so willing to care for me now.

That's why I work with kids and those less fortunate than myself.

Kathy

[Karyn]

Hi Kat,
I'm really glad you finally got a diagnosis and are on your way to feeling better. It must've been hard hiding your condition all those years.
Wishing you the best,
Karyn

[kat]

Karyn -

I'm sorry you have had such a tough journey with PN. I'm glad you are here though to share your words and experiences.

I was thinking about what you said about others struggling and seeming unwilling to discuss the pain we have and I have another question.

Do you think that people can deal with pain but not chronic pain?

It seems people discuss surgery, pain and illness, but when it comes to a 'condition' something that is chronic they shut down. I'm starting to believe it is because they are helpless and don't know what to do, think or say. When someone is sick or has surgery the answers are easy. Take them to their appointments, run errands for them and spend time with them as they heal. When pain is chronic and we 'look' happy than people get confused that looking happy is the same as looking healthy and they don't realize that we still need them to help us as if we are sick. PN seems to be a condition people treat and live with, but does it ever go away? Will we always need help to function? Is that what those that struggle to talk with us about it are thinking?

I give updates to my friends and family and it has really helped all of us understand this condition since it is so new to all of us. I am so blessed that everyone around me has risen to the occasion and has done more than I ever expected to make this chapter of my life comfortable. I wish all of you had a support system like I do. I am very blessed.

I'm hear to listen if you need me.

Kathy