Health Organization for Pudendal Education

I have been asked to repost this letter.

"Please understand that being in pain doesn't mean I am still not a human being. I have to spend most of my day with this pain and I probably don't seem like much fun to be with, but I am still me within this body.
Please understand the difference between being `happy` and `healthy`. When you have the flu you probably feel miserable with it, but I have been in this pain for years and I cannot be miserable all the time. In fact I work hard at NOT being miserable, so if you are talking to me and I sound happy, it means I am happy. That's all. It doesn't mean that I am not in a lot of pain or extremely tired or that I am getting better, or any of those things. Please don't say "Oh you are sounding better". I am not sounding better, I am sounding happy.
Please understand that being able to walk for 10 minutes doesn't necessarily mean I can walk for 20 minutes. And just because I managed to walk for 20 minutes today doesn't mean I can walk the same today. It is just as confusing for me as it is for you.
Please understand my pain is variable. It is quite possible that one day I am able to walk to the park and back whilst the next day I will have trouble getting to the kitchen. Please therefore don't attack me when I am in pain one day and you say "But you did it before". If you want me to do something then ask if I can. In a similar vein I may need to cancel an invitation at the last minute and if this happens, do not take it personally.
Please understand that getting out and doing things does not make me feel better - it can often make things much worse. My pain can cause secondary depression (wouldn't YOU get depressed if you were hurting all the time?), but it is not created by depression.
Please understand that if I say I have to lie down/take these pills now, that I have to do it right now and it cannot be put off because I am out for the day or whatever.
If you want to suggest a cure for me.......don't. It is not because I don't appreciate the thought and it is not because I don't want to get well, it is because I have had almost every single one of my friends suggest something at one point or another. You can try them all then realise you are using up so much energy trying things that can even make you worse.
In many ways I depend on others who are not in pain......sometimes I need help with the shopping, cooking or cleaning. I may need the help of the doctor or physiotherapist. I may need people at different levels, they are my link to the outside world, and as much as possible I need you to help me".

Thanks
I edited it to fit my story a bit.

Ray

I have said these very things to my friends many times. People judge you when they see you walking one minute and having to lay down the next. I have a reclining power chair that I modified with an ottoman that replaces the leg lift. People look at me funny when I get up and walk to the bathroom as if to say : why do you need a wheelchair, you can walk?" They don't realize that walking irritates the Pudendal nerves at the pudendal canal. One minute I am laughing and talking and in a second I will go into a pain attack that is crippling. Most of my friend understand thankfully and are helpful when that happens. But I do what I can when I can and when they see me doing things that in their minds I shouldn't be able to I know they wonder "Well if he can do that what is his problem" They don't realize that I am just trying to make the most of what relative good time I have which comes in spurts. I, like you try to be happy and not wear my pain as that puts people off. But I cant always do that. I hate it when people say "you must be feeling better today". I want to say "no I am just not as bad as the last time you saw me and that could change before we finish this conversation". But I just smile and say nothing. When people say "how you doing" I just smile and say "I'm doing" or "I am". I swear the worse thing (almost) about this crazy affliction is that people just can't grasp it. I have tried a million ways to answer their questions and they still walk away shaking their heads in confusion. Go figure.

Amanda was very touched by your letter! I to will edit it to fit my situation! Oh if only the desease was easy to explain! I just say "I have a trapped nerve in my pelvis, and no it isn't operable in my case" I find I get an"ooh" then a pained look then silence! Works like a dream! Thanks again for your elaqance!
Anna

Hi Anna

I didnt write this letter but just posted it for members to read it and rewrite it for their own situation.

We are all individual and need to explain to others who dont understand how we actually feel on a day to day basis.

Several Members have asked if this topic can be brought to the forefront so here it is.

This is somewhat related, I have found that the best way to explain it someone PN without getting graphic is:

"This nerve controls both the body's septic treatment plant and the playground."

This usually get the point across well, even medical professionals need a reminder sometimes.

Also I have used the analogy: Imagine the pain 5 min after your testicles are impacted and have that stay with you forever.

And: You know that nerve when you were pregnant and the baby kicked and you either felt a whole lot of pain or had to go to the bathroom RIGHT NOW! IT's THAT nerve.

Great Analogy!
You are so right! Even close family members cannot get how painful it is to have pain in the sensitive areas that involve 'elimination'!
(not to mention sitting.)
They also don't understand distance when it comes to driving etc. For ex: I hear "But its only a short ride..That should be ok for you".

Wrong! The pain is "on contact"! Once I sit, pain ensues.. I do admit that very local rides are a bit easier when it comes to "after-pain", than longer ones.

I can so relate to the person who said the best they can offer up when some asks how they are doing is, "I'm doing" or "I am" as I use those replies myself. I actually dread being asked by friends how I'm doing as I don't want to be honest and say I feel like crap, still.... There are no words to describe how irritated I become when someone suggest I take herbs or try this or that exercise to heal myself. I have found the dealing with chronic pain can be isolating as being around well meaning friends can be emotionally draining, trying to explain this condition to them. I plan to print out your explanation, tweak it a bit to fit my situation and share it when appropriate. Thanks for sharing with all of us on here. It's a great tool.

You are so right. It is not an easy thing to explain pain in the pelvic area. The type of symptoms we have just aren't something you talk about freely to people so it is very isolating.

Violet