Health Organization for Pudendal Education

How do you get back up again, when someone you love is suppose to be supportive knocks you down? I really wished the blocks worked for me, but they didn't they caused more pain, I use aromotherpy. I dont really know how to meditate...Its' something i need to work on! But i didn't show any emotion, unfortunley my stepkids saw me crying so hard i couldn't stop. And I am shaking while writing this. But is there anyone else out there who doesn't have support like me.. we can be each others' support system. I don't know what to do anymore, I have been struggling with this for sometime now. I have had pn since 1/08. And a family who doesn't want to talk about it. I don't show emotion when i am arond them if i am in pain(which is pretty much all the time). I walk away and deal with it. Thanks for even well just listening, i have calmed down just by writing this. Thanks

Hello Elephant,

I agree, sometimes it's easier to just keep it all inside and put on a brave front when you are around people who don't have a clue what you are going through. It's hard though when you feel like the people who are closest to you are the ones who should understand but they can't really relate to what you are experiencing because they've never gone through it themselves.

So, I was reading back through your posts and you said you have had a couple of nerve blocks -- one that helped for about a month. What are you thinking you might want to do next as far as treatments -- or are you burned out on treatments?

Violet

I think that we just have to accept that even people really close to us just won't 'get it'. To be honest I wouldn't really want them to, as that means they suffer along side and that's not what we would want for those we love.
So that is when this wonderful support system can step in giving people the ability to tell it like it is and vent, sob, shake and get as emotional as necessary to get it out of their system. We DO 'get it'
Take care,
Helen

I agree of course with Violet and Helen. I also found that focusing on a way to get better was a key for me to get through. With some input as Violet asked maybe we can help you figure out a next step. I am so sorry you do not have a support system at home but I know others have gone this path and believe you can as well. Take Care
Janet

I'm so sorry to hear that you are struggling and I hope that we can offer you some comfort, even if it is just online. I know this forum has really helped me a lot, even though my family thought that I needed to stay away from "the crazy internet people" at first. Now that I am getting somewhat better they don't tell me to stay offline anymore!

Maybe you can tell us what you have tried and we can offer you some suggestions. It can get better, when I first started writing on here I was suicidal from the pain, and now I feel better (not 100% but more comfortable) and I have hope again.

Hugs,
Jackie

I went through the same thing; trying very hard to "do for" my kids and not wanting them to have the burden to support me, and having an unsupportive husband. I don't want to sound critical of my husband because i picked him knowing he was that way. I have had Interstitial cystitis since age 14 and i met my husband when I was 16 (That's 25 years ago). He was a cute boy and i didn't want to scare him off with illness so i let it be "my problem". So since i was already chronically ill, I could have looked for a man who was nurturing and supportive and i did not. Emotional support is not in his nature, he is a hard working excellent provider, did whatever he needed to do financially to help me, but is not into talking about emotions and abstractions so when I talked about PN a lot he freaked out and said that he didn't know how he could stay if I "became an invalid'. So i learned not to discuss it.
After he kind of threatened to leave that one time, I will tell you what I did because it is true...mods if you think the rest of this post is inapprpriate because of religious commentary, please do not edit just delete the whole thing.
1st I just walked away quiet because i learned a long time ago that arguing causes resentment doesn't solve problems. The next day I got alone with him and told him very briefly, look before i knew God you were like God to me and I would fall apart at the idea of you leaving. Now i just want you to know that I love you and you are my husband and i do not want you to leave, but if you do we will be fine. God is who I really need not you. God will take care of me and the children if you are not strong enough to handle it. I think that kind of surprised him...that was 3 years ago and I just stopped talking about my illness to him except for practical planning / financial purposes and our marriage has been fine. But that is what i have found, some people do find support in another person but for some of us, there is only me or you, the individual, and God. And He is all-sufficient. More support would be nice but it is not necessary because God will catch you EVERY time you fall.
There is also nothing wrong with breaking down in front of the kids occasionally. We do not want to be a burden to them but we do want to give them the opportunity to excercise compassion. My one and only big pity party I had for myself was over my 1st insurance rejection for the surgery I was SO SURE would be approved. I picked up the kids and couldn't speak and as soon as i told them I started to sob. I got hugs and my son went to his room and came back with a beautiful list of Bible verses he had copied for me about persevering through trials. I think that was good for them, not bad. Much love to you and that is what I have to say, sorry mods if this is not deemed appropriate.

Beautiful post, Hermajesty. Regardless of religious beliefs, I do think it's important for everyone to have some kind of faith in a higher power to help get us through this.
Hugs,
Karyn

Just want you to know your not alone; any of you. I cry as I read these posts. Not sure why. Thanks for writing with sincerity!

i am going thru the same issue and i totally understand where your coming from..i have not been dianoised yet,but am struggling with something that i am pretty sure is some type of PN or PNE..i too like you are in pain almost 24 7 and my husband has been awesome thru it ,but my closest friends have NO clue and say really dumb stuff about it!! like 'cmon just drink it will take everything away" or" really??? they still have NO idea whats wrong with you" or i get the 'LOOK" when i start to explain what i have been tested for..it's almost like 'really" i feel like there looking at me thinking ok she's a 'hyercondraic now!!! and i am so the oppisite of that!! i have had stuff done to me that would sent others running screaming and i never complained about NONE of it!! this heck,this is totally different!! it has inpacked my entire life!! the pain is horrific and constant!!! i wish ppl understood ,but they dont and it makes this harder
please know your NOT alone and even if i dont have this i got something messed up and i feel just like you!! alone and fustrated!!!

Hi
I have commented several times about this subject! I call it "little house on the prairie envy" please will all of you with truly loving partners, and I know there's many forgive us please! Unfortunately we are with partners who will not or cannot empathise after dealing with(in my case)one operation after another, in his words"I'm worn down with it Anne" (lovely) but he sees to all the "nuts and bolts" which keep our home in order! I just never get asked how I am, his answer is that he knows what the answer will be! So I just get on with it cuddle my beautifull cats, enjoy my art( he is strangely very encouraging about that?) I get to talk to some lovely people both on here and now on face book now and my hairdressing although less hours keeps mein close touch with friends and clients! Please don't feel your alone! Not all of us are sharing our homes with "saints" ha ha ( not meaning yours is Helen, I'm sure he's mortal!
Anne