I can't sit down at all anymore and it is upsetting.

[Kara29]

On Monday of next week, I am having the Pudendal Nerve Block with the steriod. I am still at my parents house. Because of the weather and the painful fact that I can't sit down at all anymore, I am not going back home until next week. I tried to watch American Idol with my Granparents last night. Of course there was not bed in thier TV room so I had to sit at first. I just could not do it. The pain was so bad I was miserable so I tried to lay down on their floor with some pillows. It was hard and it still irritated me to no end. The pain of PNE is excruciating!

I am upset because I could not enjoy American Idol with my Granparents. I found myself feeling hurt and confused at how they are 80 years old and they sit from morning until 11PM. That is sick, when you envy your Granparents just because they have the ability to sit.

I am hurt and angry. I wish there were some easier answers.

Sitting is important...........

Kara

[Bessie]

I am so sorry Kara. I know how you feel. I also have a hard time with sitting, driving, etc. It is so frustrating. I have been at other people's houses visiting and I have to stand up after a few minutes of sitting......and then of course they say "sit down" and I have to let them know that I can't sit down right at the moment. I know they don't understand but it can be so frustrating at times.

I did get to watch American Idol last night.....I had to stretch out on the couch. Is there any chance of finding a roll out cushion that you could take with you when you visit your Grandparents? Maybe like a roll out futon or something like that?? Just trying to think of something that might help.

That is so awesome that you have your Grandparents. None of mine are still living but my husband's grandmother is still living and will be "101" in February. I just love her and love to listen to her stories.

Hang in there and good luck with your procedure on Monday. I will be praying for you :pray:

[Kara29]

Octoberfarm,

Good Idea! My Dad has these foam roll up beds that he uses for hungting. I am going to ask him if I can borrow one of those. Just for close family. I don't want to go to my Friends homes at this point. Thank God I have Disability because not being able to sit down is truely a Disability. The experts on PNE advise their paitients not to sit as it causes more damage to the Pudendal Nerve that CAN NEVER be fixed. Some of us who have to travel to see these doctors have to lay down the whole time in the back of thier cars or on the planes.

Thank you for taking the time to read this and post. I appreciate your caring nature.

Kara

[leelee88]

Kara,
I cant even imagine how you feel..Well the only thing that I can even relate to that is after having my first child, I couldn't sit for weeks and the only time I had any relief was with a sitz bath..I just dont know how I would of been able to handle the pain as long as you have. You truly have an inner strenght..

I honestly wish I could help you in some way, I feel so helpless though...
But I will keep praying for you .......((((((Hugs))))))))))

[SharonA]

Kara...You are too strong of a person to "lose the fight". I don't think I have ever encountered anyone else who has more fight in her than you. You are a true inspiration. :kissing:

[Bessie]

Oh Kara.....you are not losing the fight.....you are one of the strongest people I have ever heard of!!!! You give others hope and stength to keep fighting this disease. You are such an inspiration to me and I appreciate your kindness and your wealth of knowledge. I know you are frustrated right now and you have every right to be.....you have been through so much......but please don't ever feel like you are at this alone. I am here for you anytime. Please feel free to pm anytime!!! If I lived close enough I would come over and just sit (or lay down :) ) and visit. I know how lonely and frustrating this disease can be. I never see anyone other than my husband. I don't drive very often so I feel like a prisoner in my own home. I live out in the country so I never see anyone except for one day a week when I go into town to get groceries. This support group is really important to me and I look forward to hearing about how you are doing :)

Get you a cushion and stetch out tonight and watch American Idol......it is such a good show and it can be so funny at times :smile tee

Here is a thought for the day:
To the whole world you might just be one person......but to one person you may be the whole world

Try to have a great rest of the day :hi:

[maryla]

Oh Kara, I'm so sorry that this is happening to you. but I know how you feel. Sunday was just aweful for me physically and emotionally, I just wanted to give up. My husband and I both made up our minds that when we go back to Cleveland Clinic this week we were going to tell Dr. Rackley to PLEASE take out my bladder.

I have been getting tested for the bio-identical hormornes and had my first appointment with the counselor Monday. She pleaded with me to give the hormornes a try. She said her daughter "HAD" sever Ic and after she finally got her hormones balanced she has been in remission for a long while. yesterday, I had what was a great day for me. Well today the pain and everything else is right back.........Sometimes I want to just stop the fight too! However, we all have SO much to fight for.......I'm still HOPING the hormones do, do the trick!

I'm scared about going to Cleveland Clinic again and going through ALL those tests again and basically telling me the same as all the other uros I've had! I'm SO tired!


I'm sending hugs and prayers your way. Love,

[Sarojini]

You are NOT losing the fight!!! Don't ever say that!!

You are going to get through this and they are going to fix your PNE, I'm sure of it. :grouphug: In the meantime, the roll-out bed idea is great. Also, we have one of those "AeroBed" things that inflates quickly but when deflated it is only about a foot square... it's a twin size bed, and over the holidays when my dad was here, he inflated it for me in the living room when I was having a flare and everyone was taking up the couch. It was great. It was BETTER than the couch :lmao: LOL

Dunno why I never thought about it before....

But remember, you're in my thoughts... and Paddington has some headbutts and purrs he wants to send you! :)

[Mel53H]

My heart goes out to you, Kara. We are your friends too!! OK!:grouphug:

[ChrissySunshine]

NOT losing the fight! I echo the others, Kara, you are a source of hope and strength for me too!

I also can't sit :mad: , that's why I haven't been on much, I can't SIT!!! Only a few minutes at a times for me. This really sucks, I know.

I went to see a doc today (I've been having a REAL tough time), and had to wait for 3 hours!!! After 1 1/2 hours, I was in hysterics. I had to lay down in the waiting room until it filled up, then they put me in a separate room that had these chairs on that I could lay down on. And I know what you mean about all the elderly!!! Tis a sad, sad thing that we can't even sit as well as someone elderly!

It is FOR SURE is a total disability.....

Sending you prayers, and wishing you luck, Kara. Keep us posted!

[Emma's Mommy]

i am sending you lots of hugs and warm thoughts!

[Kara Isabel]

I agree, sitting IS important, and you WILL not lose the fight, nor will you lose the ability to sit, because you are a VERY strong, beautiful woman! I really hope you feel better soon!

BTW...I was disappointed in Idol last night :(

love,
Kara

[sandramac]

Kara sorry we could not talk to long just wanted to let you know again how much i love you and honor your friendship! You know how to reach me any time , when you need my support! Or just someone to talk to .
Hugs Sandra :cat: :cat: :cat:

[kadi]

Sending a hug & hoping you find relief soon!

[Trishann]

Kara, I am sorry, I did not see this post, but I did PM you.

Sending hugs, Trishann

[Kara29]

A Special Thank You to: Trishann, Kadi, Sandra, Kara, Erika, Aiditacar, ChrissySunshine, Mel, Jen, Mary, Octoberfarm, Sharon and Ronda. This support means more to me than you'll all ever know! I appreciate all of your supportive words of love and wisdom! It was thoughtful of you to notice how upset I was and in need of encouragement. I see that some people still care. If I can be as supportive to you all when you are in need. It helps to give me a reason to stick around here.

Thank You!

I hope you all have a pain free day Today!

Love and Hugs! :kiss: :grouphug: :kissing:

Kara

[humpieumpumkin]

:angel:

[Sarojini]

Kara, how are you feeling today? I just wanted to check in on you and I'm hoping you're doing all right despite not being able to sit :grouphug:

[Kara29]

Jen,

Unfortunately, I am not doing well. Since I can't sit, I have to lay down all day and all night long. I usually use my laptop to communicate with people but I can't lay on my back either. There are pressure points on my butt that spark off the pudendal nerve which sends horrific pain to my urethral area. My back muscles are all spasming because they are getting weak. I am so frustrated........

Typing on here was my way of life but its so hard right now to find a comfortable position.

Thank you for asking. I wish I had some better things to say. It's been a rough road.

Kara :headbang: :headbang: :headbang:

[blackcat25]

Hi,
I'm so sorry you are still going through this - you are being so strong, you are an inspiration even if you don't feel like it at the moment.
Even my cat (black, as my name suggests) has jumped up and is pawing at the screen to comfort you!
Huge hugs,
Blackcat:cat: :cat: :cat:

[Trishann]

Kara I hope this day :help: will soon be this day:smile tee

We are hoping the best for you Kara.

[Bessie]

Hi Kara,
Sorry you are feeling bad today.
Did you get to watch American Idol last nigh?
I just laughed and laughed. I can't believe some of the people on there that think they can sing. :loco:

I really enjoyed talking to you yesterday. You are such a kind soul :)
Take care!

[sandramac]

:grouphug: :love: Hope you are better today! Thinking of you! Sandra, Darin & Izzy, Ella & Zoe too ! :cat: :cat: :cat:

[curlycue]

Kara....... I know exactly what you are feeling cuz I cant sleep at night and my husband sleeps at night during the day on weekends and its so frustrating, cuz I am jelaouse of that. Am I crazy for feeling that way. I think people take for granted alot of the things they can do and dont even think about them.

[ICLori]

Oh, man, this is awful! I hope they will help you soon. Why can't they get you into surgery right away? Surely they must know for certain by now what is wrong, so they need to just fix it!

I'm sorry you are suffering so much. :(

Blessings,
Lori

[sami4]

My thoughts and prayers are with you that you find relief soon.
Do the doctors have any idea why the PNE is so severe for you or how it may have started?
Hugs,
Sammi

[Ginny]

Kara,
I know you have done so much to help yourself so I am not sure if you thought of this. Can you get an internal pain pump? Medtronic Mini Med makes them. I know people with really bad back pain get them.
Just trying to think of something that might help. I can't imagine what you are going through.
Hang in there.
Ginny

[Kara29]

Ginny,

I am alleregic to narcotics and they seem to make the pain worse. That is why we are not doing the pain pump. I asked if they could put another medication in there but they said no. They don't consider me a candidate for any kind of pain pump. I wanted to see if they could put lidocane in there or marcane for some sort of numbing medicaton. They told me it would paralize me from the waist down.

Sami,

PNE can be this extreme in anyone that has it. They do not know the cause. They feel it has been there all along and that the Pudendal Nerve is becoming more damaged with time. In other words, this could have been the start of the problems 9 years ago. That could possibly be why it is so severe. They ask thier PNE patients not to sit if they don't have to. If I could sit, I surely would do it.

Lori,

I have one more Major Test in determining where the nerve is trapped. I think my doctor said it could be entrapped in one to 4 places. I will know more in March. The reason it takes so long to get into surgery is that they have to absolutely rule out everything in the world that it could be before they mess around in there. It also takes so long because there are only a few and I mean like 4 doctors in the whole Unites States that actually do the decompression surgery for PNE. The doctor that would be doing my surgery does a special surgery called TIR. He's THE ONLY one in the United States that does it so the waiting list is VERY long. He has men and women coming from all over the World coming to get diagnosed and treated by him. So I have to wait for just for the Test and the Evaluation. Then if he feels surgery is needed, I have to wait. He's an OBGYN also so he does a LOT.

I just called today to make the EMG Test and Evaluation to be done in March. It has not been scheduled yet.

I have to get my Car Today. My Mom has to take me so I can lay down in the back seat. She will drive my car back home.

Thanks for all of your support and kind words. They mean the world to me!

Kara:angel:

[Katrina]

Kara, my thoughts and prayers are with you. I am sorry I didn't reply to this thread earlier...but you know the situation here! :grouphug: I am praying for you!!!!! :kiss:

[waterflow]

Kara, you won't give up! You're not the type of person to. You've gone this far and you are still trying. You are giving hope to all of us and if you won't give up then a lot of us on here won't either. I wish they could get the right spot quickly and your pain will be better. Not fun laying down all the time. have you thought aobut one of those blow up mattresses? Maybe air would work better for laying down on. Just hope you have an air pump to blow that thing up and not have to use your lungs. :dizzy: Sorry some of your IC friends have left here. I've noticed a few gone since I have joined. Maybe they don't have a computer anymore or maybe can not afford interent service.
I have often been envy of elderly people as well. How can they out do me when I'm younger then they are? :confused:
I hope you get to feeling better. :pray: :grouphug:

[Trishann]

Kara, just thinking about you. I am like Lori, if surgery can stop it why not do it. I know it is up to the doctors but Grrrrrrrr. I just hope you start feeling better very soon, at least, get some kind of comfort.

Sending husgs, Trishann

[July]

I too know the distress of sitting uncomfortably, and send you this big hug:grouphug: :grouphug:

[Emma's Mommy]

glad i could be of some help....i just wish there was more i could do.

[curlycue]

kara........ I am really sorry you are going through this. I hope they find something Yesterday to get you some kind of relife and you can sit down, I dont understand how a dr can ask you if you dont have to sit down dont! How can you not. I will keep you in my prayers.

[Emma's Mommy]

kara........ I am really sorry you are going through this. I hope they find something Yesterday to get you some kind of relife and you can sit down, I dont understand how a dr can ask you if you dont have to sit down dont! How can you not. I will keep you in my prayers.

it's better for her nerve problem is she dosn't sit.....as sitting is A) PAINFUL and B) could cause more nerve damage than there already is :cussing:

hang in there Kara you're doing a GREAT job!!! :pray:

[Moonheart]

Jen,

Unfortunately, I am not doing well. Since I can't sit, I have to lay down all day and all night long. I usually use my laptop to communicate with people but I can't lay on my back either. There are pressure points on my butt that spark off the pudendal nerve which sends horrific pain to my urethral area. My back muscles are all spasming because they are getting weak. I am so frustrated........

Typing on here was my way of life but its so hard right now to find a comfortable position.

Thank you for asking. I wish I had some better things to say. It's been a rough road.

Kara :headbang: :headbang: :headbang:
I can so relate to this. When I can't sit anymore I stand, and then my pelvis goes into horrific spasms. Then when I can't stand that another second, I lay down, and then my back goes into horrible spasms. :( It's truly a horrid thing and I am very tired of it. To say the least!:cussing: :rant: :toilet:

[blondie45]

:hi: Just sending good vibes your way!

[Kara29]

I have a nerve block for the Pudedal Nerve tomorrow (for the suspected PNE/urethral pain) . But it has absoultely nothing to do with this serious back pain that I've had for a week now. The back pain is now so bad that I can't feel the urethral pain. I've tried Dilaudid which is a morphine derivative with no relief. I am hoping that there really is a GOD. I need this doctor to understand that SOMEONE needs to look into what is happening. We are thinking that it's my 7 year old Interstim. The pain is at the sacrum or tailbone. It feels like a car smashed into it going 100 miles per hour! This doctor does Cat Scan guided images that show my Interstim and the wires so maybe he will be able to see if it's pressing against a nerve. I can only lay on my sides or stand. No laying on my back and no sitting.

When I had my bladder removed I did not take any medication for pain. So you KNOW I am in HORRIFIC PAIN at this time. I am leaning against my left but cheek on an angle to write this message.......

Thank you all for you continued support. It means the world to me.


AN EPIDRUAL WOULD REALLY HIT THE SPOT!

I am lost with this.....................

Kara

[aprilmae]

Kara,

I really hope today provides some much needed information. I had a feeling you were feeling worse and I am so sorry to hear that.

Please let us know how things go when you feel up to posting again.

Sending you lots of prayer and hugs!

April

[ICNDonna]

Hang in there, Kara. You have come soooooo far --- and now the end is in sight. I think of you every day and an so looking forward to you being pain free after your long and horrendous battle.

Sending gentle hugs,
Donna

[Ginny]

An epidural is not a bad idea.

This may sound like nothing compared to the medication you have tried but it might be something to take the edge off. I have a herniated disc and when it gets bad I use lidocaine patches on my back. It's a prescription pad. It's just lidocaine in it. It does numb it some.

Hope things turn around soon.

Ginny

[maryla]

Kara,

I'm praying that you get some answers and some relief VERY soon.....you are such an inspiration to many of us here. Please know you are not alone......


God Bless you!

[Bessie]

Kara,
I am so sorry that you are in such terrible pain. I pray that the doctors can figure out what is happening so they can fix the problem. No one should ever have to be in pain like that.

If you can, please let us know what you find out today.

[Trishann]

Kara I hope they do the scan very soon, hopefully they can find out what is wrong and can fix it to give you some relief. It sounds so horrible, I wish there were something I can do to ease your pain.

Sending many hugs, Trishann

[ICLori]

Kara, I'm so sorry you are suffering so terribly. I also think an epidural might be a good idea. Can they give one that is longer-lasting than the ones usually used for surgery? I wonder if that old Interstim unit needs to come out? Seems like so many people have problems with their old units. Grrr!

I hope the doctors can help you. Tomorrow, I'm keeping my fingers crossed for you, surely this block will help your urethral pain - then they can move on to treating your back pain as well...

Blessings,
Lori

[sandramac]

Kara ! Im so sorry you have to go through this pain.I just pray that you will get some relief tomorrow.And that they get to the problem & fix it for you.Sending you love & prayers, Sandra & family .:cat: :cat: :cat:

[Mel53H]

Wouldn't it be nice to have a epidural every other day or something like that? I hope you find relief soon. I bet this all is getting pretty old by now!

My thoughts continue to be with you, Kara.:grouphug:

[sandramac]

Kara ,I called but you were sleeping.I hope you got some much needed rest! Good luck tomorrow!
Love Sandra:cat: :cat: :cat:

[Kara29]

I went for my nerve block today. There was nothing my Doctor could do today about my severe back and butt pain. I had to email my Interstim Doctor in Boston. If he wants X-Rays or anything else to find out what is happening, my primary care Doctor can do some of that in Syracuse when I go home. Until then I have to lay on my sides or stand. I am really upset and suffering. It is so frustrating to have to go back to Boston. I can't drive. My Husband will have to take me. It will be months before Dr. F will be able to get me into his OR schedule!

On the flip side. The Pudendal Nerve Block tested out to be the Pudendal Nerve again, so we are almost certain that it's PNE. The urethral pain disappeared once again. I got close to 8 hours of relief. Once the test wore off it came back. I have a few more tests to go. The steroid he put in is not supposed to work but he put it in anyway.

I just wanted to update.
I have to go. I am in searing fire pain in my back............

Kara

[ICNDonna]

:grouphug: I wish there were something I could do to help.

Donna

[Mel53H]

Thanks for the update. I also wish there was something that I could do to help you too. Thank God you have your husband there to help you.

[Moonheart]

I'm so sorry Kara. :( I have that searing back pain as well and know how horrid it is. It's almost mind-blowing it's so painful. I really hope something helps soon. :pray:

God bless,
Moonheart:angel:

[leelee88]

Oh Kara,
My heart goes out to you....
Well I guess you did have a little good news, they know now what you have , so you have a better chance of getting some relief..I just wish you could get that relief sooner..

If there is ANYTHING I can do for you please let me know..You know how to reach me..

Just try to hang in there, you have already came so far..:grouphug:

[aprilmae]

Kara,

I am so sorry to hear things did not go as well as you hoped. At least they are narrowing in on what the possible cause of some of the pain. I am so glad they were able to give you relief for a bit.

My thoughts and prayers are with you. You are doing a great job persevering and I want you to know I am here whenever you need me.

April

[Berkshire Road]

Kara -- Have you tried a lidocaine patch? I have torturous pain in my back, and when my doctor gave me the patch, I was like, "Yeah, sure, that'll help..." But it did -- a lot. It's just a transdermal anesthetic. Makes the area numb, which is like heaven compared to actually having to feel anything :)

It's by prescription, so you have to ask the dr. Meanwhile, you have my sympathy. I can't sit or stand for more than a couple of minutes without severe pain. It's awful.

Sending positive thoughts your way.

[Bessie]

:grouphug:

I am sorry you are in so much pain.

[ICLori]

I wish so much I could do something to help your pain go away. I think the lidocaine patch idea was genius, surely it is worth a try!

Blessings,
Lori

[Kara29]

I have many Lidocane Patches and have been using them along with Ice Packs. The pain is way too deep for the lidocane to penetrate down into. If it was closer to the skin in part way into the depth of the area they would probably work. No such luck with the Lidocane Patches. These patches were given to me by my doctor for upper back pain but this pain is a searing, burning fire like pain. It feels like I am being cut open and acid is being poured into my insides right in the tailbone, scaral area, and butt. The patches were Lidoderm Patches (Lidocane 5%) Each adhesive patch contains Lidocane 700mg in an aqueous base. 12 hours on and 12 hours off. Prescrption only. Ice and Naproxen are being used now to try to slow down the inflamation. I have an appointment with my PCP on Thursday.

I wish they had helped. Thanks for the suggestion. I am still waiting for my Interstim Surgeron to contact me. I am not sure if I am going to make it to then. At this point I need to be in a Hospital because the pain is starting to make me pass out.

I have to drive an hour to Syracuse tomorrow and then I may head to the ER for stronger IV meds. Unless a miracle happens and I start to feelo better.

I had to stand up to type this message. I don't understand why this is happening to me when we finally are making some headway on the PNE.

Kara

[Mel53H]

Maybe it is time for you to be in the hospital. There has to be something they can do for you, Kara. I hate to hear that you are passing out because of the pain. You body is telling you something and that is that it can't take the pain anymore.You can't take it anymore!!!

Something has to be done for you. I am really worried about you.

My thoughts and prayers are with you.

Hugs,

Mel

[Moonheart]

Maybe it is time for you to be in the hospital. There has to be something they can do for you, Kara. I hate to hear that you are passing out because of the pain. You body is telling you something and that is that it can't take the pain anymore.You can't take it anymore!!!

Something has to be done for you. I am really worried about you.

My thoughts and prayers are with you.

Hugs,

Mel
You're not going to drive yourself are you? I hope someone is going to drive you. :help:

[maryla]

I'm sending you hugs and prayers.......maybe it is time to go to the hospital.....
:pray: :pray: :pray: :grouphug: :grouphug: :grouphug:

[aprilmae]

Kara,

Please do whatever you need to in order for you to get some relief. I hope someone is driving you back today - you don't need to do that if you are passing out.

I really hope they are able to do something and do it quick to get you out of the pain you are in. Is the Interstim causing nerve damage from being in there? That burning sensation sounds like it could be nerves being irritated.

My prayers are with you.

Lots of love,
April

[Trishann]

Kara, I know nothing about Interstim but if I am hearing you right, it is the Interstim causing of all this pain you are going through. I don't understand why you can't have a emergency surgery. I can't believe they will put this thing in you and if things go wrong, you have to wait until they are ready to do something. With you about passing out because the pain is unbearable I definitely would go the the ER. Maybe they can do something for you. This is crap, (sorry I don't usually say thing like that but enough is enough).

Sending hugs Kara,
Hugs, Trishann

[Kara29]

This is MADDENING ME. My Interstim Surgeon will not get back to me. I guess to him he doesn't care that it could be serious. My parents are thinking of driving me together. One driving my car and the other their own car. I am seeing my primary tomorrow morning.

Please hear me.....I WANT TO DO TO THE HOSPITAL MORE THAN YOU ALL KNOW, BUT I DON'T RESPOND TO PAIN MEDS AND THAT MAKES THEM ALL THINK I AM CRAZY. THE ONLY THING THE HOSPITAL WOULD ACCOMPLISH IS MAYBE AN X RAY and Blood Tests to rule out infection. I DON'T KNOW WHAT TO DO. I CAN'T EVEN SIT IN A WAITING ROOM AND THAT CAN TAKE HOURS AND HOURS. MAYBE I SHOULD JUST CALL 911. I'm hurt that the doctor that did my nerve block just ignored the problem and I am hurt that my Interstim Doctor is not calling me back. I am feeling desserted by doctors once again just because its not their problem to solve........I am hurt!

Thank you for your love and support!

Kara

[Mel53H]

I understand that you are allergic to pain meds, but you would think that in this day and age they could figure something out to make you comfortable until something else can be done.

Maybe you should call 911. I don't know. All I know is we are all worried about ya lady!

[Trishann]

Kara, I was wondering about the long sit in the waiting room. They did the same thing with me when I had gallbladder disease, I was so sick and still they made me wait. I could not hardly bear it.

Maybe you won't have to sit if you call 911. I think you automatic go to the rooms.

Kara maybe there is more to this then what you think, maybe you should get check out. I am so sorry, I wish that I had answers for you to give you some relief.

Sending many hugs, Trishann

[Trishann]

Kara, just want you to know I am still thinking about you and really worry. I hope you made it home ok.

Sending hugs, Trishann

[ICLori]

I'm so sorry you are hurting this badly and that no one is helping you right now. :( I've been a drama queen lately so I haven't been very helpful, I'm sorry.

I keep wishing they could just give you an epidural like before.

You know what some of the options Dr. T. discussed with me today are? The same kind of nerve blocks/denervation etc. you have been looking into.

I still worry the docs did something to your back with one of the blocks, though. :( I just don't know.

I sure hope the doctors will get back to you tomorrow - maybe they were in surgery today, you know, sometimes if they are in surgery, they won't get done until really late at night, then they are so exhausted, they are too tired to go get their messages. It might very well be something like that. So please don't give up hope on the doctors right now. Hopefully tomorrow will be better.

Yours is such a complex case (mine is too :( ) and I know exactly what you mean when you say docs think you are crazy. I had that one pain management doctor tell me I was lying when I said the narcotics hurt my bladder! I mean, why on earth would I lie about that? So, we have some things in common.

I agree that calling 911 might be a good idea. Can they knock you out for awhile like they did before? I hate to think of you hurting this badly. :( There just has to be something!

Blessings,
Lori

[Moonheart]

I haven't been on here long so please forgive me Kara for not being up to date. What is the reason you can't use pain meds and what response happens when you take them?

thanks and I hope you get some help soon.

Moonheart

[Bessie]

Kara,
I agree with the others.....maybe you should call an ambulance to take you to the hospital. I pray they can get you some pain relief somehow. I am so sorry you are having to deal with that horrible pain.

[Annie2]

I wish I had a suggestion that might help. 911 is not a bad option at this point. I, too, will keep you in my thoughts and prayers.
:grouphug: :grouphug: :grouphug:

[Kara29]

I can't take pain meds or any medication really because I have multiple chemical sensitivities that irritate the nerves that cause pain for me. I know it makes no sense but it's true.

When I have to go in for surgery the only pain med I can take is Fentanyl or Dilaudid (Hydromorphone). They also irritate the ex-urethral nerves/pudendal nerves, but I deal with it so that I can have pain relief where the surgery was done.

I wish more than anything that I could have an epidural. The hospitals here won't do it.

I am hoping that the removal of the Interstim that has been in there for 7 years will provide a tiny bit of relief to my back and butt.

I just hope it's done Friday and I don't have to wait long.

Kara

[leelee88]

Kara,
I am so sorry you are still having so much pain..
While reading your post, I can feel your despair..It really breaks my heart...
I will keep praying for you and thinking of you, If you need me im here for you..(((((((((hugs))))))))))))and again I am soooo sorry you are dealing with this.....

[Trishann]

Kara I think we all just want you to get some relief from the pain, we forget the things you can do and can not do. I hope you can have this done Friday too. You will continuely be in my thoughts and prayers.

Sending many hugs, Trishann :pray:

[blondie45]

Sending good thoughts your way and wishing you the best!!!:hi:

[Emma's Mommy]

sorry i han't been online in a few work has been super busy.....i hope your getting some relief!