I am SHOCKED! Wish me Luck!

[Kara29]

http://www.ic-network.com/images/courageaward.jpg

(Kara, of the thousands of patients on this board, you have had one of the most difficult journies of all and yet, despite all of that, you still focus on helping others. Wow, you definitely deserve the courage award for this new development! - Jill )

Due to the urgency feeling in my urethra that has never gone away with anything I've tried over 9 years which has caused me to be fully disabled, I was finally diagnosed with Pudendal Nerve Entrapment last month. I am going to drive 8 hours to NH to have a more accurate test for Pudendal Nerve Entrapment. This test was designed to find out how much of the nerve is trapped and where. It's an EMG of the Urethra. They will be sticking several needles into that area as well as electric shocks to measure the nerve conduction. I will be fully awake for this! There are only 3 PNE Surgeons that do this specific test in the US. Otherwise I'd have to go to France. Yesterday, I had an EMG done on my back, neck, arm, hand, leg, and foot. I was so in shock due to the severe pain the needles caused, that I could not drive home. After I got home, I cried for hours. I wish I was stronger!!! I can hardly take knowing that this test will be perfomed on my urethra, vagina, rectum and the "other" most private part of my female body..... It was one of the most painful tests I've ever had to endure, almost as bad as the urethral dilatations that they did while fully awake several years back. I am so scared about this that I was going to back out. They can not use any anesthetic because they need to get an accutrate measurement of how the nerves and muscles respond to touch. They will be moving the needed around in the nerves that they test. I've been waiting for so long to figure out what has happened so that I can move on with life. The Doctor told me last night that after all of the stuff I've been through, that he thinks I will do great.........I'm still scared. I'm Human.

For the past two months I've been trying to find out what is wrong with my tailbone and why I can not sit down any longer. This Doctor told me last night that the fire that I've been having in my tailbone is caused from the Pudendal Nerve Entrapment. He thought he had mentioned this to me before. I wish that were the case!! My test is to be followed by 3 PNE nerve blocks, March 19th, 27th, and April 2nd. For each nerve block, they have to put me to sleep. This is in hopes to try to deactivate the nerve over time. They also have me putting a compounded, buffered lidocane cream on the urethral area every 2 hours indefinitely. This is also in hopes to deactivate the nerve over time. The financial strain of all of this is putting us in a very upsetting position. If these things do not work, they will do a very risky surgery to Decompress the Nerve.

It's been a long 9 years. I hope they come up with something they can work with.

Thanks for the support to all of you who've given it to me over the years! Many Hugs to each and every one of you!


This journey starts now......wish me luck! I am going to NEED it!

Kara

[lnseagraves]

WOW, I will certainly keep you in my prayers. I cant even imagine.

[ICLori]

I will keep you in my prayers, Kara!

It's normal to be scared (I'm sorry that other test hurt so much) but I'm really excited for you because I think this could be it, this could be the thing that gives you your life back!

I had a percutaneous stimulation test done for the Bion, in that same area you are talking about now. They gave me a shot of anesthetic, in that area, which felt kind of like when you get a shot at the dentist. It stung for a couple of seconds, and then I was fine. Then I was all numb, and the needle went in, and I didn't feel it.

The test itself didn't hurt except for one part where they were moving the needle in and out with the stim set on high - they aren't supposed to do that, because they hit all kinds of nerves - if they start doing that with you, tell them to turn the stim down! Otherwise, it was a painless (but embarrassing) test.

Keeping my fingers crossed for you - things will be okay! :)

Blessings,
Lori
P.S. You aren't weak, you are one of the strongest women I know of!

[lorizing]

Hi Kara,
Is there a reason they can't sedate you somehow? Maybe conscious sedation? I am excited for you that you have an answer but am thinking there must be a way to do these tests without you being awake...no??
I will keep you in my prayers...
Lori

[curlette]

:pray: Kara, my poor, poor thing. I have been suffering the pain and disabilities of IC for 14 years, but my history is nothing compared to what you have had to endure. I had no idea that it could all come to this. Every question I have ever asked my Urologist about IC, he answers with "I don't know", or "We don't know yet" and I've always been very confused about what is all really involved with this disease. After reading your story tonight, my heart goes out to you and your family. I hope that you can find joy, in spite of sorrow, light in the darkness and God's Angels with you, always. I will include you in my prayers every night. You are not alone on this journey, Sweetie, we're all there for you, so you just have to reach out. Lots of love and prayers and blessings,
Curlette
:angel:

[leelee88]

Kara, I will be right here for you through this journey:smile tee

[Kara29]

They can not use any anesthetics, local, general, and or twilight because they have to have a very accurate measurement of how the nerves and muscles respond to the needles and electricity as well as touch. They will be moving the needles around in the nerves that they test. :( :( :(

"I think I can. I think I can..."

[Roxie2007]

Kara, Good luck to you on your tests. They sound horrid. It sounds like you are a very strong person though and the upcoming tests won't be easy but at least you are finding out what the problem is. That will mean a lot for your peace of mind.....at least the end of pain might be near. You will be in my thoughts......Roxie

[ICNDonna]

:grouphug:

Donna

[littlemyrn]

:grouphug: You know we will all be thinking of through all of this. As well, I can not imagine. Good Luck and just try to be in your most happiest place when the test is being done. When ever something terrible is being done to my body or embarrassing, I always think where I am most happy, vacation spot, seeing my kids on Christmas morning, etc. It does help some.

[Trishann]

Oh Kara I hope so much this will be the thing that will work for you. I love the little saying you said, "I think I can, I think I can. I can't believe they finally finding out what is causing you all the problems. Now they know hopefully you can get relief.

Sending hugs, Trishann :pray:

[Billsbaby]

thank god it seems like you may have an end in sight from all this pain.you are a very strong woman,i know you can do this.good luck kara,i will be thinking of you.:pray:

[sandramac]

I know you can! I know you can! I know you can!
love you! Sandra & family!:cat: :cat: :cat:

[tigger_gal]

Kara I am sorry that you ent thru such a painfuil test and have another one coming. :pray: :grouphug:

[Bessie]

Kara,
I am so sorry you have to go through all of this but if anyone is strong enough to do it.....you are. If I looked in the dictionary under the words courage, stength, determination, hope, compassionate, caring, kind, and giving, I would find your name listed there.

Just know that we are all there for you, pulling for you, and sending many, many prayers your way :pray: :pray: :pray:

[Mel53H]

Oh Kara! I dont blame you for being scared. Who wouldn't? You will be in my thoughts and prayers.

:pray: :grouphug:

Mel

[aprilmae]

Kara,

Thinking of you and praying for you every step of the way!

April

[verdicries]

Ooooh, just thinking about your test scares ME, & I'm not the one going for it!!! GOOD LUCK, you can do this. I've been reading your bladder removal stories and...wow. That's all I can say is WOW.

BIIIIIIIIIIG hugs.

:grouphug:

[SharonA]

Kara...You know my thoughts are with you and I am praying that this will finially be an answer for you. :kissing:

[blackcat25]

Hi Kara,
I have had the urethral EMG test myself, albeit for different reasons. I remember how scared I was before it, but to be honest the thought of what is being done is worse than the actual sensation.
OK i won't pretend that it doesn't hurt, but it is transient, and if it can help you get a diagnosis at last, then it will be worth it.
Feel free to PM me if you want more information.
From what I have read of your situation you sound like an amazingly strong woman, and if I can get through this test, you definitely can!!
Hugs,
Sarah

[ihurttoo]

Kara,

The test sounds horrific!! I hope that it goes by very fast for you and finally delivers the answers you have sought for so long. I hate that they cant do it under some sort of anesthesia, but it makes sense. But, I know you will get thru it somehow, just like you have gotten thru everything else.

Hugs,
Amy

[mary124]

Kara: My thoughts are with you. You are a VERY STRONG WOMAN, remember that!! :grouphug: :pray:

[KathrynPInk]

Dear, Dear Kara,

You have gone through a life time's worth of pain and frightening experiences with IC! I am so very sorry you must go through this. I pray that you will be protected somehow from this pain, somehow. I know miracles can happen. I know that we all are praying and hoping one for you.
I hope this pain and the procedure will one day, just be a chapter in your brave life's book of hope and healing. And the rest of your life's book will be of better days, many better days. You need to heal, girl. I know you are so loved and it is obvious why...so we just pray the test will be quicker than you can imagine and the answer will be a teatment that can be handled with less pain.
I admire you and keep you in my heart and hope that you will be healed. I am bad to ask, "why?" but we do not have these answers.
Please know that many, many people are pulling for you to get well, and get through this hard time.

Bless your heart,
Katheryn

[Sarojini]

:grouphug: :grouphug:

[KathrynPInk]

Jen, (I like the group hug!)
A question: has UNC- TV done anything on IC? I was also thinking of a magazine called Metro magazine...(it is Raleigh- Durham- Chapel Hill based..I think, but maybe an interview with someone who has suffered and been through many treatments could make an impact. Are you willing to be interviewed?I was just wondering, in case someone affiliated with either of these two places would want to do a story. Do you know off hand about how many people are [I]diagnosed with IC now? I know that the numbers have changed in the last 10 years. It just seems that this is an under-reported illness and yet, it has actually been accepted by the old cranky UROs of the past, are admitting it is real. The first 4-5 uros I saw were of the old school, not believing it to be an illness. Thank God for Greensboro's Urologist who has brought light even to this area of NC.
Katheryn

[SandyRN]

I've had an EMG done on my legs and arms, and it was very painful too. I really think that there should be no problem with something like valium that would just calm you down, but not change the outcome of the test. You would still be awake and alert.

I think you're very brave to have this done. I know it's been a long road for you and I hope some answers come of it.

Let us know how things go.

Sandy

[humpieumpumkin]

Kara,
I hope this is a miracle for you. You are strong you know. God doesn't give us more than we can handle, although I must he thinks your super woman! :smile tee You have been through so much already, lets hope this gets you straighted out.

Erika:angel:

[IC SARAH-CPP]

Kara,
You are so strong, stronger than almost anyone i know. I know you can get through this. Please tell me they are going to give you pain medicine for afterwards!! I am sending the biggest hugs your way. I dont blame you one little bit for being scared, I think that is normal. Try to picture a beautiful beach and the calm ocean while they are doing it. Lets just hope this is going to be the answer you seek.
Love Sarah

[Kara29]

Thank you everyone! You are all so sweet, kind, and thoughtful. We leave on Monday. I think that I will be so comforted to think of what you all wrote. I will think of the beach that I will be able to go to some day when I get better. Great Ideas. I cherish all of you and so glad to know you!

Love and Hugs!

Kara

[ICLori]

Kara, I'm so glad you got the courage award, because I think you have more courage than any other person I have ever met in my life! You deserve this award.

I am praying you will have a pain free life soon.

Blessings,
Lori

[Kara29]

OMG! I didn't see the award! THANK YOU JILL!!!!!!!!

I am blushing. :smile tee :smile tee

Kara

[SandyRN]

I'm glad you got this award Kara....You have been through so much and definately deserve it!

Hugs, Sandy

[IC SARAH-CPP]

I agree 100% with this award too!! You are so very courageous Kara. Most of all because you dont give up! I know how easy it is to want to give up when things are so hard and it feels like you have tried everything. But you find the courage to keep going. I know you will make it through this.
Oh and when you are well enough to travel, you are more than welcome to come stay with me in Hawaii! :)
Love Sarah

[Kara29]

Sarah,

I would love to come to Hawaii!!!! I'm on my way as soon as I get some relief! That will be wonderful!


If anyone goes onto a show to share IC Stories, I'd be willing to share mine as well. I'd also be interested in sharing my story to anyone outside of the ICN that will listen. I don't want any more IC folks to have to go through the things that I have. I feel that the Doctors need much more education on IC. Especially Primary Care Doctors and OBGYN's. It would stop so many people from having to go all over the place for diagnosis and adequate treatment.

Kara

[Billsbaby]

wow kara i was reading about all the awards,and when i saw the courage award the first person i thought of was you,but i did not know they actually did the award!!! you absolutely deserve this.you are the most couragious person i have ever met(well kinda met,lol).good luck with everything.jamie

[Judith56]

Good luck with your test. I also had the EMG done on my legs and yes it has to rank way up there as far extremely painful in teh way of tests. I will keep you in my thoughts. Judith

[CarolinTexas]

Congrats on your medal Kara!

I had an emg in 2005 - the shock and the needles on my legs and hips. I stayed in the bathtub for about three days and had to use constant moist heat while out of it.

It is incredibly tramautic. More so, since you already know what it is like.

However, you've been through so much, you can do it! Make a plan for what to do when you get home or as soon as you escape from the neurologist's office. I wonder if lidocaine patches or cream would help offset those muscle cramps?

Best of luck!
Carol

[maryla]

Yes, I agree with the others, You do deserve the award. You certainly have set the path for many of us here.

I have to have an EMG also soon and my brain fluild tested. Which I heard is horrible too, and they can't put you to sleep.

I'm scared too! We would'nt be human if we weren't.

I'm sending hugs and prayers your way, maybe something can be done and you will be pain free at last,

:pray: :pray: :pray: :grouphug: :grouphug: :grouphug:

And an angel to watch over you.......:angel:

[SharonA]

Kara...Congratulations on the Courage Award. It seems that, like the lion in the Wizard of Oz, you have always been courageous. I was glad to see the graphic saying that you have been recognized for your courage. :kissing:

[Mel53H]

:woohoo: Congrats to you for the courage award. You certainly deserve it!!

Mel

[Kara29]

Thank you all for the congrats!

:smile tee :smile tee :smile tee

Kara

[sandramac]

:dance: :kiss: :grouphug: congratts! kara !
love :woohoo: :cat: :cat: :cat: Sandra

[sweetangel2080]

good luck with the testing, you are sooo brave as it sounds like it will be a great hurdle. i hope thye will keep you there afterwards to control the pain or book a hotel to stay overnight if needed to take pain meds and ice or heat to try and calm the area down if needed

i guess this hurdle may be needed to get to the nerve treatment and hopefully that will eb the magic bullet. i have read a lot of your posts but not replied all the time, as you are sooo brave to go throught what you have and still be optimistic. i really hope you can get relief.

your posts give optimism and hope to others who have more severe IC that there are lots of options out there even though it may seem like everything has been tried. even after surgery, there are options out there
even though i have been housebound with IC for half a year now,it is nothing compared to others. I am hoping that the research that dry keay is it doing on the apf and the drug company that has brought that trial will find the cause of IC so we can be closer to a cure if not for us, but kids or others!

[Kara29]

I'm on my way!

I will be keeping all of your thoughts and prayers with me.

Thank you all so much.

Kara:smile tee

[Mel53H]

:smile tee :grouphug: Take care.

[Emma's Mommy]

Kara you'rs such a strong person i really give you alot of props for everything you have been through.

if you need ANYTHING when you get back to Syracuse don't be scared to ask!

I make a mean chicken parm and can call for take out with the best of them :smile tee


i hope your test goes well and it isn't too painful.....and don't worry i know you can do this!

[IC SARAH-CPP]

Oh Kara good luck! I am sending big hugs and cant wait to find out how it goes. Just think of your lovely Hawaii beach!
love Sarah

[Emma's Mommy]

can't wait to hear how it went!

[Texas Baby]

kara,
I am praying for you. I feel like the doc will come up with a solution this time! I pray that your trip will be worth it! You are such an encouragement to everyone! You go girl!
Blessings & Hugs!
Eva:grouphug:

[Kara29]

With all of your prayers and support, I made it through the EMG but it's not something I ever want to have to go again.

We are back from New Hampshire. The Doctor was something special, VERY compassionate and understanding! He took more time with us than any doctor in 9 years has given to my care. He talked with us for almost 2 hours. He answered all of our questions and concerns. We were able to communicate easily and honestly with him. There are no easy answers with what is going on with me. The EMG was inconclusive and may be an indicator of just how entrapped or damaged the Pudendal Nerve Is. There is no way to have a certain answer with any PNE case. The physical exam that he did revealed some classic signs and symptoms of PNE and also some unusual findings. He would like me to continue with my treatments in Rochester, NY. That includes 3 more Pudendal nerve blocks. He wants me to find a Pelvic Floor Therapist in my area to help with some Myofascial Pain Release of my Pelvic Muscles. They are stuck and barely move. He wants me to continue communicating what is happening with each treatment as it will be very useful to know what to do moving forward.

He is suggesting a Vestibulectomy and Pudendal Nerve Decompression Surgery if I don't get any relief from my upcoming treatments.

Despite the pain, we were very happy with our trip! I will continue to move forward knowing that there is help!

Love and Hugs to you ALL!

Trip to PNE Specialist, New Hampshire 2007

http://i142.photobucket.com/albums/r115/Karalynnree/th_NewHampshire.jpg (http://i142.photobucket.com/albums/r115/Karalynnree/NewHampshire.jpg)

Kara

[sandramac]

Kara Im so glad your home. Your new picture is beautiful. You look stunning ! i've been thinking of you & your Mom , How's she doing? call you later !
Love & Hugs Sandra:cat: :cat: :cat:

[Emma's Mommy]

im glad everything went well!

[SharonA]

Glad to hear from you. You have been on my mind a lot over the last couple of days. (((HUGS)))

[Mel53H]

Hey! Glad your back and that part is over with!

I like your hair in the new picture. Did you have some highlights put in it? It looks nice.:)

[Trishann]

Hey Kara just been thinking about you alot. I am happy to know that there is hope and you will have someone working with you.
Just wanting to send you hugs, Trishann

[ihurttoo]

Glad to see you made it back in one piece! I am so glad he was kind and compassionate. Glad to hear he had some ideas for things to help you. I hope things get better without the surgery, but if you do have the vestibulectomy, let me know if you have any questions for that part. I will be glad to answer anything I can.

Love and hugs,
Amy

[redfearn]

KARA--

I'm so sorry that you are going through such terrible situations right now. How is your Mother? I'm so worried about you, but I am relieved that SOMEONE finally diagnosed you with this terrible pain you've been having.....I wish I could be there with you while you undergo this horrible test!!!:cussing:

I also want to say how much you deserved this award!!!! I have yet to find any material via books, internet, and Doctor's that have helped me out as much as you have. You've been so there for me during my bladder removal and Indiana Pouch. Even when you are in such terrible Pain, you always put my needs and questions first. I cannot say enough to Thank You. God certainly Created a Wonderful Person!!!!

I'm going to try to call you----

Love and Huge, Huge Hugs!!!!!!:pray:

Laura Redfearn

[Bessie]

So glad everything went o.k.
Will keep you in my prayers :pray: :pray: :pray:

[MakinIT]

Wow, Kara, my toes curled and rear clenched when I was reading the description of what you had to go through. My own anxieties with medical procedures made my stomach flip. I am glad you had a compassionate doc. Sometimes these specialists are so....jerkish. the further they get from the person in the patient, the more they view the patient as simply a problem to be solved. (I get so frustrated with that)
You are very courageous, and I'm not trying sound trite. I get so down and angry with my own issues, try to infuse humor but sometimes nothing works. You are doing what you need to do to get life on track!!! I admire you. My own experience with trying to implant a spinal nerve stimulator was so traumatic I struggle with anything else.
I hope this helps you!!!

Tracey