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  • I am SO HURT!

    I really need help.I have no strength to fight this... I am so HURT!

    I've been in severe pain from my tailbone, all the way up my spine, and up my neck and shoulders. It feels like a fire and I am not kidding. January 16th was the day that it started after I tried watching American Idol with my Grandparents. I had to lie down on their floor because there was no place to sit. I've not been the same since that night. I can barely move. I can not sit or lay down. I can not lift my arms. I am not able to be disabled. I used to be able to lay down for rest and relief but that is not possible. I've asked every single doctor that is in my life for help. They are all focusing on my Pudendal Nerve Entrapment and seem to be forgetting that I am ONE WHOLE BODY and that all of the parts are connected. I am having so much trouble finding a doctor who won't walk away. My primary care doctor just wants to get rid of me, my pelvic pain doctor says it is not a part of the body that he works on, he didn’t offer where I could go from here and the pain management clinics are just shrugging. I had my Interstim removed because we thought that maybe it could have been infected and causing the fire, but that was not the problem. I’ve had Cat Scans, and MRI. I could not stand the pain of lying on my back for the MRI so they had to put me to sleep for 3 hours. It's not a pinched nerve or broken tailbone. They have no answers...... I can not travel. When I do have to travel, which is OFTEN these days, the driving sends shock waves of pain through my whole body because I have to sit. When I get to the destination, I can't rest the way I used to. No sitting and no lying down. I want to crawl into a hole because I am HELPLESS to help myself and those that I love that are sick around me!!!

    I was supposed to go back home to my Husband Today. My Sister became very ill today and needed help. I am really in no shape to take care of myself. I took care of my Sister all day to make sure she kept on breathing. I sat by her head. My Mom had to work. My Mom has her first Chemotherapy and Radiation consult tomorrow morning. I am taking her to that because my Grandmother is having eye surgery on her cataracts.

    Because of Multiple Chemical Sensitivities, I not able to take most medications. I am only able to take two Medications at this time. These are not sufficient enough to handle the pain. One is Lyrica and the other is Ambien. I keep trying new medications but we have not found one that works for the pain. What bothers me so much is that I can not lie down anymore. I can’t even lay my head down on my pillow because the muscles holding it up burn so badly. My tailbone burns, my neck and shoulders burn. I’ve been using ice and heat, a self inflating, adjustable donut cushion, from Australia and a special coccyx seat from the UK.

    I had to type this by standing at the side of my bed.

    I have so many appointments that are coming up here at my Mom’s for treatment of the Pudendal Nerve Entrapment that can’t be cancelled. I will have to pack and drive myself. It takes me an hour to get to my Mom’s from my home. Then I have to stay for a few days. They are nerve blocks that I have to be put to sleep for each time. Then, from my Parent’s house, I’m supposed to have someone drive me there and pick me up. By the time we get done with all of it, I am here for a week. But I do have to go home to help my Husband with the bills and our pets. I have to go to NH with my Husband for diagnosis and treatment in 2 weeks. But it’s for the urethra (PNE), not the back and neck. I can’t seem to find a doctor right away that will look at me as one whole person.

    How am I supposed to travel this road LITERALLY???? I want to take care of my Mom as she goes through this breast cancer. I am just so sick. I am breathless with the thought of it all………. In May and June, I am also supposed to be in my best friend’s wedding in Long Island (7 hours away from me by car) between all of the pain and Mom’s cancer, and then my Sister’s wedding 4 days after that!!! Not to mention our finances are terrible. My Husband has to turn in his leased car in April, and we may not have the money to get another one. I can’t do any of this without my car. I will be in my car EVERY DAY for the next several months to a year!

    If you have made it this far…..

    If anyone has heard of heard of RSD, Fibromyalgia, Complex Regional Pain Syndrome (CRPS)? or any other thing that may cause an acute burning in the back. Please PM me if you have any information I can bring to any of my Doctors. Burning Fire Pain in my tailbone, neck and shoulders. Also the Pudendal Nerve Entrapment has caused me to lean towards my left side when sitting, standing, and laying. I want to HELP my pain so I can get well enough to help my Mom.

    Since this has been my support group for so many years, I come yet again for support……….

    Thank You for taking the time to listen to my cry for help.

    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at: and

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  • #2
    Kara I wish there was somthing that I was able to do to help you, All i can do is listen & be your shoulder to cry on when you need it!You are one of the strongest women I have ever known , You will get through this & be pain free some day,Your Mom is always in my prayers & she will be ok.I know she is a stong woman as she raised such a amazing women.
    sending you love & hugs Sandra
    "Never Give Up."

    To view pictures of my creative interests and Maine Coon kittens click here:[email protected]/

    My Photobucket Link:


    • #3
      I wish I could help you. All I can say is that I am here for you. Damn! I wish someone could help you with your pain.

      I am so sorry, Kara.
      Meds I take:
      Elmiron, Elavil, Vagifem- for IC
      Albuterol, Flovent, Atrovent- for Asthma and lung problems
      Paxil, Clonazepam- for depression and Anxiety
      Atenolol- for rapid heart rate
      Nexium- for Gerd
      Levothyroxin- for Hypothyroidism
      Lasix, Pottasium- for edema
      Lipitor- for High Cholesterol
      I coated aspirin
      02 at bedtime


      • #4
        I would give up my own health (what little of it I have left) if it would make you feel better right now. I read your post with tears in my eyes and my chin trembling, because you are going through FAR TOO MUCH!!! And through it all, through all your pain and suffering, you are so worried about and want to take care of everyone else in your family!

        I wish I had the magic cure for you!! All I have are some probably lame suggestions to try and help you out. As for the bills, I presume you mean you need to help in getting them paid and out the door. Have you thought about signing up for online banking? Most banks charge nothing or very little to do it, and it has made a world of difference for me, as I handle all finances here at King Corporation (I am the CFO, Lee is the CEO, LOL). Anyway, it really does only take me maybe 5 -10 minutes total a month and no postage to get all the bills paid. So remember, even if your bank charges a small fee, you don't have to pay for stamps. Or, you could look at switching banks. Mine even has a payment history, so if I was out of town without the bill sitting right in front of me, I could just look up when I mailed it last month and how much it was, and just repeat the process.

        Another thing that can help regulate your finances is going on the equal payment plans for your natural gas and power and anyone else that will do it. I started that a couple years ago and it's great, I don't have to faint when the bills come in the winter time, I just pay the same every month...also makes it easier for the above banking thing, as I can just put in a year's worth of payments at one time and the bank will mail them each month without me doing anything.

        As for the car, that's a tough one. Is there anyone in your family that by chance has an extra car, even if it's a semi-clunker? All you need right now is something reliable to get you from A to B. If not, have you considered purchasing out the lease? Sometimes once you do that, the payments are cheaper than the lease payment was since you can stretch them out over 4 or 5 more years. This is a less advisable option, but sometimes we have to do things we don't want because, well, we have to. Do you have any room on a credit card that you could buy something older but in decent shape for just a few thousand dollars? It would only increase your monthly payment by a small amount. Another option if your husband has it, is a 401 (k) loan. Or, if you have a retirement account from any time previously, yes, you'll pay penalties, but take the money out anyway, if you need it, you need it!

        Okay, moving've got to concentrate on yourself right now. I know that your mom is sick and there's a lot of other stuff going on in your family. And I know you want to be there, and sometimes you HAVE to be there because you are the only on that can...but other than that, you really have got to try and concentrate on getting your health back. You can't help everyone else if you are so sick yourself. Don't worry about the weddings right now...they are a few months off. Just put them out of your mind for right now, and if anyone asks you for help in the planning, politely decline. I'm sure they will understand.

        I wish I had better doctor advice for you. All I can say is try to remain positive, try to do as much research as you can online to find doctors in or around your area. If you have to get difficult with your other doctors, well, get difficult and tell them you NEED to find someone that can help you. You NEED some meds to give you at least some relief. If you haven't already, appeal to them on a personal level..."what if your wife or your daughter felt like this? Would you just push her out the door with no help, no plan, no attempt at a solution??"

        You are definitely one of the very strongest people I've ever known. You WILL get through this. We WILL be here for you at any time, day or night. Continue to pray and don't hesitate to lean on some of your family members as well.

        I have been in situations before where money was VERY tight, and I'm pretty good at figuring out ways to make things if you want any other tips, feel free to PM me anytime and I will give you all the tips and tricks that I have.

        I feel for you Kara, and I am thinking about and praying for you.


        "A heart is not judged by how much you love; but by how much you are loved by others."
        ~ The Wizard of Oz

        "If I ever go looking for my heart's desire again, I won't look any further than my own
        back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


        • #5

          I wish so badly that there was something I could do. I really wish we lived closer so that I could help you get back and forth to your appointments so you wouldn't have to do it yourself. It is really upsetting to me that none of your doctors want to help you - really makes me wonder why they are doctors in the first place but enough of that.

          I am here when you want to talk - I believe you have my phone number still - if not let me know. While I don't have any answers for you I can just listen.

          You are such a selfless individual. While your health is not in great condition you are taking care of those closest to you and making sure they are okay. While that is just a part of who you are - it speaks volumes about your heart.

          I will continue to pray for you and your family.

          Love and hugs,


          • #6
            Kara, I wish so much I could take your pain away, and help you. I wish I had answers for you. I wish I knew of an operation or a medicine that would take this horrible pain away and let you live a good life. And then on top of that, you have all the other stresses and worries. It's not fair.

            I'm so sorry. I feel so helpless to help you. All I can do is keep praying for you. I know God hears our prayers.



            • #7

              As I was reading your post I kept thinking "oh my gosh, this sounds exactly like an article I read in the March issue of Women's Day yesterday". Research it on the internet and call your pain management specialist with the info. Have you tried accupuncture? From reading all of your prior posts, you seem to have tried all of the conventional medical options. The woman in the story I read suffered terribly for years and it started in one body area and eventually spread to her entire body. She was in tremendous burning pain for years and doctor hopped until someone finally diagnosed it. She is much better now after receiving proper treatment. I have fibromyalgia and your symptoms are way too severe for it to be that (in my opinion). Good luck!!!!



              • #8
                'The will of God will never take you where the Grace of God will not protect you.'


                • #9
                  Kara...I don't know how you feel about Chiropractic, but it might be worth making an appointment with a Chiropractor for a consult to see if they can give you any relief. The reason I even suggest this is that you said this began when you laid on the floor to watch TV. They will take the time to listen to you while you describe the pain. They usually want to take full body x-rays to see what is going on before they do anything.

                  Hon...I am so sorry you are going through this and I am praying that you will get answers and help very soon.

                  Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                  Where I can be found most days.

                  Link to the ICN Patient Handbook:

                  Link to the IC Diet:

                  IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


                  • #10
                    It might help if you prioritize the things you feel you must do. First of all, you need to take care of your own health --- a close second is being there for your mother. Hopefully her chemo will not knock her for a loop. My neighbor had chemotherapy for her breast cancer and it just made her a little tired. By the way, she's probably my best friend and she's survived for over 15 years now.

                    Once you get that list done, ask yourself if someone else can take one or two items from the list and take care of them. Hopefully your husband can take care of the pets, if needed --- and he could write the checks and pay the bills (my Terry does that job because I hate it so much.). And, even though it may make you sad, you should really think about skipping that distant wedding. Remember --- your health is important not only to you, but to your family and to all of your friends.

                    If the nerve entrapment is making you walk with your back skewed, it could very well be causing your other back problems. Hopefully you will get that one resolved soon.

                    Sending gentle hugs,
                    Stay safe

                    Elmiron Eye Disease Information Center -
                    Elmiron Eye Disease Fact Sheet (Downloadable) -

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                    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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                    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                    Anyone who says something is foolproof hasn't met a determined fool


                    • #11
                      I agree with Donna's advice. Maybe writing everything down will help to see things more clearly. It has to be so overwhelming right now. Maybe writing everything down will help prioritize and organize a plan of action. I am so in awe of your concern for others when you are dealing with such issues yourself. You are a remarkable person.


                      • #12

                        OMG, I'm so sorry you are feeling this bad, you know I can somewhat relate to what you are going through. I'm so sorry your pain is getting worse, I cried reading your post...

                        Re: RSD, I've heard of it, my therapist (who's last day is tomorrow, Friday for the group) has it. She explained it that after an accident she had, her nervous system was severed. Her pain was throughout her whole body, though she mentioned that her right arm would be in severe pain, the nerves so messed up that it would turn bright red. Somehow, she has gotten through this. She was a teacher, and has gone to school to now be a therapist due to her disabling condition. There are still days that she cannot work, or has to wear a splint. She did say she was completely "out of commission" for a while, but through time she has learned to deal. She said it took her about 3 years to even be able to begin to deal with the disabling symptoms. I know 3 years is a lifetime to you right now!!! She did say she found accupuncture to be very helpful, and like you has tried tons of meds to no avail. I would suggest doing as much reasearch as you can, like you did with IC. Research, reasearch, reasearch.....knowledge is power.

                        One more thing, she recommended a website that a friend of her's runs. I went on and wasn't able to get in (they weren't accepting new members), but she's gonna tell him to let me in, if and when I get in I'll try to get you in too.... no hopefully maybe you can get at least a small laugh out of the name of the's!!! I'll let you know what I think about it when I get in.

                        My thoughts and prayers are with you girl, I know this is a very trying time for you. Please know that I'm here for you anytime.....a phone call away. Please take care of yourself and I'll talk to you soon. Love and Hugs, Chris
                        Thank You all so much to everyone here for all your sharing, caring and support!
                        < My "Bear"
                        Started herbal teas 6/2/06 Marshmallow root, comfrey root, and catnip. 6/25/06 added Mullein Leaf Powder to tea.
                        IC Diet
                        Hydroxyzine 50 or 100mg at night (Is restarted)
                        Zoloft 100mg 4/8/07 (Is restarted)
                        Klonopin 1/2 mg 4 X Day (started 3/17/07)
                        Past Treatments: Amitriptyline, Neurontin, Hytrin, Heparin instills (was Dc'd after 5 weekly tx's due to severe urethritis), Superior hypogastric plexus block, E-stim, Elmiron instills (started 4/18/06-Dc'd 5/30/06 due to severe urethritis/infection requiring foley cath @ home 4 days), Oxycontin (oxycodone) (4/18/06)-pain (Dc'd 5/31/06), Levsin S/L (hyoscyamine) (3/17/06)-antispasmotic (Dc'd 5/31/06), Elmiron (1/24/06)-(Dc'd 6/25/06), Prelief, Zanaflex 4mg for PFD (Dc'd 10/1/06), CystaQ 1 in am & 1 in pm with food(started 5/12/06-increased to 2 in am & 1 in pm 9/20/06---Dc'd 10/18/06), Lyrica (started 10/26/06 up to 600 mg-Dc'd 12/4/06 due to urinary retention), Vicodin (hydrocodone) ES PRN for pain (Dc'd 1/4/07); Cymbalta 30mg (start 1/17/07) up to 60mg in am (1/26/07) (D/c'd 3/17/07); Ativan 1mg(Lorazepam)- PRN Anxiety (changed to Klonopin 1/2mg 4Xday 3/17/07); Pyridium (phenazopyridine) PRN-bladder analgesic; MSM (6/12/06) 1000mg after breakfast & dinner (Dc'd 3/15/07); Acidophilus (Natrol) 100mg. 1 capsule 1/2 hour before breakfast (5/20/06) (Dc'd 3/17/07)

                        Added BACK in - Atarax (hydroxyzine) (started 4/6/06 Dc'd 5/31/06) Restart 50mg at night 8/18/06, up to 100mg at night 1/4/07. Zoloft 100mg-Depression (Dc'd 7/25/06) Restart 4/8/07) 100mg.
                        Dx'd: Dec 05 (Positive PST in November and positive cystoscopy in Dec) Symptoms: Pain, frequency, urgency & retention

                        My Myspace page -


                        • #13
                          Dear Kara,

                          I am so sorry that you are in such pain. I wish I could take it all away too. Like Donna, I cant help but think that it is somehow related to the PNE. I really hope whatever it is, that they figure it out soon, or that you wake up one day and it is gone.

                          I also agree that it is going to be necessary to prioritiize things, and the way Donna prioritized them makes sense. You must take care of yourself first, before you will be any use helping anyone else.

                          I love Claudia's ideas, particularly about the online banking. (This is something that Allen could do, and then, you could be able to see it whenever you are online, to see what bills he paid, or check your balance.) This would be an especially good thing for you two, since your time has been/will be so divided between your parents and home.

                          I hope that you start feeling better soon. It kills me to know that you are hurting so bad!



                          • #14
                            The reason I love Traditional Chinese Medicine is that they treat the body as a whole -not just your bladder or your headaches (or whatever) but they look at the total body and, when someone is sick or in pain, they say the body is out of balance and their goal is to then get it BACK in balance.
                            They don't even want you to come in and say "I have this disease" or " I have a dx of that" - all you do is start at square 1 - describe your symptoms - answer their questions about them, let them take your pulses, look at your tongue and then lie down for the specific treatment that will get YOU back in balance - its custom designed for YOU and no one else.
                            The herbs will support and aid the re-balancing of your body and health but they aren't mandatory - you can get the acupuncture alone but both work best for most people.
                            Just be sure to go to a licensed practitioner of TCM. Good luck.


                            • #15

                              *Diagnosed with severe IC in 2004
                              *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                              *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                              *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                              **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.