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In pain and losing hope....

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  • In pain and losing hope....

    I have had IC since 1996 but since that time I have had a head injury and I don't remember the pain associated with flares until THIS flare. Which I have been in since January. I have been to 2 uro's. And on March 15th I had a Hydro/cysto/RMSO and I have been in emense pain since. I was in pain before with 3 trips to the ER due to pain. But, I have been in more pain since but I haven't gone to the ER because what is the point?! My husband is great but today he and his friend were just teasing me but really hurt my feelings in that he has to do most things like cooking, cleaning, kids....all that stuff! I know they were teasing but my feelings were really hurt. So what did I do...I got up and I started the dishes and did laundry and cooked dinner and was hands on with the kids now I am in so much pain I can barely see straight! And going to bed won't help and laying on the couch or sitting here in the comfy computer chair doesn't help. Nothing helps! This is so hard!
    Teresa Swisher

  • #2
    So sorry to hear that you are in so much pain. I'm happy you found us though. I know that if I over do it then I pay for it big time. I'm sure you tried these things but just in case you're in too much pain to think straight. Did you try a heating pad. I work full time and w/o my heating pad I don't think I'd be able to make it through most days. Have you tried pyridium or the over the counter kind, I use AZO or the pharmacy brand. I also up my water intake when I'm in pain to try to flush everything through my bladder. I wish I could think of more right now. Hope you feel better now.

    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus


    • #3
      I am so sorry to hear you are having so much pain! I have days that nothing helps either; I just have to keep changing positions as much as possible. I try doing erlaxation and deep breathing. I find that getting upset during bouts of bad pain just makes it worse! Have you been to see your Doctor lately? I had to go to several Urologist's before I found an IC specialist who would help me with my pain and give me more options. My pain was quite bad after my first hydro and it was rough! I had to find another Doctor shortly after that. It wasn't easy, but was one of the best things I did. Please let us know what happens. Also, have you checked out the patient handbook here? That along with the IC survival guide gives lots of treatment options available now for IC patients. There are quite a few new things available out there that might not have been an option back when you were first diagnosed. I hope you are able to get some relief soon. Please know you are not alone! You do not have to suffer in silence!
      IC; PFD; possible Fibromyalgia; IBS;

      Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

      I've Tried:
      three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
      Currently using:
      Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
      Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
      I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!


      • #4
        Please call your doctor tomorrow and if he won't order anything to help with your pain, ask for a referral to a pain specialist.

        Warm hugs,
        Stay safe

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

        Have you checked the ICN Shop?
        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.

        Patient Help:


        Diet list:

        AUA Guidelines:

        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


        • #5
          I agree with Donna that if this Dr. is not willing to r/x something for the pain, then it is time to see a Pain Specialist. You will need to get a referral, either from your URo or you can ask your GP or GYno, if your URo wont do it. However, dont think that just b/c he/she hasnt given you pain meds that he/she would be oppossed to giving you a referral to a Pain Specialist. After all, several of our Drs who wouldnt r/x pain meds did not mind giving a referral for Pain treatment.

          Obviously the pain is having a huge impact on your life and your quality of life and though there is no cure for IC, it can be managed, and that includes the pain.

          Prior to asking for a referral, there are a few ducks to get in a row. First, it would help your case considerably to keep a pain diary and take it with you when you ask. Chart your pain throughout the day after resting, then after activities, working, sex, etc. (Also, this would be a good place to keep a food diary to help find trigger foods and see if your pain is affected by certain foods. ) Write in it whatever you do that helps the pain (such as heat, meds, ice, resting, etc. and what makes it worse (like activity, sex, etc.) The pain diary will help prove to your Dr. that your pain is not just a hit and miss, occasional thing that knocks you down, but rather something that is impacting your day to day quality of life and functioning. It will also come in handy if you ever file for SSD to prove the same thing.

          It would also be a good idea to bring somone with you to your appt such as your husband or a parent to vouch for your pain. (Not a friend). A husband or parent helps b/c they see the daily impact of the pain on your life and are also impacted by watching you suffer. Others may disagree, but I dont think a friend is as effective of a witness b/c no parent or husband would want to see someone get pain meds that didnt need them. But, most people think that people's friends will just say whatever they are asked to, but that no one's parents or a spouse would want them to be on daily pain meds unless they truly needed them. A witness just adds that extra layer of credibility. It is unfortunate that is sometimes needed, but it always helps.

          When you tell your Dr. that you need pain meds or a referral, make sure to tell them the way the pain is impacting your life. If you work, tell him/her about how much work you have missed, how you are getting in trouble for it there, etc. Tell them how you cant cook and clean and how you have trouble interacting with the kids. Tell them about the impact on your marriage, (that sex causes painful flareups) and your husband. Tell them about the financial impact of lost wages. Tell them about the emotional impact of not being able to do the most basic, normal things because of constant pain. Get it all out!

          I pray that you are helped by your Dr. or referred to a pain clinic. But, if not, do not despair. It took many ICers asking more than one Dr. before they got the referral. But, it sounds like you definately need it.

          I hope that you get help soon. I have been where you are and it scares me that you are there now. But, you can get out of there! Please let us know what happens. I will be worried about you until I hear.

          Many hugs,

          P.S. One more thing, as far as getting a new Uro, if yours has run out of ideas for your treatment, then finding a new one is definately in order. However, if you are looking for a new one for pain, then it would be much better to get to a pain clinic, b/c very few Uros will treat IC pain, and you may have to go to a ton of them, just to find one that will. But, if this one and your other Drs. wont refer you to a pain clinic, then you may have to get a new one for the referral. But, do whatever you have to do to get the referral, b/c it is definately worth it.


          • #6

            I am so sorry to hear that you are in pain. It is difficult to deal with housework and others when you are in pain. I have went in remission for a few months and mine seems to be coming back. All I can say is that God is the one that done it all! I prayed for the right doctor and medicines. It has been a long road, but I finaly got on bladder installations. I did them three times a week for I know at least six months before I could taper off of them. I use lidocaine, sodium bicarbonate, and heparin. It is wondeful!! I also take elmiron. Have you talked to your doctor about taking something for the pain? I took elavil for awhile. It is an antidepressant and nerve pain blocker. It really helps. Everyone is different. This is just what worked for me. I hope you get to feeling better soon.


            • #7
              Hi! Lots of hugs I am so sorry that you are hurting. I agree with the others---let your doctor know how much you are hurting and get a referral to a pain clinic if necessary. The pain diary is a great idea. Wish I had kept one. This is a great site to find empathy when it seems like no one else knows how much pain IC can really cause. Hope today finds you feeling better.



              • #8
                I, too, am sorry that you have to deal with all that pain. But I'm more sorry that your husband and his friend are being so cruel - even if they believe it is in jest. I know that when I am having a terrible flare, when the people who are suppose to care about me are just belittling me by turning my pain into a joke, it just makes it soo much worse. That added stress of that just makes a flare so much more unbareable I know that my husband has been having issues taking me seriously when I say "I hurt, I need to rest." Since I work and go to school full time, he has been picking up my slack for years.. and now with my IC he seems to be doing even more around the house and with our 3 year old daughter. So I can definitely understand his frusteration when I need a little "me time" to try to beat the flare quicker. But his light teasing quickly wasn't so funny to me anymore. It was difficult for me to tell him that it was bothering me, I felt like "What right do I have? He has to deal with this disease too." I finially decided not to let his jerky attitude bother me anymore and I talked to him about it. I told him that I didn't think he took my disease or pain seriously, and that his teasing belittled me . I also said I knew he wasn't doing it intentionally, but none-the-less it hurt. I asked him to come on here and read some of others postings about the pain and how it effects their lives.. so he sees I'm not the only one. I tried to encourage him to join also and post on the family thread, but he has yet to do that (and I wont push him). It's been a few weeks now, and the tension between us has definitely faded. When I get a flare, he will take our daughter in the other room for a little while so I can relax and let my heating pad kick in. I can definitely see a difference since our talk. Maybe you can try doing something like that, talking to your husband (I even got books and asked him to read certain sections), and trying to get him to be more proactive and sympathetic to you doing this rough time. I hope that he listens and becomes more supportive, it's definitely important to have a good support system at home when you have IC (especially during a flare!). And remember, we are always here for you also!
                I am Jenny.
                "Karma is affiliated with the Neopagan law of return or Threefold Law, the idea that the beneficial or harmful effects one has on the world will return to oneself."

                -UTI's and Kidney infections: Since 6 months of age
                -HPV: November 2005
                -Advance high-grade pre-cancer cells found in cervix: January 2006
                -LEEP procedure: January 2006
                -IC: January 2007

                Medications (Began Treatment 3/27/07):
                -Elmiron 100mg 3 x per day
                -Elavil 25 mg
                -Hydroxyzine HCL 10mg
                -Sanctura 20 mg 2 X per day (added 07/24/07)

                Weekly Instillations @ Doctor (Starting 07/31/07 instillations will be performed by self at home - Wish me luck!)
                -20cc Lidocaine 2% Plain
                -2cc Sodium Bicarbonate 8.4%
                -1cc Heparin (10,000 units/cc)


                • #9
                  Hi, you are the very first person that I have messaged on this network. I noticed you are from West Virginia. Did you go to Glenville State College? I saw the "gsc" in your user name. I went to Glenville. I have had IC for the past 3 years. I would love to chat sometime. I will check back later.