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  • #46
    Hi everyone,
    I am also a 24/7er. Days are usually easier for me but mostly I have gotten used to the pain. I have tried the cysto, Elmiron, Elavil,Neurontin, etc. and also found the only thing that helps is pain medication. I am meeting with a new doctor tomorrow since my old one decided he would not prescribe any more pain medication for fear if becoming an addict. I am trying to stay upbeat but it is hard when they want to take the only thing that helps. At night is so bad for some reason. My pain gets so that I go into the other room and cry. I can't remember the last solid nights sleep. It has been years. I am hopeful that there are treatments I haven't found yet, and am trying the diet. Hopefully it will help. Good luck to all of you. Wendy


    • #47
      Hi all,
      I know this is an old thread but I am new here and wanted to add my experience to it.
      I am not a 24/7 person all the time. Sometimes my pain is 24/7 for like a week at a time, then it will quite down for a while and give me a break. I feel so sorry for all those who have 24/7 pain - every single day.
      I always try to explain my disease to people and they never understand. To them it is like - duh - a bladder - how does that cause so much pain. However, a few of my girlfriends have had bladder infections and I tell them - it is like the worst day of a bladder infection - but all the time!!! That usually shuts them up.
      I take vicodin pretty much every day. My doctor and I are always going back and forth on this because I don't like to take it if I don't have pain, but she says that it is easier to control if you don't let it get so bad. SO, for now I will try to take 1 - 5 mg vicodin every six hours.
      It is so hard for me to work. I have my degree in financial analysis and work as a corporate account manager for a large construction company. I need to have an excellent memory and think fast- so these meds really make that hard. However, I have always said that pain is the biggest distraction I can think of!!
      So that is my situation with the 24/7 pain.
      Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!


      • #48
        Terrible pain in vulva area

        I was wondering if any women out there have tried lidacane(sp?) for their pain? I have stabbing pain which seems to come from the opening to my urethra, and sometimes it even feels like there is clitoral pain as well (or maybe that's just because there are so many nerve endings in the clitoris, perhaps it's referred pain?? I don't know. But I am very limited as to what oral meds I can take due to chronic renal failure from chemotherapy. I'm only allowed to take tylenol which does nothing, really.

        I read about lidocane in the IC survivors guide and I was wondering how much I can use, if it's harmful, will it burn, etc... I don't want to make the problem worse than it already is...Thanks-


        • #49
          pain everyday

          I to am in pain all the time. My I.C. started in july 2004 as a bladder infection that didn't clear up. Saw the uro in Octber and he didn't know what was going on with me. No RX,s for any meds at that time, but he booked me for a cysto in Nov, I had that done(still suffering) and he said my bladder looked fine but my urethra was very inflamed. No Kidding. At that point I was handed a RX for Ditropan XL no instructions on how to use it or why I was given this. My next appt in Dec I explained I was still in terrible burning pain and he gave me Elmiron. I wait in his waiting room for 1/2 hour and when I do get to see him he spends all of 3 minutes talking to me. He never brings in my chart, I never see him writing anything about what we discuss, I guess he has a great memory or something. So I ask the receptionist what do I do because by this time he is gone on to his next patient. I book for January. And again I saw him this Tuesday and the same thing a 3 minute chat I ask him if I can try Atarax and he totally ignores me. I told him that my GP had given me a RX for Pyridium and he said if I wanted that I would have to call her. I couldn't believe it. He said it sounds like you've been doing alot of research on IC, well what else have I got to do. I came out and asked him what exactly are you treating me for and he said IC that was the end of my appointment the only thing he gave me was more Elmiron. He said if this didn't start working within the first 3 months then it probably wasn't going to help me!! So I'm back to square one. I'll have to go back to my GP and ask to see another uro. I am going to see a gynecologist in May but I don't think I can stand this burning pain much longer. I have been following the IC diet for two weeks now and I think that it does help somewhat with my IC belly. Am looking forward to receiving my Prelief from the USA soon. This is so discouraging its hard to keep a positive outlook when you feel that someone who should be helping just doesn't care. Oh he also said if I wanted I stop the Elmiron and he would do DMSO. I have got 5 weeks of Elmiron in me so why wouldn't I want to keep trying this. This is so frustrating.


          • #50
            24/7/365 going on 7 years now. I've had Pain started on and off for maybe 3 months, thought was a UTI but test results came back, no. Then one day I woke up PAIN and I've had everyday since.
            Jen ...


            • #51
              I will also join the group as I am in pain 24/7 regardless of how much pain meds I take. The pain meds allow me to keep the pain levels down but for the last 8 years since I had a surgery that left me in agonizing bladder pain I have had some pain always.
              Pain meds have been the only thing that I have done that have relieved the pain at all ( and I have done every treatment out there except Botox and Cystistat, which I am considering starting - I hate the idea of using catheters again even if I do use child size ones the pain is close to unbearable)
              My pain meds: 75mcg Duragesic pain patch, 20 mg per ml of liquid morphine for breakthrough pain which I take everyday of approx.10-15ml which is a lot of Morphine and then Belladonna & Opium suppositories if I have bladder spasms.


              • #52
                Greetings to all the 24/7'ers,old and new.I have been given lidocaine,but it is only for the topical pain,and quite temporary I was told.As for having a URO who is insensitive,I'm sure a a lot of us have been in that situation as well.My Uro really doesn't even really see me any more,he has turned me over to a pain doc.Says he can't do anything else to help me.We all just have to keep pushing on and trying not to give up.Everybody hang in there! Melissa


                • #53

                  Melissa, If you don't mind my asking, how much lidocane do you use for the pain, and what is the strength? I have a tube here in the house, I believe it's 2%. I've been afraid to try it because I'm afraid it will burn. I don't want to make things worse than they already are! Thanks for your help-


                  • #54
                    My lidocaine is 2% as well.But I honestly,don't really use it,because the nurse says it will really numb you and you have to be careful.She suggested I use it during intercourse only,which doesn't make much sense to me,so it just sits on the shelf.


                    • #55

                      HI! I too am a 24/7 pain sufferer. My MD is refusing to continue calling my breakthough medications and has me on 40mg of Oxycontin in the a.m. and the p.m. and it putting me on Neurontin 3x a day. I'm starting out slow, so still in the 1 pill every evening stage and am slowing working my way up. I really don't see any difference in pain but it's only the 2nd week - have to keep an open mind I guess. I have not really had any remission periods, lost my job to IC in July due to pain, frequency and too many days missed of work. They let me go right before I was eligible for FMLA leave time. I now have applied for social security disability, I was supposed to hear a decision this month but now they've forwarded my case to Kansas City and my case person said it wouldn't be til the end of February now. I'm sure they'll deny me, most of the time they do. If they do deny me I have to do something for money whether it's babysit at home or something and with my level of pain I can't imagine trying to work with all the pain that I have. It's gonna be difficult but we have to do something financially because we're gonna end up loosing everything at this rate. Please keep my family in your prayers.

                      I have pain pretty much everyday, some days are better than others and sometimes it depends on my physical activities too, what I've done that day, etc.

                      Hope you're feeling better and get to experience some break, even if it's just a few days of remissioin.

                      Love from far away,
                      Tracy K

                      Current & Past Health Diagnosis(s)
                      Currently suffering from 2nd Bladder Prolapse
                      Interstitial Cystitis- March 2004
                      Fibromyalgia 2004
                      Chronic Fatigue Syndrome 2005
                      Severe Pelvic Floor Dysfunction
                      Irritable Bowel Syndrome
                      Tension & Migraine Headaches
                      Chronic/Severe Urinary Retention
                      Numerous Endometriosis/Adhesions Removal Surgeries
                      Pelvic Organ Prolapses (Uterus/Vaginal Walls, Bladder, & Rectum)
                      Partial Hysterectomy 1997
                      Ovaries Removed due to large cysts 1998
                      Chronic UTI's (ongoing)
                      Medtronic Interstim Unit removed after 5 months due to severe infection and unit was floating around in my lower back 2004

                      Never be ashamed to ask for help when you need it.

                      God will never give me more than I can handle, but sometimes I wonder if he lost track of what's he's dealt out here ???? I'm trying here


                      • #56
                        I will definitely keep you in my prayers.I have been trying to get disability for months now.I am on my second appeal and waiting to hear from it.I was on oxy also,and took myself off of it,because it just seemed as if I was losing all my ability to think,and remember things.Right now,I'm on Neurontin 3 x a day,Lorcet plus 3 x a day,and zonegram 3 x a day.I still have pain every day,and the medicine pretty much keeps me in the bed.It's like,you can't function without the meds because of the level of pain,and can't function with it because it just zombies you out!!! So frustrating.We all just have to hang in there and realize we are not alone! Hang in there!


                        • #57
                          Pain everyday for me too...and my doctor frowns on prescribing pain meds...grr.


                          • #58
                            I have pain every day. I also have Pelvic Congestive Syndrome, an equally painful condition that involves swollen "vericous" type veins in the Uterus, ovaries, and vulva.
                            If the IC isn't acting up, the PCS is, or they act up together and it's Vicodin and heat, lay down on my right side (only) and cry until it stops. It's very unnerving for my son and husband right now, there's nothing they can do and they feel helpless.
                            I take Elmiron, Flomax, Pyridium Plus on a daily basis, and Vicodin as needed. I try to tough it out because I'm terrified of becomming addicted. I never took anything for headaches, etc unless it was the last straw. Now I pop pills like MnM's!

                            Good luck and God Bless!
                            Hopekeepers Support Group Leader

                            Diagnosed IC 1/07/04
                            Fibromyalgia, IBS, PFD, Urethral Instability, GERD, Chronic Unexplained Pelvic Pain for most of my life

                            Remember, all is not lost as long as we keep our sense of humor!


                            • #59
                              meeeeee toooooo!!!! i am a 24/7er. my pain is in my urethra. constant stinging. nothing helped until recently. my ob/gyn put me on elmiron and i have been completely pain free this week. even the stinging is gone. i didn't realize how much pain i put up with until now that i have a pain free day to compare it to. i haven't felt this good in 5 years!

                              hope you find something to relieve your pain soon.


                              • #60
                                I have been diagnosed with IC 8 years and fibro 3 years ago. I have pain everyday from the IC. The fibro. pain is not as constant but I can't miss taking night dosage of Elavil to ensure sleep. It is the only drug I am on. I have reactions to narcotics (from- rashes to retention to itchy to kidneys shutting down) so I can't take them. Recently I have lost 25 pounds. I went low carb and for me the sugar cravings decreased as I stayed on the diet. Over Christmas I was having sugar again and I found the cravings are back so I had to cut all the sugar out of my diet again and the cravings are slowly going again. Thank goodness for my low carb cookies ( 1 cup peanut butter or almond butter, 1 egg, 1 cup splenda Bake at 350 deg. for 8 min.).
                                I also have had interstim for 4 years. It has not helped me with pain but does help with frequency. My bladder used to hold 25-35 ml It now holds about 125 ml.