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Cannot deny the truth anymore...

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  • Cannot deny the truth anymore...

    My name is Danica and I am 40 years old. I have lived a highly active life. I and my family eat very healthy and are regulars in the gym. I have a reputation with my friends as being somewhat a health fanatic. It has been quite shocking to discover that I have IC. I have for years suffered from bladder infections (one or two a year). My last what I thought was a bacterial infection on Dec.12, 06 was not responding to two courses of antibiotics and the pain was beyond excruciating. Finally on January 3, 07 a specialist performed a cystoscopy and confirmed IC. I wasl in denial and have tested my boundaries by eating fruits, having a glass of red wine, and a cup coffee, that would ultimately send me into an incredible flare. I guess there is no denial anymore, and I must accept that this is true. My life has been impacted in every way possible--physically, emotionally, sexually (intercourse is so painful), socially and mentally.
    In addition to pharmaceuticals (potassium citrate, elavil) I am taking herbs and supplements that a homeopathic nutritionist recommended. They include cal/mag citrate, gluchosamine hydrochloriate, MSM, gotu kola, super bromelain, and super acidophilus. The first three weeks when I didn't know I had IC, I was in continuous 24/7 pain. Since diagnosis I have been on a rollercoaster ride in and out of flares I assume because when I tested the waters with foods I shouldn't eat and attempt sexual intercourse with my husband, I invariably end up in a painful flare. I am now sadly accepting that this is my fate and have taken steps to gain control over this. Joining this group I hope will be helpful to me and to others. I have a few questions to pose to you and they are as follows:
    1. Will I ever be able to resume normal sexual intercourse with my husband ever again without risking a flare?
    2. Do you find working out improves, does not affect, or worsens IC?
    3. Is there a way to cheat with the taboo foods without a flare?
    4. What has worked for you to lessen the urgency/frequency to urinate?

    I would really appreciate your valuable imput. I am now dependent on others with IC who truly are the only ones that can understand how life altering this illness is. Thank you.

    Last edited by Danica; 02-12-2007, 06:33 AM.

    Stopped taking Elmiron for the time being-- could not tolerate side effects

    ADARAX 25mg at night and at times morning
    Calcium mag citrate w/ vit.D
    Prelief 8 to 10 a day
    Cystoprotek 4 a day

    ~God's mercy and grace are infinite~

  • #2

    I think its normal to feel denial..There a lot of things that can be helpful to you..Have you tried the IC diet?.. I dont follow it strictly, but I have found that I can not eat the problem foods, like Tomatoes and fruit except dried brown raisins and no citris or coffee and NO carbinated drinks and tea makes me flare the worse...I also have found that MSG is BAD BAD!!!!
    You even have to watch bottled water, some brads have a lot of additives..

    For more information on the diet, you should check the IC handbook out..

    Hope this helps.. and remb we are all here for you!!!

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

    Link to Patient Handbook:

    Diet Reference Sheet:

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

    ICN 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.


    • #3
      I was only diagnoised in Nov so I am sure that are people here that can answer your questions a lot better but here it goes.
      1. Sex, there are things that you can do to help prevent a flare or reduce how bad it is afterwards. As of right now I usually have some level of pain after I have sex but taking AZO before hand and using a heating pad afterwards seems to help.
      2. I can't answer any questions on working out because even though my doctor suggested about a month ago that I start getting some exercise I have yet to do anything about it, maybe somebody else here can answer that one.
      3. Cheating on the diet. A lot of people use Prelief to eat acidic foods, I have some but I've still been too nervous to try anything acidic because I don't want to have any more pain but others seem to say it works, there is a section of the forum about it and it's in the patient handbook too I think.
      I can't answer #4 yet either but I'm sure other's can. Hope this helps some.

      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


      • #4
        to the board. The first thing that jumped out at me from your post was all the meds with "citrate" in them. That can be a VERY bad irritant to the IC bladder. If there's any way you can get those meds changed to plain old potassium, etc, I would do it. You might see a marked improvement just from removing that one ingredient, especially if you are taking more than one med with it.

        Honestly, when you take that many homeopathic meds you are not going to find out if one of them is causing the flare. Its possible that these are contributing to your pain. I would stop all of them and introduce them slowly, one at a time, and see if you get any relief from that one. If you have relief, or no extra pain, add another after a week or so, and so on.

        I would also check with the pharmacist and make sure that these OTC meds are ok to take with your prescription. There are no warning lables on herbs regarding interactions.

        Definately check out the patient handbook, and you may want to check out the diet area of this message board. There are lots of great tips there!

        I hope you feel better soon....and please know you can come here and ask anything, there is no such thing as a stupid question here.......we talk about just about everything!

        *IC-- Summer 2004; PFD--October 2005
        *Fibro--Fall 2000; CFS-- Fall 2000
        *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

        Total Abdominal Hysterectomy--adenomyosis--9\08

        04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.


        • #5
          When you're newly diagnosed & in so much pain, I think it's important to follow the IC diet strictly. Only now, after several years of the IC diet am I able to cheat every now & then. It was terribly depressing for me to give up so many foods that I love, but when I'd cheat & spend several days in pain, I realized it's just not worth it.

          When I was first diagnosed I was so scared. But time makes it better. You'll be able to figure out what medications help you (I'd also stop the homeopathics for now but keep Elavil) & which foods are your worst triggers. MSG & nitrates are the worst for me, in addition to the normal foods on the list.

          Again, it takes time, but you will learn to manage this disease. You'll just have to take it slow and don't cheat right now or it will take even longer to get better!

          Hang in there!
          IBS 4/04; IC 8/05; Vitamin B-12 Deficiency 7/06; Asthma 9/06; Citrus, MSG, Sulfate/Sulfite, Nitrate/Nitrite, Sodium Benzoate Allergy diagnosed 9/06; Fibromyalgia 6/07; Pelvic Floor disfunction 2007; Hysterectomy 10/08; Fallopian Tube Cyst removed 5/10; Chronic Diarrhea since 12/10 ; Ulcerative Colitis 4/12

          Elmiron 3x day
          Trazadone at bedtime
          Tramadol as needed for pain
          Monthly B-12 injections
          Continuous Birth Control (even though I had a hyst, to control cysts)
          heating pad, hot epsom salt baths, strict IC diet
          Interstim implant 9/11
          Ulcerative Colitis Meds - Remicade, Azathioprine, Lialda, prednisone several times a year

          Failed Bladder Treatments
          Lyrica, Elavil, Detrol, Detrol LA, Ditropan, Sanctura, Flomax, Prelief, Pyridium & Urelle (allergic!), Lidoderm patches, long term antibiotics - Macrobid and others, instillations (ouch!), CystaQ, pelvic floor therapy, fulguration, bladder injections, bladder stretching


          • #6
            You know, I've thought about this post a little, and I have to agree with Sandy -- those citrate things often irritate us. I would also follow the protocol she suggested in which you take the herbs away and then add them back one at a time.

            I am not an expert in herbal medicine, and do not use it for myself, but I do know that there is much, much less regulation on these things than there is on prescription items. I encourage you to tell your Western doctor and pharmacist about all of the herbs you are taking, because there could be serious interactions with medications they prescribe.

            That said, once you find the treatment plan that works for you, you will likely be able to resume all normal activities. There are many, many ICers out there who are not posting here because they are out living normal lives, nearly symptom-free. It can take a while to see what works, but keep trying. It is worth it in the end

            *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.


            • #7
              Welcome Donna!
              I know how you feel right now and It does get easier...........I promise!
              We will get your life back and you will be able to enjoy life.........but it will never be the same again. You will have to change I am afraid and I wont lie its not easy :-(
              I was also VERY active and abit of a health freak he he and loved running! I used to run 4 miles 5 times a week and was very fit. Not I have put on 2 stone and cant even run upstairs and it makes me very depressed.

              however after 2 years of trial and error with foods, meds etc I now have lots of good days. I have a full time job a boyfriend and a social life. Ok my social life is not like it was but I still have one!
              The hardest thing for you will be accepting change which will make you angry, upset, frustrated, confused and hurt but you will get through it!!
              Try to stay positive and use us all for support.

              I sometimes think that at the age of 24 I should be gonig out with my friends all the time and having a "normal" life and it gets me down but I have to keep looking forward! :-)

              You will be fine! I would advise you to research as much as you can in IC diets (theres lots of information on here) and also buy some books (IC survivla guide) which will help you to come to terms with what is happening.

              This just proves it doesnt matter how fit or healthy you are, you can still get IC

              take carexx
              Started with symptoms 2004 after a severe infection.
              Was diagnosed with IC Feb 2006 after cystoscopy.
              Diagnosed with vulvodyina and PN in july 2006.
              Dignosed with ME and IBS Oct 2006.
              Currently taking Amytriptaline 50mg, regular pain killers and birth control!
              Also doing IC diet and regular use of heat packs.
              Still struggling with IC and controling my symptoms so looking for some help

              also recently had abnormal pap, CIN III and just had LEEP done 2007


              • #8
                Thank you all so so much:-)

                I cannot even begin to describe how breath taking it really is to have all of you respond to my post....I haven't stopped crying since I started reading all your responses...FINALLY someone understands and fully comprehends how debilitating this family (husband, daughters, parents, sisters) try to be very sympathetic but even my sister said, "Danica, think positively. You don't have cancer!" I feel like they don't really grasp how severely my life is altered by IC. Reading your posts has given me such a sense of validation that my response to my diagnosis is not overstated.
                Thank you so much for your kindness and I genuinely look forward to future correspondence with all of you.


                Stopped taking Elmiron for the time being-- could not tolerate side effects

                ADARAX 25mg at night and at times morning
                Calcium mag citrate w/ vit.D
                Prelief 8 to 10 a day
                Cystoprotek 4 a day

                ~God's mercy and grace are infinite~


                • #9
                  Hey Danica and Welcome!
                  My finace' was recently diagnosed with IC and its been a rollercoaster for us as well. Reading your first post was like a flashback to when she first found out. It seems like it hits everyone kinda in the same way at first. The deal with others not understanding the magnitude of your situation can be very fustrating. I have found that being patient with her and understanding as much as I can about IC has helped her moral very much. Without getting too personal concerning our lovelife, I have just made it apparant to her that I am most certainly NOT inconvienienced by her condition. If I were to seem fustrated or insinuate that things are complicated now because of her IC, it would devistate her and I just couldnt bear for her to feel that way about herself. There are "ways" and if two folks love each other immensely and have a bit of creativity, anything can be overcome. I dont know how much she wants me "sharing".....hehehe...., so I will leave it at that cuz she frequents this board too and I dont wanna get in trouble.....
                  As far as diet, she has been taking the Prelief religiously and it seems to be helping. She has dumped carbonated drinks, manages to sneak one cup of coffee in the morning, stays away from anything with citric acid or any other acid-type stuff. Its a big change. I remember one of her first trips to the grocery after her diagnosis and she got so upset. It fustrated her to no end because it seemed like there wasnt anything for her to be able to eat anymore. In time tho, she has found things. It gets better and with trial and error, you begin to see what causes flares and what you can get away with. Trying too many "cure-alls" in the beginning tho will be confusing because you wont know what may be causing a problem. Its best, like others have said, to experiment with one thing at a time to see how you react. Its just less confusing that way.
                  In no way is your response to your diagnosis overstated. Its a life-changing event. After her initial diag., I too was pushing the deal that.."Well, at least we can still have a baby and its not Endometriosis or thank God you arent dying and its not cancer." I think those are normal reactions, even for those that love and care for you very much. We dont know what to say to help. We are just trying to make things not seem as bad I guess. Coming here has made such a big difference in my understanding of what ya'll are going thru. I have a deep respect for anyone coping with this condition. Ignorance of IC is the biggest problem and it isnt really anyones fault unless they just dont want to try and gather some info and understand it. There isnt much out there in the mainstream. I hadnt even heard of it until she got diagnosed. It has made things much better for the two of us by my trying to educate myself in IC. Sometimes, I even run across stuff she hasnt read yet and I surprise her with stuff. It just means so much to her when she sees me taking an interest in her condition. I just want to do anything I can to lift her spirits cuz lately it seems to be the little things that do make a difference.
                  Good luck Danica and God bless. You will find your way thru this. Those around you that truly care will find their way too. Its a shock in the beginning for everyone involved. Keep the faith.....It gets better. You'll see......



                  • #10
                    Hey Danica,
                    I wanted to say thanks so much for recommending Dr. Gillepsie's book in another thread. I picked it up myself at Borders this past Saturday, and now I've scheduled an appointment with my regular doc to talk about my back and possible nerve damage. I guess any references here or in the recommended books dealing with possible back injuries as a potential cause just went right over my head - there's so much to try to learn that it is all overwhelming. It wasn't until I got into this other book that I suddenly remembered I'd biffed it on a rock waterfall really hard two years ago, and possibly broke my tailbone at the time. I never sought treatment even though it hurt for months because I figured even if it was cracked, there wasn't anything that could have been done. Now, I wish I would have had it checked out sooner, but at least now, I can try that route to rule out just one more possibility. So hey, there's some encouragement - in such a short time you just might have helped someone else find a piece of her puzzle!


                    • #11
                      Hi Mellusk~ Danica here...I too was so excited about Dr. Gillespie's theory but I was shortly after my post about her book told that her credibility was completely tarnished with her numerous malpractice lawsuits and fraud perpetrated on her patients. I compel you to be very careful about getting too excited. I for one cried when I found out about her unlawful practices because I read her book from cover to cover and truly felt that this may be the trigger (not cause) of my IC. And it still may. I too had a very bad tail bone and L5 injury. I also pulled ligaments and muscles on my left hip called the psoas muscle complex. These pains lead directly from my lower back and sacrum, around the left hip, to the tip of my pubic bone to wear my bladder lies. My Uro thinks there is enough evidence to have an MRI of my spine to make sure there are no cysts, bulging discs, or bone spurs pressing on the pelvic nerves. But as far as Dr. Gillepsie is concerned she may have started out being truly with her heart and mind in the right place, but she went completely astray and lost all credibility with other specialist in the field. It wouldn't hurt for you to have an MRI of your spine if your dr thinks so since it sounds like you had a pretty bad injury to you lower back and sacrum. But just be cautious about giving too much credence over what she suggests at this point. Trust the info found on this site and your doctors.
                      Let me know what comes of your test results and I will let you know mine too.
                      I'm so sorry to have led you astray over that book. I didn’t know until after I posted...
                      Take care.

                      Stopped taking Elmiron for the time being-- could not tolerate side effects

                      ADARAX 25mg at night and at times morning
                      Calcium mag citrate w/ vit.D
                      Prelief 8 to 10 a day
                      Cystoprotek 4 a day

                      ~God's mercy and grace are infinite~


                      • #12
                        Oh yeah, there is definitely a ton of things in there that kind of already made me take it with a grain of salt, but as I'm finding more and more "food triggers" that are supposed to be horrible don't affect me like they do others, it's got me thinking. I mostly just read her portions on back injuries and skimmed the rest.

                        editted to add that there's other things making me want to check out the back/nerve possibilities, and since I don't really believe fully in coincidences...
                        Last edited by mellusk; 02-20-2007, 08:08 AM.


                        • #13

                          Hi Mellusk~ I too have a hard time believing that the pain I experience from the injusry to my L5, sacrum, around the hip, and down to exactly where my bladder lies is completely independent of the IC. It could be for sure but it may be totally related to the bladder spasms and pain. It is interesting too when I have my husband give me a deep tissue message to my lower back and sacrum and do pressure point to my psoas complex muscles to the tip of my pubic bone, my spasms to my bladder subside. This is why I hope the MRI shows something to suggest that the pelvic nerves are being pinched by a cyst or bone spur or disk slipping. I never thought before IC that I would ever hope for any of those things and now I am actually praying for it. Isn't life full of ironies? In the meantime I just continue to do what I have to do to manage the pain.
                          I have had amazing relief from burning urination using Prelief. I still get the painful spasms and vulva irratation but the burn has really disappated.
                          Take care and keep up the faith.

                          Stopped taking Elmiron for the time being-- could not tolerate side effects

                          ADARAX 25mg at night and at times morning
                          Calcium mag citrate w/ vit.D
                          Prelief 8 to 10 a day
                          Cystoprotek 4 a day

                          ~God's mercy and grace are infinite~


                          • #14
                            Hey Danica,
                            I got the results from my x-rays back I had done on wednesday and everything seems normal there. Still, my regular doctor is ordering physical therapy and based on how that goes, he may recommend an mri...given my claustrophobia, I'm hoping it doesn't come that. There's one more step out of the way!


                            • #15
                              Hi Danica,

                              I have only been a member for a few days, even though I have had IC for many, many, years. You will have good times and then not so good times. Who knows? maybe a cure will come along in a short while. No one knows. I am moved by the fact that we have sisters in pain who suffered 20-30 years ago when Drs said that IC "was all in your head". I can not imagine hearing that from every Uro. and not getting help. I know many of us have had a URO at one time or other in the beginning, say they could not help, but there are good Docs out there that want to help you to a possible remission or at least lessen your sypmtoms considerably! Find them through the network and follow the IC diet. I am finsihing a flare up; I hope. I have gone back to my strict diet until I feel good again, and stay close to it from now on.
                              You will be ok and the folks here on the forum are such beautiful people: full of love, good advice and comfort. They have already helped me and I am thankful.

                              Stay in touch and know that you are cared for by this group of ICers!

                              Love, Katheryn