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  • #1

    Still in shock.

    Hello there.

    Well, though I have been diagnosed and it has lifted a HUGE weight off my shoulders, I have found that a new pile of weight has taken its place.

    My bladder infections started when I was a freshman in high school. I started having 2-6 bladder infections a year. It was quite annoying having to leave class to cry while using the bathroom. After high school, I started having difficulties in between my bladder infections. I would have pain urinating, but when I went to the doctor my UTI test came back negitive. Two years ago I had a bladder infection and was turned away from our hospital's ER because they were too busy. It was New Year's Eve. The next morning I woke up with a kidney infection. After that experience my doctor sent me to see a urologist. He was a small man who didn't speak much english. I didn't feel comfortable with him and had my first experience with a catheter that wasn't inserted gently. After that appointment I was set up for a cystoscopy perfomed in his office without any numbing ointment. My parents heard my screaming from the waiting room. He said he saw a small crack in the lining of my bladder. He set me up for a years worth of Macrodin-a small antibiotic-in hopes the crack would heal itself. I never returned to his office. I took the Macrodin, but would still have the same symptoms of bladder infections. My doctor got tired of me asking for a UTI test since it would turn up negative. I started thinking it was something in my uterus, so I was refered to a gyno specialist. My visit with the gyno was confusing. He told me nothing was wrong with my uterus and I needed to go back to the urologist. All I knew was that I was not going back to that office!! Almost a year, exactly, from my horrible cystoscopy experience I decided that I couldn't live with the pain anymore and started looking for alternative urologist in surrounding areas. I found a female 30 minutes from me and set up an appointment. She is wonderful!! I loved her the minute she introduced herself to me. After our first meeting she told me she thought I had IC and set me up for a cystoscopy with bladder hydrodistension and possible DMSO. Sure enough, my pictures from the surgery came back proving the pain hadn't been in my head all along. That was last month. Since then I have started taking Elmiron and am already regreting that decision. I'm so afraid of the side effects that I haven't met, yet, and am not happy with the ones I have now. I feel alone. I have support from my fiance, but I feel bad about always telling him my bladder hurts. He doesn't quite understand, though he tries. I annoy myself by always saying, "No honey, I can't. I hurt too much". I keep crossing my fingers in hope this medicine works, or that they will come out with a new one without so many side effects. I don't like taking medicine to begin with and I'm worried about having to add on anymore. Until then I will just wait and see what happens. I'm glad I found this forum so that I don't feel so in the outfield. I've learned a lot already and can't wait to learn more.

    Until then~ Noelle
    Last edited by nmorlock; 04-24-2007, 08:49 PM.
    Tags: None
  • #2
    Glad you are here. This is the place for support.
    TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
    My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985
    Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
    Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
    I post to encourage and offer total support for rescue instillations.
    Find me on facebook: L. Clark Thomas
    Louann

    Comment

    • #3
      welcome

      Hi Noelle,

      So glad you're here. I just found this place a month ago and have already learned so much from the people here. I was diagnosed four years ago (after looking for answers for 7 years, grr!) and you sound a lot like me. By the time I was diagnosed I had told myself, "one last doctor. If he doesn't do anything you can start thinking about ending all this." That probably sounds psycho b/c I have a great life with the best husband and the best friends, but I was so desperately miserable and no one was helping me. I got so tired of putting on a happy face and pretending I didn't hurt like heck. I was so grateful to find someone who finally, after all those years, gave me an answer. I'd been made to think this was all in my head, that my frequency was nothing more than a bad habit. I was sooo happy to have those cysto/hydro pictures in my hands. It proved I was right all along. My doc actually gave me a copy of my photos. Kinda gross but I showed them to all my close friends who knew I'd been having so much trouble. It kinda helped them "get it", especially my husband.

      Noelle, Elmiron only works for about 30% of the people who take it. To me, it sounds like you are in a lot of pain right now and I encourage you to seek additional therapies to supplement the Elmiron. Hopefully it will work for you, but even if it does, it will take a few months for you to tell a difference (from what I hear). I was on it for a year and it didn't help me.

      I definitely understand not wanting to be on lots of medication. Until recently I was only taking one antihistamine to help control the inflammation in my bladder. MY GOD! I wish I had done this sooner. You can see in my signature all the meds I started taking last month. I feel the best I have felt in over ten years. While I still don't like the fact that I'm on so much medication, I am kicking myself and wondering why I allowed myself to suffer so much for so long. The meds do not "dope" me up or anything. The Neurontin makes me a little tired but not too bad.

      LOL, I'm even the type of person to avoid stuff like tylenol and ibuprofen. I just don't like putting chemicals into my body. I guess I'm a little crunchy granola and have wanted so much to believe that I could control this with diet, exercise, relaxation, etc. But the truth is, it just wasn't working for me. It helped, don't get me wrong, but not enough.

      I even have very mixed feelings about the nerve block I have scheduled for next week. It seems like a drastic measure to me, to have medicine injected directly into my spine. So I know how you feel about the whole meds issue. I did, and still do, feel the same way. But for the first time in ages and ages I have enjoyed doing things without thinking of my bladder for every second of every day. I am just so thankful.

      Cheers and hope you get to feeling much better VERY VERY soon.
      Lee Ann
      Current Rx Meds:
      Atarax, Ditropan, Elmiron
      Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
      Hooray for babies!
      Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
      Didn't work for me:
      Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
      IC (Mod-Severe) since 1996

      UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


      My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

      Comment

      • #4
        welcome!
        Sorry that you have IC but glad that you finally found out what was causing all your problems. Now you can get on the road to properly managing your IC. This is a wonderful place. The info here and the super support is a lifesaver for me. It's so hard to have disease that the outside world doesn't understand. But have this place to fall is so comforting. I wish you the best!
        ~Laura

        There can not be a crisis next week. My schedule is already full.

        March 2006 IC tested positive

        current treatments for IC:
        Zoloft 100mg
        Prelief
        tramadol hcl 50mg (4-8 per day)
        diphenhydramine (1 nightly)
        elavil 25mg, Just started Nov 11

        additional meds for pain if needed:
        darvacet
        loratab
        percocet
        tried Elmiron for over year and didn't see much of a change, gained weight

        Also take Lisinolpril for high blood pressure

        Other conditions:
        IBS '93
        depression '94
        stomach ulcers '95
        Mitral Valve Prolaspe Syndrome '01
        Migraines since childhood
        Chronic Fatique '03


        It's not the number of years in your life that matter but rather the life in your years.

        Comment

        • #5
          I'd like to add another to the IC Network. I'm very glad you found us.

          I honestly think my very worst time with IC was before diagnosis. Once I knew what I was dealing with it became easier.

          Sending warm healing thoughts,
          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          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: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          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.           [3MG]

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

          Comment

          • #6
            Hi and

            Glad you were finally dx with IC (well, not exactly with this - but you hopefully know what I mean). I took me about 5 years and 3 doctors to finally find out what what wrong with me. (this was back in 1992, so I would say that I was having problems before then of course. I have been going to the same group of doctors since 1989.
            I have been on Elmiron since 1997 (or 1998); haven't had no side effects whatsoever.
            I was also like you, as soon as I was finished with high school (back in 1978 I had continous UTI/kidney infections some were positive some were not, but always I was put on antibotics. There was even a time that my kidneys were so bad that they thought I was going to have to be on diaylasis(?) loss a lot of weight - they couldn't figure out why- which is what I'm doing right now, I have lost about 25lbs and we don't know why-- I told my current doctor that I haven't weigh this since I had my first child. (my gyn made the same comment to me when I saw him earlier this year--been seeing him for almost 22 years).
            Besides Elmiron though, there are other medications you can take- I can't just can't think off the top of my head right now, as I don't take them - only take Elmiron, pain med. and the doctor does a hydro every six months or so on me as these are the only things that work for me. Sure I take other meds but they are for other conditions.

            Good luck.

            Comment

            • #7
              Oh, wow, I was reading LeeAnn's post and I could have written it myself -- that long, hard struggle to find an answer, some validation, and trying to keep it together in the meanwhile. I too reached a point where I didn't know if I could continue to carry this pain, even though I have a wonderful life, husband and daughter.

              I take a lot of medications. We (my docs and I) have experimented with different drugs, dosages, and combinations, for the last two years and a half. My meds now are giving me almost complete pain relief. I get regular blood tests so I know they are not causing me any harm, nor have they changed my personality or turned me into an addict. That's not what happens. Medication therapy is usually essential, at least in the early stages of treatment. Bladder instillations are also a lifesaver, for me at least.

              I can understand not wanting to be on Elmiron, but there are other options. I've found that the OTC supplement cystaQ does what the Elmiron was supposed to do, but didn't, and has no side effects. My bladder is not cured. I wouldn't even say I'm in remission. But I have pain-free days now because my pain is being treated effectively. I have also used relaxation therapy, guided meditation and hypnosis, which were all helpful; and accupuncture and TENS treatment, which were not.

              I guess I just want to say, be open to the need for medications. IC is a serious condition. If you had cancer, you would take chemo drugs; if you had diabetes, you would take insulin. If you have IC, you need medical treatment also. At least, that's been my experience.
              Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
              Wishing you happiness and good health, and all the best out of life.

              Peace, Carolyn
              ___________________________________________________

              Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


              On the Beach with IC

              Comment

              • #8

                HI; WOW, you sure been threw so much. I can not believe a doc would do a cystscope in an office. I cant imagin your pains. I know how your feelings I spent some of the last few years going threw the same things as you, so can totoaly relate.
                I have to say please give the Elmiron a chance. It worked so well for me, It takes sseveral months for it to take effect. I havent had any real side effects from it. But It did take me a good 6 months before i had any real notisabl relief from it.
                I still was getting bladder infections though, and have been on 6 month treatment of antibiotics to control the infections,2 more months to go. But it has helped a lot.
                Before i was told I had IC, I took like 2 medications. Now I am takeing so many its unreal. But you have to put things into prespective. If you can get the relief, and get going towrds a funtioning life, its worth it.
                I am sure you hvae been told of the IC diet? It helps so many people. YOu can start to take things out, and slowly 1 by one add them in. If you notice the pain is there from 1 thing you know to take it out of ur diet.
                One major thing for IC dont drink cranberry juice. Its great for regular people for bladder infections. But for IC people, its torture to your bladder.
                For me i learned all foods done bother me, but anything like orange juice its pure toture to me. Its a pain to have to play a game of whats goingto set of my pain today kind of thing. But its worth knowing for certain what sets off your pains.
                Also for me I cant do certain exercising. And I cant wear regular clothing. FOr example excercising, if walking to much can set it off, and doing lower ab exercises deffinatly set it off. Clothing well lets just say anthing which wraps around my hip and stomach needs to be elastic, with good give, cos anything which can be restricting and happends to be pressing on my stomach, can set it off.
                I know its extreamly overwelming. I have just knows i had IC for little over a year, and its pretty much turned my life upside down bouncing from doctor to doctor. I am happy to hear that you have a boyfriend to suport you. I would also surgest that he comes to this site also. if he has questions and is also frustrated on soem things he can come and also get suport.
                A while back there was on guy here asking questions to understgand things better of his wife i belive it was.maybe a girlfriend i forget. BUt this is a great place to find suport. Also there is the IC handbook, I found it at my library. It gave a lot of good advice, it be good for you both to read. IF you have the material also he can better understand it. This is a life time thing to deal with. It will hopfuly get better, and hopefuly go into remission. But is somthing to always deal with. So the more you learn right off the more easy it will be down the road.
                I truely wish you good luck!! Hang in there, it will get better once you can understand things nad get into a grove of things now you have the diagnosis. ANd always rememebr when you need suport and cant get it please feel free to come here lots of us are here daily or weekly at least. So many people have offered me great suport. And i know they will for you also.
                Good luck,
                take care of you
                stacy














                QUOTE=nmorlock;324603]Hello there.

                Well, though I have been diagnosed and it has lifted a HUGE weight off my shoulders, I have found that a new pile of weight has taken its place.

                My bladder infections started when I was a freshman in high school. I started having 2-6 bladder infections a year. It was quite annoying having to leave class to cry while using the bathroom. After high school, I started having difficulties in between my bladder infections. I would have pain urinating, but when I went to the doctor my UTI test came back negitive. Two years ago I had a bladder infection and was turned away from our hospital's ER because they were too busy. It was New Year's Eve. The next morning I woke up with a kidney infection. After that experience my doctor sent me to see a urologist. He was a small man who didn't speak much english. I didn't feel comfortable with him and had my first experience with a catheter that wasn't inserted gently. After that appointment I was set up for a cystoscopy perfomed in his office without any numbing ointment. My parents heard my screaming from the waiting room. He said he saw a small crack in the lining of my bladder. He set me up for a years worth of Macrodin-a small antibiotic-in hopes the crack would heal itself. I never returned to his office. I took the Macrodin, but would still have the same symptoms of bladder infections. My doctor got tired of me asking for a UTI test since it would turn up negative. I started thinking it was something in my uterus, so I was refered to a gyno specialist. My visit with the gyno was confusing. He told me nothing was wrong with my uterus and I needed to go back to the urologist. All I knew was that I was not going back to that office!! Almost a year, exactly, from my horrible cystoscopy experience I decided that I couldn't live with the pain anymore and started looking for alternative urologist in surrounding areas. I found a female 30 minutes from me and set up an appointment. She is wonderful!! I loved her the minute she introduced herself to me. After our first meeting she told me she thought I had IC and set me up for a cystoscopy with bladder hydrodistension and possible DMSO. Sure enough, my pictures from the surgery came back proving the pain hadn't been in my head all along. That was last month. Since then I have started taking Elmiron and am already regreting that decision. I'm so afraid of the side effects that I haven't met, yet, and am not happy with the ones I have now. I feel alone. I have support from my fiance, but I feel bad about always telling him my bladder hurts. He doesn't quite understand, though he tries. I annoy myself by always saying, "No honey, I can't. I hurt too much". I keep crossing my fingers in hope this medicine works, or that they will come out with a new one without so many side effects. I don't like taking medicine to begin with and I'm worried about having to add on anymore. Until then I will just wait and see what happens. I'm glad I found this forum so that I don't feel so in the outfield. I've learned a lot already and can't wait to learn more.

                Until then~ Noelle[/QUOTE]


                Current Conditions:
                Endometriosis,1995
                IC,Feb 06
                IBS-C
                Prenecious Anemia
                Stomach Ulcers
                Duodenitis
                Acid Reflux
                Low Blood Sugar
                Hypothyroid
                Migrains

                Surgeries
                Laporoscopy-1995
                Gaul Bladder-1996
                Laporoscopy-2005
                colonoscopy2005
                cysto/hydro-2006
                cysto/hydro-2007
                endoscope-2007

                Meds:
                Elmiron,100mg 2am 2pm
                Seasonique,1 night(helps control pain for Endo)Provera, 10mg 1 night
                Elavil, 150 1pm
                Flexeril, 10mg 1 night(was to be 1 am also but makes me to sleepy)
                Prilosec,20mg 1am 1pm
                Zoloft,100mg 1 pm
                Topamax 25mg 1am 2pmCyannobalamin(b12), 1 injection every 2 weeks
                Reglan, 10mg, 1 3xday with meals-for duonditis
                Ultram 50mg 1 every 4hrs as needed for pain
                Pyridim,100mg as needed
                Vicodin 5/500 as needed for pain
                Heating pad
                Ice Pack
                Arthritis Pain Equate brand 650mg usualy 2 at a time
                Stool softeners w/stimuli, 2am 2pm[/COLOR]

                Hopefuly no more gets added to the list!!!

                I wish the best for all of you and hope the days with pain are few. I wish you peace and calmness... for we all need it, with out it... the pain is worse.
                Try to take the best care of you that you can. When you are not happy with the care you get dont hesitate to get the help you need. Sometimes a 2nd opinion can give the calm and peace which you are seeking.
                My prays go to all of you. For I know there are many who are have many bad days and need a shoulder.. Always remember this site, for its made a huge differance to me and many people. Here you can find the the ear your looking for when you just need to vent.
                When your not looking for Im so sorry and I have no idea what can help you. Here we understand the pains the suffereing and most of all the Constant frustration. For anyone who needs it.. I will do my best to be the ear who can listen and help how ever I can. All my best to all of you.
                Dont forget to take care of you!
                Take care

                Comment

                • #9
                  Just wanted to you to the ICN! You've found a great support group filled with helpful information. If you haven't looked yet, check out the patient handbook link at the top of the web page. It's full of lots of tips and ideas on how to get through this.

                  We're glad you're here!

                  Sandy
                  *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.

                  Comment

                  • #10
                    Hi there! I'm so sorry to hear that you struggled so much to get a diagnosis. I hate that "it's in your head" comment... but I knew something was wrong and 2 of my doctors knew it (while 2 others questioned a psycosomatic problem). I was diagnosed with IC based on symptoms, finally seeing some blood in my urine (after a dozen clean tests), an unbearably painful cystoscope (I was bawling), and a potassium sensitivity test that burned like crazy with only a few cc's put in. The urge with the potassium solution was unreal. My "chief complaints" are urgency and frequency with pain upon physical activity and with my periods. They of course did a gyno work up on me too. From the start of my symptoms to my diagnosis, I suffered with all those tests for just over 6 months. It was hell and I could't believe you suffered like that for all those years. I'm so happy you finally got a dx and maybe now you can find the right treatment, avoid the trigger foods, and find a way to live a more normal life. I'm only 24 and can't imagine being normal again. Remission doesn't sound possible after all these terrible months.

                    I really wish you find a good treatment plan. I found the bladder instils with Elmiron, lidocane, bicarb, and saline help (just that day)... so I had 3 this week and then weekly for as long as I need (until the Elmiron starts to work orally or I can get them if I have flares due to diet triggers as I figured things out). I just got the IC newbie kit here and hope it helps. I'm sure you know everything about IC after suffering for so many years. I wish you improved health! Welcome to this site! I am new here but love the support and information!
                    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                    [

                    Comment

                    • #11
                      to the ICN! I see that you have gotten alot of great information so far! I just wanted to welcome you too! There is so much support and information here. I hate that you have been thru so much, but I know that the load will be a bit lighter now that you are here among friends that can help carry the load.

                      I hope that the meds work for you and you start feeling better soon!


                      Hugs,
                      Amy

                      Comment

                      • #12
                        "Never Give Up."

                        To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

                        My Photobucket Link:
                        http://s237.photobucket.com/albums/f...ramack_photos/

                        Comment

                        • #13
                          Hang in there, it takes awhile but you will find treatments that work for you and you will feel better.

                          Your story sound similiar to my experience in the beginning:
                          I too had many many many real bladder infections. Starting when I was about 19 or 20. Then years later I started to have a few times in between real infections, when they didn't find any infection but I felt like I had one, I mean it hurt in the same area, so that's all I knew at the time and all the doctor knew, "hey I must have another bladder infection" Since I had so many real infections before they just put me on antiobiotics anyway. And I did get better or rather my symptoms went away.

                          Then one day I had symptoms and showed no infection , they gave me an antibiotics and my symptoms never went away. Long road later, many tests and sent to specialist and well yeah I have IC.

                          Try not worry about the Elmiron too much, wait and see what your experience will be, because everyone is different. I got lucky with it and never had any side effects and it has helped me tremendously! I hate taking meds too, but it gets easier once you get used to it. After awhile on them I've done so good, that I was able to reduce the amount I take.

                          ( I had a little problem with some headaches in the beginning, but they went away as my body adjusted to meds and took them out of the capsules for a bit in the beginning)

                          Good luck to you!
                          Diagnosed with IC in 9/2005,
                          Currently doing good, taking breaks from Elmiron, reduced amount.

                          Comment

                          • #14
                            Hi Noelle,

                            I was diagnosed three years ago. I went through something similar. I kept returning to the doctor because of the pain and the fact that I would pass blood when I urinated. Because this often happens when I do have a bladder infection, I didn't doubt that it was an infection. Until a series of antibiotics just didn't help. I visited doctor after doctor who kept diagnosing me with a bladder infection (even though none was showing up in my urine) and would put me on antibiotics. I went through this for about a year until I moved to Richmond after my husband and I got married. I established a new OB/GYN and she was a GOD send!! She immediately diagnosed me, like your doctor did and I finally felt some relief at least knowing what I was dealing with. SO, the point of replying to your post is that I wanted to tell you to give Elmiron a chance. My doctor prescribed me with Elmiron and while it doesn't have an immediate effect, if it works for you, it will work wonderfully well. The pain for me, while not completely gone, is significantly minimized from what it was. I'm not sure what side effects you're experiencing, but one of the side effects I experienced was bloating. I talked with my doctor about the bloating and she suggested I empty the contents of the Elmiron in a glass and discard the casing, since it's the casing that can cause the bloating. Now, I pour the medicine in a small amount of water and take it that way and the bloating has gone away. Anyway, I just wanted to give you a little bit of encouragement. I also hate taking medicine, but if Elmiron works for you, it will be worth it!

                            Sincerely,
                            Amy
                            Composer
                            http://www.amyscurria.com

                            Comment

                            • #15
                              Getting a diagnosis is usually a relief, we don't have to think we are crazy. If we don't consider ourselves crazy people around us do. I know it helped me alot to get diagnosed.

                              Comment

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